• Sharing the Journey of daratumumab (DARZALEX®)

    Asked by Charlieb on Wednesday, December 18, 2019

    Sharing the Journey of daratumumab (DARZALEX®)

    On November 23, 2019 I asked "Experiance Daratumumab treatment" as I was about to start this treatment and knew nothing about personal experiance. Two people responded, one in treatment and the other just starting. There is a lot of good information in that conversation, but I feel it has become to long. Yesterday I started my journey which I will share here and hope that lynniepoo (Lynn) and MiriamMarino (Miriam) will follow suite. This question can then become the cornerstone of WhatNext to help others facing a decision about Daratumumab. The side effects listed on various sites are many, some scarry. Thanks to Lynn and Miriam I went into treatment a lot more at ease. Now I'll share mine.

    I am being treated at the Milwaukee VA Hospital, as I am a veteran. This is an outstanding facility and I cannot say enough good things about the care I have received. Their procedures call for at least the first infustion to be done in-patient. From what I heard of Lynn's and Miriam's experiances I was most grateful I did go inpatient (I would never tell anyone on this or any other site "You have to do it this way............") On 12-17-19 I checked into the Hemoc Ward and was given a private room. Shortly after that they took perliminary labs and did the impatient checkin. About an hour and half later they put an IV needle in my arm; flushed it and then checked for reverse blood flow. Two hours after checking in they gave me steriods and benadryl thru the IV. I was scheduled to start at 11:30 and it was now 10:30. The Lab did not get the IV bags up to the unit until 12:15. Lynn said she spent a lot of time waiting so I was prepared for delays. 12:30 they started the infusion extremely slow. Within 15 to 20 minutes my lips started to tingle. 5 minutes later, I had severe "Pins and Needles" in both my hands. I'm talking take a hammer and hit the nail type of pain. It did subside shortly after it started but statyed with me.

    Two hours later they upped the flow. Within 5 minutes I started choking on mucus running down my throat. I started chocking and could not breath, so naturally I went into panic mode which did not help. They stopped the flow and gave me more benadryl. In the meantime, my nurses did an excellant job of calming me down. Also, it helpped that I got sleepy from the Benadryl so I took a nap. About 40 minutes later they started talking to me and we agreeded to start back up at the slower speed. Things went better and about two hours later they bumped up the flow. Except for a slight headach, things went ok. I was out of sorts because of the Benadryl but, again, my nurses and doctors help keep me calm and we kept going. I finished up at 10:30. I was so glad that I was already in bed!

    Today is Day 2 (I forget if it was Mariam or Lynn who had it right, but I was told you keep counting the days since first treatment and not the actual treatment days). I am home now, but resting heart rate is at 85 up from 58. Also, I am a little dizzy but neither troubled the doctors.

    On 12-26-19 I will go back as in-patient since I had issues. Lessons learned from Lynn and Miriam (again, I am not saying you have to, or should do these things):
    1. If at all possible, because there are so many variables, the first treatment is better as an impatient. More then likely day one will be a very long day.
    2. From what I saw, very little is out there about pre-medicationns. I could not imagine what would have happen if they did not give me benadryl or steriods first.
    3. Don't be in a hurry to finish an infusion and don't let you medical team push you through.
    4. Just because you have a bad reaction does not mean you need to stop treatment.

    Okay, #3 is kinda pushing things; sorry Greg! My apoligies if this is too long, TMI or a little to much on telling people what to do. PLEASE, form your own opinions and work with you medical team for your specific situation. Yes, I had a rough day 1 but I got through it. Thanks to the love and support from two people on this site I am not alone in this battle. Hope this helps at least one other person including my two dear friends.

    Charles

    78 Answers from the Community

    78 answers
    • lynniepoo's Avatar
      lynniepoo

      Charlie
      I found your post and am glad your first treatment went fairly well. It is a definite treatment that is different for everyone. I seemed to do ok with the Dara but I guess the chemo is causing my neutropenic problem. They have lowered my dosage to 2 mg from 3 mg. I’m almost afraid to go anywhere!! Hard this close to Christmas.
      I’ll write more later off to drive by decorations in the neighborhood.
      Hope you feel better tomorrow!
      Lynne

      over 1 year ago
    • GregP_WN's Avatar
      GregP_WN

      Charlie, thanks for the detailed report. That's exactly wat we need more of! Your post and the exchanges between Lynniepoo and Miriam others will know what to expect if they are to have this. I hope you have a better round the next time. Please give a similar report. As for length, there is a character limit in questions but if you hit that you can continue your post as an answer to your own question. I want to thank all three of you for connecting and exchanging information.

      over 1 year ago
    • RockTom's Avatar
      RockTom

      I hope you do well Charlie. I am starting down another treatment road myself.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Charlie! You made it through Day 1! Yay! It's gotta be the hardest day.

      I started Cycle 2 on Dec 20 and am very happy to report that the treatment is already working! : )

      We sure endure a lot but if it works, there's reason to keep going and do what is best for ourselves to manage the side effects. We're on the right track Charlie and Lynnie! : ) We're gonna be ok.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      This song became my comfort in January of 2018 when I was diagnosed with relapse only 9 months after a stem cell transplant and my husband passed away suddenly same month.

      I share it with you, Charlie and Lynnie, with much love, and hope it will strengthen and comfort you too.

      https://www.youtube.com/watch?v=LjF9IqvXDjY

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Miriam,
      Good to hear from you, as always. Thanks for the words of encouragement. I have spent the last two days coming down off the dexamethasone. I recall being tired from the first time around 7 years ago, but this time I am also very dizzy. Believe it or not, I am looking forward to my next infusion as I do believe things will improve. My doctor said we would know how things are progressing within three months. What are you noticing that you can say it is working?

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      In answer to your question, Charlie: The lab results taken before treatment started (start point) and the lab results at the end of Cycle 1/the day before starting Cycle 2, show a significant improvement in markers and overall numbers.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hello all!
      Started cycle 2 today except besides lowering dose of chemo will start it next Monday not today. Although I’m still neutropenic it’s better and platelets much better. My dr decided best to hold off make it up later and get my neutropenia under control. I’m up to full speed of infusion but had to see dr first so by the time I was done it was 5:30. Dr is going to do a Pet Scan at end of cycle 2 to see how it’s doing. They have decided since that’s the one test that confirmed presence of MM it would be our go to with bone marrow biopsy occasionally. She also cut down by half the steroids! Yay! Maybe I won’t have insomnia anymore.
      Infusion was fine no issues and this evening just tired. Dr was pleased with my response to the Dara. I’m not sure I feel any different but my back pain is severe enough it doesn’t ever feel better.
      Clinic was nearly empty today. But I guess people didn’t want to be having treatment close to Christmas.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charlie, Lynnie,

      I don't remember if you've mentioned it in the past, but are either of you taking Pomalyst with the Darzalex/Dexamethasone? I am on 2mg Pomalyst for 21 days and 7 days off.
      Started Pom on the day Darzalex infusion began. So far, the only side effect of POM is drowsiness, so I take it at night.

      Lynnie, I had a PET scan done during Cycle 1 too. I can expect a bone marrow biopsy in May 2020.
      Glad steroids cut down for you. I take 5 of the 4mg Dex on infusion days only. I think the hardest thing about taking Dex (for me) is not getting enough sleep for two days after treatment. Oh, my brain.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Yep I am on Pom as well. That is what they feel is behind my neutropenia. They lowered it for round 2 to 2mg. Also on the 21 on 7 day off cycle. I
      Was there so long I had to take an Uber to my daughters for $30.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Hi Miriam and Lynnie,
      So happy to see everyone doing so well. I think we three should take pride in the fact that all of this will help the next person about to embark on this journey. It is not easy but look at how we are dealing with it! I am not on Pomalyst nor did I stay on Revlimad after 8 or 9 months of maintenance.
      After my 1st treatment last Tuesday, they sent me home with a two day supply of Dex. I forgot to mention the NOT sleeping aspect of all of this. Last Saturday I started to crash and spent most of Sunday sleeping. The main issue I have had is being dizzy. I called my nurse yesterday and they said this was not part of the Dara. Been pushing fluids. Anyone else have issues with being dizzy? The next treatment they are going to increase the Dex. and Benadryl because I had a reaction. I can hardly wait to see how many more sleepless nights I'll have. My doctor said she was going to wait 3 months before doing a bone marrow biopsy.

      Still upbeat in Milwaukee; your friend Charles
      I believe we can all enjoy the Holiday.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Charlie
      The sleepiness should wear off once you stop the Dex. I too had Dex for two days after treatment the first two times.?i felt like the INSOMNIA QUEEN. I’m sure people thought I was crazy playing words with friends at 3 am. But now only the first few days after treatment. And since yesterday I only had half I only had hard time getting to sleep but then slept all night. We’ll see how tonight goes. Once you do second treatment maybe they with refigure premeds. Now I only get half Dex and a Benadryl. I was getting a Tylenol but they stopped that this time.
      Do you think it might help others to know our road to this treatment? Starting with first treatment, SCT or not,maintenance or not, length of time with MM, and what else you think might be helpful. Just a thought.
      Have a wonderful Christmas and hope your next treatment goes well.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Greetings everyone. Hope your holiday was ok. Yesterday was my second treatment and they did make adjustments to my premeds. Lynnie, since I had such a bad reaction last week they gave me a new drug that helps with the overproduction of mucus which choked me. That drug cannot be used with Dex so they gave me Prednisone which increased the dose of steroid. They also upped the Benadryl. This time no reaction and only 5 hours. I also was sent home after treatment. I am now on 40mg of prednisone for two days, then 20 and off.. No sleep and bad stomach. It is truly remarkable how they have so much of this figured out! I will let you know the other drug when I get info on it. Oh, and they did give me Tylenol. My next treatment is on the 7th. They said they do not want to change anything with the premeds since they have the right mix They may speed up the infusion time, going to max quicker. It is amazing how well we are all doing. Miriam?

      Lynnie, I think you have a great idea. Treating MM is all about the decision process and what did and did not work. Let me figure something out and I do that. RokTom, do you have anything you would like to add? Please feel free to join in and let us know what you doing. Lynnie and I started our journey together 7 years ago and Miriam recently joined us.

      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hey, Charlie, Lynnie, it's so good to find updates from each of you. Thank you. It is so helpful.

      Today was my day 8 of Cycle 2.
      Two more Friday treatments and then I will begin Cycle 3 - 6 infusions every other week.

      I understand the "no sleep and bad stomach" you mention, Charlie. I endure no sleep for two days after infusion. Stomach issues have been ongoing since induction 2016.
      The Pomalyst chemo pill that I take at around 10 pm (21 days on - 7 days off) has a drowsiness side effect on every day except infusion and for two-three days after. Otherwise, it actually helps me fall asleep during the rest of the week! Thank goodness.

      Lynnie, I still receive Tylenol extra strength, Dexamethasone, Benadryl and an anti-nausea med before infusion.

      Charlie, I was prescribed Montelukast the night before infusion for Day 1 (split-dose 2 days) and it helped with the congestion you mention. I also took it on day 8 and day 15. I do not take it anymore.
      The congestion and other symptoms that made me feel like I had a cold or flu is resolved.
      And in answer to an earlier post, yes, I experience dizziness. And then I go down a list and ask myself if I drank enough water, slept 7-8 hours, ate more plant food than not, took my vitamin supplements, stretched in Yoga poses for exercise, meditated on God's Word, and other things that help 'ground me.' I realize the combination of meds may cause dizziness but I must not lose focus that I can contribute to my wellness if I do my part, and that's where that list comes in. My brain needs a little help to remember so I write things down and check off daily. I do leave room for spontaneity. That usually involves food and cooking something new. My appetite is returning. I lost 10 pounds in Cycle 1. But I think I am catching up again in Cycle 2. haha

      This morning was especially hard for me to go to the Center for infusion. I'm tired emotionally, mentally and physically. I cry for so many reasons. Mostly because I feel alone but I'm not alone in this. I need to redirect those thoughts more so lately. I'm going to find another song.

      "See" you all next time.
      Love and prayers for all of our well being. For this treatment to work.
      Miriam

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      So I was able to review my notes from cycle 2 and see that it is Montelukast that they gave me as one of the pre-meds. They did increase the dosage of pre-meds due to my reaction on cycle 1. I do not understand the switch from Dex. to Pred. but I'd rather be on Dex. I have not slept since Thursday and last night was really bad with my stomach. Tomorrow I drop the dosage for two more days then i'm done. Cycle 3 will be on the 7th and they will repeat everything.

      Miriam, I have been carrying bottles of water with me, plus drink orange juice and Gatorade. I get so tired of being asked "are you drinking enough fluids" every time I get dizzy. My blood pressure was normal so we don't know what was going on. I have read that dizziness could be a side effect but my doctors say no. So far I have not had any more issues with that. The stomach is so much worse on Pred. then on Dex. as is the not sleeping. My appetite is only a problem because when I eat my stomach starts bothering me. I am always hungry and have gained 7 pounds.

      I am so fortunate to have a great team of doctors. They have made me very comfortable with all the decisions being made. That is why I did not question the move to pred. nor fully understood about the Montelukast. When I do ask questions they give me great answers. Reading our post you can see how complicated this treatment is and that we all react differently. Miriam, know that you are not alone and we will all get through this together. I too cry for so many reasons and feel alone at times when I am surrounded by people. No one can ever completely understand what we as individuals are going through. As cancer patients, we can better understand each other, but those that have not had cancer really can't. I found this site; found you two extraordinary ladies and have great doctors. My faith tells me this treatment will work and things will get better.

      One last item, my cognitive skills are next to nothing. Major issues concentrating and I have no short term memory. Everything for me is routine and I cannot be interrupted. Phone, wallet, keys before I leave. I always lock the door to ensure I have my keys. Check the time on my phone to ensure I have my phone. Touch my wallet. When I get home they all get taken out of my pockets and put on my dresser. I have alarms set for taking meds and a 7 day 4 cycle pill case. when the alarm goes off I stop what I am doing and take my meds. My husband knows not to interrupt me when I am going through a routine. This is what I went through back in 2010 and after my first heart attack. Things got better after SCT in 2012. Hoping for the same this time. Things really got bad after second heart attack.

      By the way, yes I love that song! Lynnie, hope your doing ok.

      Love to you all
      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charlie,

      Everything you mentioned as your routine due to major issues in concentrating is exactly my routine too! I really appreciate your sharing this. We do what we have to do to help ourselves.

      About the dizziness (and foggy brain) it's the only thing that stops me from having complete independence. I won't drive on the days I feel dizzy and the brain can't compute clearly. The world thanks me. hahaha...
      So, I'm down to driving only one day a week, the day before infusion which is when the side effects from the previous infusion have lessened and I feel confident enough to drive and run errands.
      Not bad. Just limited. "It's ok," I tell myself, "it could be worse." You know it really could be, so, I choose to be thankful that I can walk, talk, see, hear, think, eat, feel emotions and more. I never did take these things for granted because I was raised with a family member who could not walk or talk, and if there's one thing she taught me was to be content whatever the circumstances. I see now she was our family's angel. I didn't know growing up that she'd become my inspiration for living with and through a health condition. I remember her and think of the song by Don McLean, Vincent, in which the singer says "this world was never meant for one as beautiful as you." It was also the song that was playing on a retail store speaker system when I received the call of the trip to the ER, and eventual passing hours later. Moments we don't forget and still impact our lives.

      Lynnie, I think you and I are in the same time frame of treatment. I'm in Cycle 2, wrapped up day 8. Two more treatment days to go before we begin Cycle 3, which changes to every other week. Halleluyah!
      I'm crawling my way there (haha) but we're going to finish this race! I keep reminding myself to just take one day at a time. I prioritize for the day I am living, and if that means rest all day, then, rest it is.
      I use to push myself before this new treatment started. I'm kinder to me now. Self-accepting. Then again, I really don't have much of a choice the day of treatment and for two days after. I'm wiped out.

      On a new side effect, is anyone experiencing dental pain problems?

      Charlie, any chance you can talk with your Oncologist to get back on Dexamethasone with a reduced amount instead of Prednisone? I take only 20 mg of Dexamethasone on infusion day. That's it.
      It's supposed to be a higher dosage but my Oncologist helped me find a balance that will not compromise treatment and still allow me to find sleep, even if only a couple of hours the day of infusion, and a few more hours the day after. Cumulative of maybe 6 hours in two days. AKA zombie.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hi Charlie and Miriam!! Finally have time to sit down and write. BTW my first name is LYNNE no big deal but I made my log in name a name my brothers best friend gave me (Lynnie-Poo) as he had just died of cancer when I signed up on this site.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Ok that is odd. Rest of that paragraph just disappeared. Swell. I guess I start again. I’m not sure what part of the cycle I’m on as I skipped the first week of Pomalyst. I’m also doing treatment on Tuesday not Monday as the holiday messed up the scheduling.
      Have either of you had a low grade fever like 99 degrees for a few days? I don’t feel kill at all just a mini temp. I m a bit dizzy now and then and my eyes are blurry but I can drive no problem. Also have the issues of forgetting words—feel so stupid and annoyed when I can’t remember what I’m trying to say. Grr.
      I drink at least 64 oz of water a day and carry a bottle everywhere. Being neutropenic I try to watch what I eat and hope I’m doing ok.
      It’s all so new and unknown I really am at a loss. We may go to the beach for a few days at New Years but not even sure I should do that. Well. As always phone is loosing power. More later. Best to you both!!

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Good to hear from you Lynne; I think I was spelling it without the e before. When Miriam started with Lynnie I just followed suite. Thanks for clearing that up as I hate misspelling or pronouncing people's name's. I have felt hot but have not had a fever. Being dizzy seems to be a common thread but I have not been since a week ago. Chemo brain is another common issue. I no longer get embarrassed or even fake that I remember. Living in an apartment complex I meet my "new" neighbors multiple times. Now, when I introduce myself I am very honest; "Hi, I'm Charles. I must warn you that I have health issues and may forget that I met you." It has lead to some very good talks with people and just makes things simpler. I also volunteer with the office and maintenance staff here. They are all aware of my memory issues and really help me. I am very meticulous when it comes to documenting things and making lists. The problem is when they ask me to check on something and I don't write it down. Another issue is if I get interrupted before completing a task. One day I forgot where I left my list which had the apartment number of where the list was. Yes, I do get frustrated and at times angry but no one has felt like I do. It's not our fault so don't feel stupid! Annoyed, angry and frustrated yes. Just be up front with people and it makes it a lot easier, even if they don't understand. As I said to Miriam, those who are not going through what we are will never understand. If they are good friends they will just accept that fact. When I perform tasks, like driving, I make sure that I do not get distracted. I still do ok but just don't like to drive. The problem I have with independence is I sometimes feel like a child when I have to deal with people. I like the self check out at stores so I don't have to deal with groceries, money and talking with someone. Take out at restaurants is hard trying to deal with what to get, how much and tip. Again, I usually have lists with me.

      I do intend on discussing why they switched to Pred. but primarily to understand the reason. They made it very clear that they wanted to repeat everything on cycle 3 since it will be my first outpatient. If they still want to proceed I have decided I will go ahead as I do trust them.

      My middle brother was born with crohn's disease. He is my inspiration for dealing with all of this. He fought for 41 years and lived life to the fullest. Along the way he helped so many people deal with their issues. He choose living over letting the disease run his life. Never had time to waste his energy on asking why him or complaining. Look at the three of us!!

      Again, thank you. I have not felt this much at peace emotionally since my heart attack. I really felt alone with no one to truly understand. It is nice to have these discussions without feeling like I'm saying please feel sorry for me.

      Hope you both can enjoy the New Year. Can you believe we are leaving a decade behind and starting a new one?
      Later my friends.

      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charlie, I am also grateful to be in touch with you and Lynne on this journey. There isn't anyone in my treatment center who is undergoing this treatment, so I welcome our communication exchange if only through this medium. It makes a good difference. Thank you both for being here. For sharing your experience, your heart and thoughts.

      It's taking 4-5 days after infusion to recover and feel capable of doing something other than the basics for nutrition and hygiene. The feeling of weakness and dizziness are the most prominent side effects for me. What can I do? Rest. Ride it out reading if my vision isn't blurry, watching a program, journaling, listening to music, sitting in silence, looking out from my deck at the view of nature, and breathing. I recently bought a birdseed tree house and placed it on my deck, and now I get to watch Cardinals and many other kinds of birds visit and eat their fill. : ) It brings me joy. Happiness.

      In keeping with the topic of our treatment, I'm hoping our experience with Darzelex, Dexamethasone, and Pomalyst will reduce our cancer and allow us to be progression-free for 2020, and dare I dream beyond the new year.

      Much love to both, and to anyone who chances upon our ongoing dialogue.
      Miriam

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Good morning and happy new year! So time for a frank discussion to figure things out. Is anyone else having any issues with constipation? I now realize that this started after cycle 2 Even though I thought I was ok, I noticed a change and it became harder to go. I spent new year's eve (day and night) working to resolve things with magnesium citrate but little success. Saw my primary yesterday, abdomen is distended. Went through a second round on trying to resolve this but still having problems.

      I originally thought this was related to prednisone, but this is much worse than I ever remember. The fact that I can't seem to resolve this and that I stopped prednisone on Monday makes me wonder if something else is going on.

      Speaking of being on prednisone, I did have a great talk with my Oncologist about why I was changed to prednisone. Apparently, there are studies that show dexamethasone can interfere with Ticagrelor. That is a blood thinner I'm on and is critical in preventing another heart attack or stroke. Even though there is not much on this yet, they did not want to take any chances with me. We will now talk about either changing the dosage of prednisone, which is weaker than dexamethasone, or going back on dex.

      Charles

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Happy New Year Charlie and Miriam!!
      I did go to the beach with my daughter, grandson and college roommate. Have enjoyed it even tho not really beach weather. Sometimes I just need to get off the reservation so to speak.
      So I finished another treatment and so far doing ok. As I said not sure what cycle as I skipped one week of Pomalyst. My numbers look great as platelets haven’t been this high in ages as well as WBC. Not sure what it means but I’ll take it.
      Charlie, I had constipation from the beginning which Was basically caused by MM and all the pain meds I take. I tried a lot of different things but what has worked for me is miralax in the morning and senecot at night. Dr said as long as it works it’s fine. I was so bad at first I was just miserable. I think it might be a matter of finding what works for you. My cardiologist said to drink coffee and prune juice together. Well that sounded awful as I’m not a coffee drinker nor do I like prune juice so didn’t even try that!
      I haven’t had a heart attack but had to deal with aortic valve replacement three years ago so do see cardiologist every year to make sure my cow valve is working. Due to MM and weak bones I had to have new procedure called TAVR where the new valve is put up the femeral artery pushing old valve out of the way making way for new valve. Having more than one condition to deal with sometimes is overwhelming but you just deal with it.
      Miriam I also enjoy feeding the birds and watching them out my windows. I love gardening and luckily planted a lot of pansies before starting all this. The deer didn’t get them all so I’m watching them grow and listening to the birds. I live near Raleigh NC and Charlie you said you live in Milwaukee.where do you live Miriam? sometimes it’s nice to know where others live.
      I will go for next infusion Monday. My friend is still here to take me which is nice as I have to be there at 7 am. I will have a Monday infusion of Dara for 8 weeks then every other week for 4 months then once a month for however long. Are you both on that schedule? I don’t remember.
      Apologize for the length of this.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charles, any chance Eliquis (blood thinner) would work if changed back to Dex? Are the agents in Ticagrelor similar to Eliquis? Will Eliquis have the same effect as Ticagrelor to prevent blood clots/heart attack?
      I am not sure what is causing my constipation but yes, Charles, I do suffer that side effect. I did not suffer this before treatment started. I was regular, no problem. And I am bloated! Distended like you! Looks like we need to add something to our nutrition to help us. Gotta keep that gut moving.
      Let me know what you add. I'm still thinking about it. Researching. Thanks!

      *******************************************************************************************************
      Lynne, I live near Charlotte, NC. You're only two and a half hours drive away! My daughter lived in Raleigh for four years before she moved to the West coast. I know my way there. : ) Plus, Google maps helps.
      I am on Cycle 2. Completed day 8 today. Day 15 and day 22 left to go, and then I begin every other week for 16 weeks on January 17. I keep the Pomalyst chemo pill regimen as a separate treatment because the start and end dates do not coincide with the Darazalex infusions. I also keep a daily log that lists what I eat, drink, meds and time for each. Today's log looks like this:

      Friday, January 3, 2020 Infusion day
      5:15 a.m. Coffee
      7:00 a.m. Hot wheat cereal with banana; Orange juice; 5 pills Dexamethasone; Eliquis; Acyclovir;
      B12 supplement. 1- 20 ounces bottle of water between 7 and 9 a.m.
      8:15 a.m. At Treatment Ctr: Benadryl infusion, anti-nausea infusion, two Extra Strength Tylenol;
      Darzalez 1400 mg at a graduated rate. (The infusion took 3 1/2 hours)
      10:00 am Snack - a pack of peanut butter crackers.
      2:00 pm Lunch chicken rice soup with avocado, chips, and salsa.
      7:00 p.m. Leftover chicken rice soup and two flour tortillas, hot Lipton tea with milk and honey, and a
      chocolate covered graham cookie for dessert; meds - Eliquis and Acyclovir
      10:00 p.m. (scheduled time to take 2 mg Pomalsyst chemo pill) My cell has a set alarm.

      Water: 1 2 3 4 5 6 7 8 (circle the number) Today I drank 7 glasses of water but the night is still young! I might drink more water. Especially after the Dexamethasone taken today, the no sleep steroid. I count herbal teas as a glass of water too.

      Lynne, I keep track of my side effects in a journal. I write in my journal in the morning and sometimes at night before bed. I record my thoughts and feelings, prayers, plans for the day and future. These practices help me maintain a kind of balance that I feel I lost with "chemo brain." It helps me keep track of meds especially.

      Lynne, I am so very HAPPY to hear your counts are good!!! The treatment is working!!! Thank you GOD! I thank Him for everything. Even when things don't look good to me I trust He is working ALL things for good because I love Him.

      Well, I must bid adieu, until next time, dear friends.
      Love surrounds you both is my prayer and declaration over you for healing and wellness.
      Miriam

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      I am beginning to think that it is the daratumumab causing the constipation. Hopefully, we are all adults and no one will be bothered with what is said. The day after cycle 2 I noticed a complete change in both size and shape of my stool. For three days I only went a little and by the fourth day could not go at all. I did both an enama and magnesium citrate with little results. I have since repeated and finally have some relief but I'm still not good. Also taking miralax three times a day (doctor has okay'd that) and prune juice. The reason for my frankness is because this is serious and we need to "compare notes" because I can't manage it. If either of you are experiencing similar then our doctors need to know this may be more common. I have been constipated before, but never like this.

      Miriam, I developed a blood clot after being off of aspirin for only 7 days on the same day I had my heart attack. My cardiologist made it very clear that we could not stop nor change any of my medications. It is because of this history that they did not want to take a chance that Dex. may interfere with the meds. The main problem I had was not being prepared to deal with prednisone. We have a plan in place this time, which includes taking Prilosec starting tomorrow. I intend to take ambien tomorrow and Monday to hopefully get some good sleep. I was able to sleep the last couple of nights. I really do appreciate your comments and that you are looking out for both Lynne and me. I too used to keep a medical journal and should probably start.

      Lynne, I'm also happy about your counts and you got to go to the beach! With everything that we have been through, I am still optimistic about the treatment. Also, extremely grateful that our paths have crossed. Too cool that you two live so close to each other.

      All for now
      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charles, Lynne,
      I just wanted to check in two days after the infusion. It's the usual sleeplessness for two days after. It's a struggle between my brain and my body. I will eventually succumb to sleep by this evening.
      But this has been the greatest side effect to endure and overcome. I had to set social boundaries to help myself rest. By that I mean, no visits or calls. My personal retreat from the world.

      The constipation is subsiding. I haven't changed any of my eating habits. It's resolving on its own.
      So, there is hope, Charles, as our body fights back.

      This coming Friday, January 10 ends Cycle 2 for me. Yay!
      I'm so ready to start every other week afterward. Relief, please. : )

      One day at a time. I ask myself what I need to get through the next hour, and I do it. It might be as simple as preparing and sipping on a cup of echinacea herbal tea as I listen to an audio version of a book. Or just sit silently watching the birds come to eat the food in the birdhouse. I look for small comforts during the two days after infusion. It's about all I can handle without sleep. Thankful for you guys to let me share this journey with you. Much love. Please be very kind to yourself. We're gonna get through this. Thank you again for listening and caring.
      Mir

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      We ARE so lucky to have connected. It helps so much to be able to talk with you both and to know we aren’t alone going through it. My college roommate is here with me and is very supportive but doesn’t understand a lot of it. We’ve been friends forever but cancer is not in common.
      Maybe once I get past the every week stage we could get together Miriam, that would be awesome. We shall see.
      I go thru treatment # 7 tomorrow. I can’t believe the schedulers put me as having to be there AT 7 AM!!! Yikes. That’s before breakfast!!! Maybe I’ll get home earlier this time. Hope so. I have to pay attention to my neutrophil #’s to make sure I’m ok to eat etc. with no worries. Always something to worry about.
      Hope you both are ok and had a good weekend. Ready for a new week.
      Best to all and I’ll let you know how number 7 goes.
      Lynne

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      I know this is public and hope other people are reading this. That being said, I have to say that I love both you ladies and am grateful we continue to have these discussions.
      Just completed day 22, cycle 3 and my labs still are good. This one was a breeze only taking four hours and no reaction at all. They do think I am one of the 15% who have constipation as a side effect so we have a plan. Miralax three times a day, prune juice for breakfast and more fiber in my diet. Because of that we are keeping the Prednisone for now and I medication for acid.
      Miriam, I too take things hour by hour and never get angry about having cancer. I admit there are times I will let myself feel sorry myself and just cry. But then I realize what is meant by having the strength to fight this. It is just like exercising, you do not build muscles overnight. You have to live with this terrible disease to understand appreciate what it takes to tell it "you are not going to run my life. Okay, I will give you a couple of days from time to time, but then I'm going to beat you". That is were you build the strength to fight cancer. I am not courageous but very scared. If I could not share this with people who understand then that fear becomes loneness.
      Happy thoughts to Lynnie and Miriam and to other people who have cancer, reach out on this site and let your emotions run wild. Lynnie, I really hope 7 is kind to you!
      Oh, yeah it's 4:00am!
      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hey Charles, I think you meant you just wrapped up Cycle 1. : ) Congratulations, dear friend! I feel the first month is the toughest since we don't know how our bodies will respond.

      I'm wrapping up Cycle 2 on Friday, January 10.
      And I have a 7-day break from Pomalyst (much needed) before starting Cycle 3 on Jan 17, which is the cycle that begins infusions every other week. Halleluyah to that!

      I haven't been outdoors since infusion last Friday, Jan 3. Side effects. Looking forward to going out tomorrow to do the grocery shopping for the next homebound period.

      I think the thing that affects me the most during this treatment is isolation. It beats all of the physical side effects I endure. Keeping a journal helps me "talk it out."

      Do you keep a journal Charles or Lynne? If so, how does it help you?

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      My #7 went ok. Was there so early I actually got home in time for lunch!! I’m so confused by the cycle business since I’ve had to adjust chemo. I’ll try to get the pharmacist to get me on track.
      Monday I was a bit dizzy and thick headed is the only way to explain it. Tuesday I was ok except insomnia Tuesday night. Today I am fine. My numbers are still really good which I’m very happy about but not sure what it means in the long run. I will have treatment again this coming Monday then a Pet Scan on Tuesday which they tell me will show if there’s any new cancer and if treatments are cutting down the cancer that had started up.
      Miriam, I don’t keep a journal. I don’t know why, I wish I had started when I was first starting the process in 2011. I guess I just didn’t want to write it all down.
      I hope you both are doing fine and getting over the initial trials and tribulations of this treatment. I do so enjoy keeping up with you both and knowing I’m not alone in this. I wish we’d find some more of us to see other reactions. But I’m happy with the 3 of us. Best to all.
      Lynne

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      I used to keep a journal but never really found it useful. One problem I have is there are so many facets to my health that interact with each other. Not so much a journal, but I do track issues to discuss with my doctors; like "using my inhaler way too much". Never track what I eat. Wear a fitbit which tracks my sleep, how far I walk and resting heart rate. Tried to track water intake but failed at that. Blood pressure device is blue-tooth so I have a record of my blood pressure. This will become my journal and what is great about it is the feedback I get. Again, you mention isolation which is what I was saying about fear leading into loneliness which is isolation. The days I'm forced to stay home scare me because I have no control; there is no pushing through. It also does not help when people tell me "you'll get through this, your just having a bad day". Or "yeah I get it, the other day I was so tired that I just stayed in bed".

      What I was told about "cycles" is each infusion makes for 1 cycle of dara. The period of time between each cycle increases as you go through treatment. So cycle 4 for me will be on day 36, 1-21. I don't do any other type of chemo so that makes it easy. Keeping track of chemo before was easy since I took pills every day for three weeks then one week off. That was a referred to as a "round". WOW!

      My levels are also still good, low, but good. I did do a flu shot this year. Managed to get a couple hours of sleep in this morning. Tolerating the prednisone much better this time around so feeling pretty good.
      Charles

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Good Morning! Just thought I'd check in and see how everyone is doing and provide an update. It seems that post cycle 2 was the worst for me so far. I am glad that we made the decision not to change anything as it has allowed me to evaluate things. The most important item I realize now is I don't think it was the prednisone that caused my issues but rather the Methylprednisolone. That has far more side effects, is given at a higher dose and stays in your system for up to eight days. After cycle 3 I started crashing on Friday right after stopping the prednisone (too soon normally). The last couple of days I have been out of sorts, even though I am starting to catch up on my sleep.
      The other question I would like to understand is this; what exactly is the daratumumab doing to our system? Are we to have any side effects from that (alone) or is it just going to be undetected?
      Next cycle I am going to ask that they reduce the amount of premeds and see how I do.

      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charles, do you mean you just wrapped up Cycle 1? Each Cycle is 4 weeks long and I believe you started treatment Dec 17.

      Yes, the first cycle is tough, but I found Cycle 2 tougher to manage. The side effects lingered longer in my case.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charles,
      Here's how the Darzalex treatment was outlined for me:
      Cycle 1 = days 1, 8, 15, 22 (once a week, every week)
      Cycle 2 = days 1, 8, 15, 22 (once a week, every week)
      Cycle 3 through Cycle 6 = once, every other week

      Treatment is then once a month thereafter.

      Is this your understanding? Let me know. Thanks.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      This is the plan that was laid out for me:

      Daratumumab 16mg/kg:
      - Q7 days for cycle 1 (12/17/19) and cycle2 (12/26/19).
      - Q14 days for cycle 3-6.
      - Q28 days for cycle 7 and beyond.

      Q means every x days

      I was under the impression that each cycle was the day we receive the infusion of daratumumab. My last infusion was 1-7 and my next will be 1-21 (3 & 4).

      What I was saying was that after my second infusion on 12/26 I had more issues then either the first or my third. Currently, I am having issues not being able to taste.

      So, how many infusions have you had?

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Charles, I've only had 8 infusions. Once per week.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hi Charlie and Miriam,
      I’ve been a bit lax in keeping up with this but my only excuse is my college roommate was here for 3 weeks, we babysat my grandson for 3 days, and I’m trying to put Christmas away. Well my roomie left on Sunday and most of Christmas is put away.’
      I just had infusion #8. Infusions have been ok but I really feel off the rest of the day, hard to explain. Just heavy headed and tired. I sleep well that night but the next day I’m a bit off as well and the steroid insomnia kicks in at night. Last night I was up til 2:30. Wonderful.
      I’m so confused by the cycle business I think my brain can’t grasp it even tho it should be easy. I start cycle 3 on the 21st I guess. I will have first infusion of the next round of every other week.
      My lab numbers are still pretty good altho platelets went down again. My neutrophils are just at low normal but drs are ok with that but encourage me not to go out too much.
      I had my pet scan yesterday and my dr is happy—no new lesions and the ones I had are improving. I guess it’s working which is great news!! I’m relieved to say the least. Now if we can control labs etc I’d be really happy. I don’t like having to stay home altho I do nap a lot.
      How are both of you doing? Do you find that you sleep more after infusions and what about steroid insomnia? I only get steroid with infusion now as premed along with Tylenol and .benedryl.
      I hope you both are doing ok and I won’t be so lax as I’m back to my normal life.
      Lynne

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Lynne,
      It looks like you and I are on the same infusion treatment track! I understand the physical feelings you describe after infusion, the day after and insomnia. It's my experience too.

      I resolved the confusion of keeping track of the cycle by posting the appts for infusion in my planner and numbering them. I also keep track of the Pomalyst 21 day on, and 7 days off, that way. I'm the one that has to call the Pharmacy for the refill and this helps me stay organized.

      I begin every other week infusion on Friday, January 17. This is Cycle 3.
      And you start Cycle 3 on Monday the 21st. : ) We made it through the first two cycles. I thank God.
      Yes, I receive Benadryl, Tylenol, and an anti-nausea med before infusion.

      In answer to your other questions, I do not sleep for 36-48 hours after infusion. It's a bad time for me but since I expect it now, I've learned how to deal with it. It really messes with my mind in a not good way, Lynne, but sleep deprivation does this, so I endure and tell myself I will make it through. Dr prescribed sleeping pills but I decided not to take them.

      I am very happy to hear about the good results of your PET scan! Yes! : )

      I also need to take down my Christmas decor. haha...we use to celebrate Epiphany Jan 6 when I was a child and the decor would stay up until around the 14th of January, so it's not unusual for me to still have Christmas decor. Old family tradition.

      Love to both you and Charles.
      I am so very thankful you are both here. I do not have anyone else who is going through this treatment and it helps me so much to "talk" about our experience through this. Thank you for sharing this time with me.
      Miriam

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Hi Miriam and Lynne,
      Great news on the PET Scan Lynne! So it sounds like we are all experiencing some of the same post infusion stuff. I do not sleep either for at least 48 hours and I too expect that. I have not felt myself now since my second treatment, really out of sorts. The newest issue for me is I have lost my taste. What I believe is causing that is Methylprednisolone as it has a long laundry list of side effects and they say it can stay in your system for 8 to 10 days.

      It does seem like you two are on the same page with cycles and treatment. I think the difference between you two and me is the Pomalyst. Maybe because I am only doing daratumumab they look at the term cycle differently. All I know is the plan I posted was discussed back in September and is in my medical records. One of the advantages for me being treated at the Milwaukee VA Hospital is my doctors come over from Froedtert Hospital. Froedtert is a leading medical center in cancer research and treatment. I am sure that every aspect of my treatment plan was established by a team of doctors. Even the first two treatments being inpatient was typical for all patients. Pre-Meds was always Methylprednisolone, Benadryl, and Tylenol. Montelukast was added after I had a bad reaction during the first infusion. They also increased the Methylprednisolone which is why I have to take prednisone for two days after. There did not seem to be much discussion about this decision with my doctors as if they may have been prepared. You know, "if patient has bad reaction then....". As I mentioned, they took me off dex. because of my blood thinner. My primary said she was contacted by another doctor who mentioned a study being done. I think there are a lot of doctors reviewing everything.

      I have told my doctor about you two and she is extremely happy for me. She knows that we have been discussing how treatment is going so I will ask her about the difference in cycle. So, in closing, Miriam is doing her 9th infusion tomorrow. Lynne will do her 9th on the 21st and I will do my 4th the same day. I echo Miriam's closing.

      Charles

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Hello Ladies and WhatNext community.

      Miriam, I see you made the newsletter! Strange, I thought you had commented on my last post. I agree with what you said relating to the plan you and Lynne are on. For me I only have the Dara. to focus on but you both have more going on. Still plan to get an understanding from my doctor.

      So, I just completed my 4th infusion and everything went well. I talked with my doctor about reducing the pre-meds, especially the steroids. She told me that it was not recommended as apparently the risk of reaction to each infusion goes down BECAUSE of the adjusted pre-meds. Dex. is the preferred steroid of choice, but they changed that because of my blood thinners. My only real choice at this point would be to find another drug. Because we are also trying to determine if my neurological issues are related to MM I don't want to do that. Strange how I feel like I have control over my treatment plan but really don't have control over the treatment.

      I did start to journal again as I am noticing a pattern of issues after treatment. My treatment with pre-meds started at 10:00am fowled by 4 hours of infusion starting at 11:00. We started at 100, followed by 150 in an hour and by the second hour were at 200. The Benadryl hit me harder today so I was more tired than normal and got some sleep. That wore off around 8:00pm and my heart rate shot from 60 to 90. Needless to say, I became wired. This was one of the items I noticed last time. My right eye became irritated and watery around 11:00, again something else I went through. I went to sleep around 1:00am and woke up at 3. If history repeats I will start losing my taste Friday or Saturday.

      Truth be told, I did have a little melt down with my husband last night. I am not looking forward to the next ten days and it really got me upset. It is very frustrating that I got my taste back on Sunday although sleep still was eluding me. The constipation is gone but I am very aggressive about that. So grateful I can share this with you and that I can talk to my doctors.

      Since I was feeling somewhat sorry for myself, I decided to help others tonight. It has been a while since I went through questions to look for those I could provide comments to. I also found a person who lives in Milwaukee that joined in August. They not posted anything nor entered information on their journey. I'm thinking of posting a question about helpful tips in dealing with cancer. First up, the importance of finding the right doctor. It seems the three of us have great doctors that we can talk with and look how well our treatments are going. Second up, share and ask questions. Again, look at the three of us! My hope is that this "question" is not too long as to stop some one who could benefit from our collective experiences and the bond I feel we have formed.

      Can't wait to hear from Miriam and Lynne, love both of you
      Charles

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hi Charles and Miriam!!
      Well got through #8 ok but I had to go on Tuesday since Monday was a holiday. Bad bad bad. Way too many people. I arrived at 9 and finished at 5. Yikes!! Labs drawn, saw my oncology nurse practitioner and my pain management dr. Then up to infusion center for Dara and Zometa. WHEW!!!
      Dara went fine but I sure napped even watching tv didn’t keep me awake. I slept ok last night but as usual I’m not tired now and know I’ll be up tonight. I asked about why I’m affected with steroid insomnia the next night and she laughed and said just my luck. Steroids can stay in your system longer than you’d think. Swell.
      Then today I get a letter from my Medicare RX supplier saying my policy doesn’t cover Pom and I’d have to go through authorization from my dr. So wrote her a note then called and talked to authorization people at the insurance company. Then they say I’m ok through 11/20. WHAT??? Make up your mind people. Just about gave me a heart attack given the chemo is working and I don’t have $18,000 a month to pay for it! I can breath easy tho.
      Still have issues with low neutrophil #’s but guess I just have to be careful. Do your labs check your M spike? That’s always been my marker for how I’m doing and definitely set off tests for MM return.
      I’m glad to be in cycle 3 as I have NO dr appointments next week. Yay!! Then my college roommate returns so we babysit my grandson as my daughter has a work trip. She’ll take me to the next infusion. Nice.
      I am so grateful to have found you both. I live in a 55+ community and most are very active.!Hard to talk with people who are all well. My neighbor and I are friends and she has a lot of health issues so we can talk. There is a support group for MM but it on Sat. Mornings at 10 which is early for me. Finding you both has been wonderful and I appreciate our discussions so much.
      Best to both and talk soon.
      Lynne

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Lynne,
      Good to hear from you. Sounds like your having a lot of un-needed stressors going on. It sounds like your infusion center really needs to do a better job of managing their patient load. My last infusion I went in at 7:45 for labs which came back around 9:00. It took an hour for them to get the pre-meds up from pharmacy so that was at 10:00. My center has twelve recliners and six nurses. The section I am in is setup for one on one therapy like with Dara. Again, this is the VA which is very impressive.

      I cannot believe Medicare would not cover ANY proven cancer drug and am so sorry they put you through that. Glad it all got sorted out. As to the steroids, yes, they can stay in your system for up to 10 days. After researching this I believe it is the pre-med steroid that is giving me the most problems and not the prednisone. I too slept most of the day during my infusion.

      My M spike has started to drop, which is the first time I've heard that since SCT. Other blood counts are still good.

      All for now. Talk soon.

      Charles

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Charles
      You are so blessed to be at the VA hospital. I’ve heard good things about most. My hospital is University of North Carolina so it is a teaching hospital. Normally it’s not that bad but since Monday was a holiday all of us that have Monday treatments came on Tuesday. There are about 60 chairs including actual rooms with beds which is what I get if available. With my 5 compression frax the chairs kill my back. Easier to sleep

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Charles and Lynne, : )

      Good to find notes from both today!
      I am especially happy to learn your M-Spike is lowering, Charles!!! Woooohoooo!!! Yay and Halleluyah!!!! : )

      Glad you got the Pomalyst situation cleared up, Lynne. Have you called the Pharmacy that ships out the Pomalyst? There are organizations that will cover the Co-Pay after our Prescription Insurance pays 80%. Ask them about this. I have Medicare, a supplemental Plan F, a prescription plan coverage, and a grant through an organization that will cover my Co-pay for Pomalyst. They divvy things up without me. I just pay the premiums. I thank God for helping me through all of this.

      This is my NO infusion week but guess what my friends? I still have to take the Dexamethasone on Friday as if I were going to infusion. Haha...I thought I could finally sleep and possibly get together with former co-workers and friends during the weekend because I'd be rested. Not happening.
      Who knows? Maybe I will sleep. I'll keep you posted. No rest for the weary...hahaha...

      God bless and keep you both strong and fighting.
      Miriam

      Oh, I forgot to mention. I purchased a portable treadmill (one that folds and can be stored under a bed or stand upright against a wall) as a reward to myself for making it to Cycle 3 despite the stuff I haven't told you about (infusion center drama) and I have been walking for 20 minutes a day. That's about all I can manage for now, and besides, I should start out and increase it slowly. I haven't walked in two years. I use to walk with a co-worker 30 minutes Mon-Fri but I do not have sidewalks or a park nearby to walk on so I got the treadmill. Yay me!! : )
      Ok, bye again for now. Love.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hi Miriam! Glad you got the treadmill. I can’t walk much due to my compression fractures but I try to exercise when I have the energy. Up until it came back I was seeing a physical therapist every other week who gave me exercises to do at home. Hoping to start again . We’ll see if Medicare oks it. I have a gym where I live and can do the recumbent bikes. Exercise is good for us for sure.
      I also have a foundation that pays my copay. My pharmacy that provides my Pomalyst hooked me up this year. Thank goodness, who could afford the copay????
      The pharmacy is very helpful. It’s in Cary and is a specialty pharmacy.
      I’m so GLAD they didn’t tell me I had to take steroids even when no treatment. Next week will feel like a vacation.
      Miriam do you also keep track of youR M spike?? Mine went up A LOT when we first realized it was back but now has gone back down. We’ll see what it is this time. I don’t get those results until a few days afterwards.
      Best to all and keep us up to date.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Lynne, you may wish to ask about the steroids on off week. It's my understanding it's taken because we are on chemo (Pomalyst) and it helps with keeping down inflammation.
      And yes, I receive the Pom from Biologics in Cary, NC too!
      Good to hear they hooked you up with a grant! How else could we afford Pom?
      And yes, I do keep track of all my labs and compare monthly.
      Oncologist prescribed potassium. First time low. I eat food high in potassium. Not enough to help raise level. I will know more about the specialized labs (m spike, IgA and more) at end of Cycle 3.
      Enjoy the free week!!

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hello Charles, Hello Lynne,
      I'm checking in today to ask how you're both doing.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Hi Miriam,

      Funny, but I had been thinking of doing the same. I have been very tired the last few days and the lack is sleep is wearing on me. Along with not being able to taste I have not been in a very good mood. So I met with my doctor last week and we talked about the steroids. For me it's to suppress the immune system from reacting to the Dara. They are going to reduce the Methylprednisolone and drop the Prednisone with the agreement that I report any reaction up to 48 hours after the infusion. My next cycle is Tuesday so I'll let you know. How are you doing? Hope to hear from Lynne.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Charles, good to hear back!
      Honestly, I don't know if I can get through another weekend without sound sleep. I receive the Darzalex infusion and dexamethasone on a Friday morning and I'm still awake on Saturday morning unable to sleep. I may feel exhausted but sleep does not happen. This goes on well into Saturday night at which point I've been awake 36+ hours. My vision becomes blurry, my mind is confused, I feel weak and dizzy. I plan to speak with my oncologist on February 10 which is my next scheduled appt to discuss the dexamethasone side effect. Labs will be drawn that day too, and results will be known one week later. I am praying the pain I endure will render a good report.

      At this point in the treatment, Charles, I am living one hour at a time. I use to say "one day at a time" when this treatment started, but now, that's overwhelming. So, one hour at a time is manageable.

      So, just to recap treatment: I start the 4th cycle Feb 14 and end Feb 28. (every other week)
      I believe Lynne starts 4th cycle in Feb too.

      Charles, are you still on once a week? That's what the first two cycles are for a total of 8 infusions.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Miriam,

      I am currently on every other week now and will have my 5th infusion tomorrow. Only the first two were once a week. Either our definitions of what a cycle is are different because you two are also taking additional medications or it's because of the cancer center. My doctor confirmed that the VA is following guidelines setup by Froedtert Hospital Cancer Center. These guidelines were established based of their experience with other patients. Everyone here refers to a cycle as the day of the infusion. When I was doing Revlamid and Dex 8 years ago I would take Dex every Monday for three weeks and Revlamid everyday for three weeks. Then I would have a week off. This was referred to a round.

      They were giving me 125mg Methylprednisolone but will be dropping it down to 40mg. I was taking 100mg of prednisone for two days after but they are going to drop that. The indication I got was the only reason they are going to do this is because I am very good communicating with my doctor. Since you can have a reaction to Dara for up to 48 hours they really want to know if I have any issues. They have already made one change in their standards giving me the prednisone instead of the Dex. Now they are going to stop that. It takes me about six days before I can get some sleep but I am now starting to get really tired. I wear a Fit Bit which shows I get anywhere from 1 to 2 hours of sleep during that time. Since last week I have had a couple of days were I got 6 hours, but it was not a restful sleep. I too take it hour by hour. My cognitive abilities are all but gone. I have a very hard time remembering things and am getting confused very easy. On Saturday we went out to lunch and got frustrated with all the questions our server asked about my order. I went to the store on Sunday and was overwhelmed between dealing with people and trying to find things.

      Hope Lynne is ok, we still have not heard from her.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      I understand how you feel and what you're experiencing, Charles. Completely. If not for my faith in God I would have given up a long time ago. But I have to believe that even in this He is working things for good.

      As for the difference in our treatment (as I understand from your note) I can see my Oncologist is going by the treatment plan on the Darzalex website. Have you looked at it? Check it out for comparison when you're able to. I'd really like to know if your treatment truly is different than the one Lynne and I are on. Thank you, Charles.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      I found one website that talks about the treatment play you two are on. Yes, mine is totally different except for the pre-medications. My first two infusions were one week apart. The first one was inpatient as was planned for the second but they let me go home. Infusions 3 - 6 are every other week then I go monthly. During my initial research I only went as far as Dara was given by IV and the pre-meds. Until your last post I never dug far enough to see actual treatment plans; most of which do match what you two are doing. When my doctor presented my plan to me it came across as "this is the established plan for all patients". Lowering the dose of my steroids appears to be an exception as was the prednisone. So now I'm not sure why mine is so different then yours or what is posted.

      I can't remember if Lynne had a SCT, did you? Also, I had 5 rounds of Revlamid and Dex then was on a maintenance dose of just Revlamid for about a year. That was also presented as standard.

      I will tell you that I have not had any reactions with only 40mg of the Methylprednisolone and I feel much better 1 day out.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      In answer to your question, Charles, yes, I underwent a Stem Cell Transplant in November of 2016.

      It does sound like you are on a different treatment schedule but maybe it's the right one for you?

      I think what matters is if the treatment is working. There should be a notable difference with each passing month, right? It's a six-month treatment as per Darzalex website and then once a month thereafter.

      I have a new side effect, Charles. I don't even know how to describe it except to say it is comparable to having neuropathy all over and not just in my feet and legs. It's a type of shakiness going on inside all of the time. : ( Don't know what med to attribute it to or just accept it is my body saying it's been fighting for three years.

      I hope Lynne is ok.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      I have the same issue going on Miriam. Because neuropathy has been my primary symptom I am always sensitive to that which is different from my "normal". How I explained it was like I swallowed a vibrator that is reverberating throughout my body. It is very unsettling and totally different than anything I have experienced before. We are thinking it is the Dara since none of the other medications I have been on has done this before. My "typical" neuropathy has become much worse which is the opposite of what we were hoping for.

      How have you been feeling overall? I have not been feeling well at all; border-line fatigue all of the time. Even though I have now been off steroids my sleep is still not good. Some nights I get over six hours of sleep (Fitbit) but it does not feel like it. Mornings have been really bad, getting out of bed just to go sit in a chair. Last night I went to bed at midnight, woke up at 2 and was awake until 4. Then I slept in until 8:30. It is sort of like I am just starting to get sick all of the time. This Wednesday I see my oncologist and will discuss all of this.

      It bothers me we haven't heard from Lynne and there's nothing we can do to check up on her.

      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Charles. Good to hear from you. Thank you for staying in touch and sharing your experience. It truly helps me. Few people understand what we are going through so our connection is very much appreciated.

      Still no word from Lynne. I do pray she is ok. I'm going to think she is busy with company and not online much these days until we hear something.

      I met with my Oncologist yesterday and we talked about the troublesome side effect of the vibrational feeling all over my body and he believes it is the steroid. He tweaked my treatment. I will not take a steroid the fourth Friday which also coincides with the week of no Pomalyst and no Darzalex infusion.
      (I receive infusion every other Friday in case you're wondering where the fourth Friday comes into play.)

      I'm going to start keeping a record of my side effects on a daily basis starting tomorrow when I restart Pomalyst (for 21 days) and begin Cycle 4 of Darzalex and Dex. (Feb 14 & Feb 28 is my cycle 4)
      The record will include daily nutrition, times/doses of med, hydration, sleep, restroom, exercise.
      I haven't created the PDF yet but I will work on it today and will be happy to email a copy to you once done. I'm trying to help myself figure out the good and not so good days, and possible why's.
      I had been tracking my med and food/hydration intake just to help my brain remember what I had done that day, but now the keeping of a record will serve a broader purpose.

      Charles, the week with no Pomalyst, Dex or Darzalex helps me regain physical and mental strength.
      Probably because I can sleep daily for 6 to 7 hours! : )
      Sleep deprivation is harmful in so many ways, so let's see how we can all get daily sleep throughout this treatment.

      Charles, I've been meaning to ask you if you're supplementing with Vitamins?

      Miriam

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hey Charles and Lynne, how are you guys doing?

      I just entered Cycle 4.
      This consists of every other week Darzalex infusion with Dexamethasone pills. (Dexamethasone is also taken on the week I do not receive Darzalex)
      And oral chemo Pomalyst 21 days on, 7 days off.

      The neuropathy has worsened. The "all over body vibrational feeling" is non-stop.
      My Oncologist says it is a side effect of the Dexamethasone steroid and that I should tell him if it continues to worsen.
      This is my latest news with treatment.

      Please let me know how you are doing soon.
      Much love.
      Miriam

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Just a quick note to let you know I’m ok. Had a rough patch a bit ago but am ok now. My peripheral neuropathy is making me crazy but it’s numbness no pain. Also had my college roommate here then she returned to help me wash my grandson while my daughter went to Brussels for work. I will write more tonight just wanted you both to know I’m ok. I’m in my hospital today starting cycle 4. I still don’t really get the cycle business but go by what they tell me. The benedryl is making me sleepy so need a nap. I’ll write more tonight. Can’t keep my eyes open.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Good to hear back, Lynne. No need to push yourself to write. I understand. I was just concerned since we hadn't heard from you in a while and we have no other way to get in touch. Take the time you need to recover and care for yourself. Love.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      So good to hear from you Lynne, quick note is just fine. There is not much we can do if we don't hear from each other but express our concern. This is never to taken as making someone feel bad, we all know the love we share for each other. The neuropathy is getting to us all, which I'll talk about in a moment. Glad you have someone helping you out Lynne and will wait to hear more.

      I met with my Oncologist last week and we discussed stopping treatment. For me, the MM expresses itself AS peripheral neuropathy. This is what drove them to use Revlamid and Dexamethasone before my SCT. Within a month of my first round the neuropathy started subsiding and for six years I did not have issues. With the way the treatment is with Dara. it is hard to realize I have only been under treatment for about six weeks. During this time my neuropathy has become much worse. One thing we talked about was is it the daratumumab or one of the other drugs. The bottom line of the discussion is that we ruled everything else out but the daratumumab. Not only was I on Dexamethasone when things got better the first time, but this time I was on less Dex. for a shorter period of time. They give us solumedrol IV before infusion and recently prednisone for two days after. We do not believe that solumedrol is causing long term issues this quickly and I have been on and off prednisone for decades.

      Now we have reduced the solumedrol and I am no longer taking either prednisone or dex. There is also no indication that Benadryl causes neuropathy. This past week has been very difficult for me. Sleep has not come easily for me and I have been so tired that I cannot literally think clearly. Today I have burning pain radiating from my right hip down my leg. It is so bad that I can barely walk. I have had other weird pain in various areas of my body that lasts from an hour to a day. Last night and the night before I had pain in my cheek on the left side of my face. It came and then went.

      It now seems that the only medication we have in common is the daratumumab. I told my doctor that I would ask you two to discuss the possibility of daratumumab causing our neuropathy. With my latest comments, what do you think?

      I have made the decision that I want to keep going with daratumumab and at least bring my levels below smoldering MM. Once we do that we will see what happens with the neuropathy.

      The cycle "thing" is crazy but my doctor keeps insisting this is the way they do it. I am correct that the plan comes from Froedtert Cancer Center and they are actively involved with my case. My doctor's attending physician is part of the cancer treatment / transplant team and was on the phone while we were talking. It was a team decision to let them lower the steroids and the team is very interested in how I am doing. I think they are happy I'm going to continue with treatment but made it clear it was my decision if I wanted to stop.

      Once again, so glad I am going through this with you two. Much love.

      Charles

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      I’m WAY too tired to write tonite, I was at hospital for 8 hours as I saw dr today as well as getting infusion. One question I have for you Charlie is are you taking any chemo at all?. My dr feels neuropathy is from the Pomalyst. It started about three years into my 7 year treatment with revlamid. It is a tad worse with Pomalyst but not
      Much. We talked about it today actually. I use the CBD cream which helps. She also said some drs put patients on magnesium. My magnesium is ok but she suggested topical magnesium. I’ll try that too. Have your drs said anything about magnesium? Just wanted to put that out there before I go to sleep. Ha ha steroid insomnia might hit tonight but usually not til Tuesday night.
      I will write more tomorrow. Hope you are good Miriam. More tomorrow
      Love you both and I appreciate you both so much.
      Lynne

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      The "cycle thing" you mention, Charles, is on the Darzalez website, and it's what my Oncologist follows. It is based on the results from clinical trials. I'm not sure why your Medical Team does not follow it too. At least it doesn't sound to me from your posts like they do. Did you ask them if they consulted with the Darzalex website for the treatment schedule? Just wondering. Thanks.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Charles, Lynne, I am in really bad shape today. I don't know what happened. Chills, shakes, fever, nausea, shortness of breath, dizzy, weak. I sent my oncologist an email. I didn't call because his response is "go to the ER." And I don't have the energy or mindset to explain anything to anyone in ER. I'm going to ride this out and hope Tylenol extra strength will control the fever and staying hydrated with water. I think it's the oral chemo Pomalyst.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Miriam
      It sounds more like some virus than reaction to Pom. Especially if you have a fever! I sure hope you are feeling better. Are your neutrophil numbers good. I had treatment yesterday and my labs are really good EXCEPT for absolute neutrophil. That and WBC are low which means I have to be very careful going out and coming in contact with viruses etc.
      I finally have figured out how my cancer team does the cycles. It’s so easy I’m embarrassed I didn’t figure it out. Cycle 1 was the first time I had the infusion. Cycle changes 28 days later. So yesterday was the beginning of Cycle 4 for me. At least I understand that. Wish I could understand why my neutrophils are so low. I’m very tired and have little energy but am going to try physical therapy on my weak off. Dr staff got it set up and is only 10 minutes from my house. I’ll just have to explain the need for being away from germs.
      Charlie:
      Did your drs ever say why they are not doing chemo along with the infusion? I hope you are good staying on the treatment. It’s hard sometimes trying to second guess the doctors and make our own decisions. My neuropathy started halfway thru my maintenance chemo on Revlamid. I guess the Pom can also cause it as it does seem to be a bit worse. It’s annoying more than anything else. Starts on my toes to half way up my calves. Just numbness tingling no pain. I do take 500 mg of Gabapentin which helps a lot. 300 at night and 200 in the morning. As I mentioned before I do the CBD cream at night. My dr mentioned topical magnesium which I’ll try too.
      I hope to get out tomorrow for a bit. My grandson has been sick so I’ve been staying away from them. Don’t need to catch anything. My hospital has a nurse triage line I call if I’m not well or a fever over 100.5. If they have space I can go to the infusion center and they will run tests etc. if not I do go to the hospital ER and they put me in a room to avoid catching anything else.
      Hope you both feel better soon. I think of you both often and wonder how you are.
      Lynne

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Lynne, I am so very happy to hear that your labs are good! This means the treatment is working! That's the goal. : ) Yay!! You asked about my absolute neutrophils? As far as I know, they are within the normal range. The thing I am most concerned about is my Glucose level. It spikes during treatment. : ( The oncologist will conduct an A1C test next visit. I pray I do not have to take any medication for Type 2 Diabetes.
      I appreciate your mentioning Magnesium! I researched it and decided to buy a bottle of Magnesium from LiveWell Labs Nutrition, called "MagWell." It has good reviews.
      There's also topical magnesium like you mentioned sold by other companies. I may go for topical next if the pills don't agree with my stomach. Thank you for telling us about this! : ) I am amazed about all the good magnesium can do for us!

      By the way, my symptoms subsided in the wee morning hours today. No more chills, shakes, fever, nausea/stomach pain or shortness of breath. Thankful for the fellowship from the church I attend (when I can) who lifted me up in prayer.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Glad to hear from everyone, even though it sounds like we are all going through a rough patch. Instead of getting my 6th infusion yesterday I spent the day in ER. I had too many issues going on so they thought best to hold off. Everyone believes the back pain, which has now gone down my right leg, is neurological. I can barely get around today using two crutches and the burning pain. My labs are good and I am scheduled for my 6th infusion in two weeks.

      When they first started talking about daratumumab I was only focused on what it was and what it does. Frankly, I think their website is terrible and very difficult to navigate. Since I knew they were going to do infusions I never looked at "How is it given" under Darzalex Treatment. The "what to expect" page was pointless. I turned to other sites for most of my information. When you two first started talking about cycles I assumed we were all on the same page except that you both were taking Pomalyst. I was on a 28 day cycle with Revlamid and Dex. which seem to be the other days you were talking about. Miriam, after you talked about the schedule on the Darzalex Site I started digging and finally found it. There appear to be four schedules under relapsing with one that shows Pomalyst and Dex and another that shows just monotherapy. Since everything looks the same it did not even come close to providing any clarity.

      I find several areas of all three of our treatment plans very interesting. The first item is Froedtert plans at least the first infusion to be inpatient. From what we all went through this appears to be a good idea (not right or wrong). The primary reasons I was given for this were: The uncertainty of how long the infusion would last; possibility of reaction and twenty-four hour close supervision after infusion. Another area that we all have in common are the pre-medications one hour before infusion. Also, getting labs before each treatment. Those are all recommend plans which we have all shared. With the only exception from when we all started this journey being I went inpatient, which proved to be beneficial for me, I was comfortable we were all on the same page.

      The reason why I am not doing any other chemo drugs is because they want to target just the MM. We are trying to determine if my neuropathy is associated with the MM. They have proven that my neuropathy got worse as my M Spike proteins increased. Between 2007 and 2011 both my symptoms and proteins went up and down together. After my SCT I went six years without any major neurological symptoms. There is a possibility that the Revlamid, dexamethasone or even the SCT could have resolved another cause of my neuropathy. If it is not associated with MM then all of that would be over-kill to repeat and treat just the neuropathy. Our goal is now to lower my proteins and see if there is any resolution to my neuropathy.

      You both appear to have other medical issues associated with your MM. I do not have any other medical issues associated with MM. The only reason I went through chemo 8 years ago was it was the only option available based off the facts we had. They would never have even looked for MM back then, let alone put me through chemo, if not for the neuropathy. With targeted treatment we now have a chance to see if I have a separate issue or verify the association.

      My biggest concern now is that my neuropathy has gotten worse in the last month. They choose Revlamid and dexamethasone back then because both have the least neurological side effects. I have been on high doses of Prednisone in the past without neuro side effects. I have not researched Pomalyst and only you two have that drug in common. This is why my focus keeps going back to the neuropathy between all three of us. If the Darzalex is causing our neuropathy then this will be different then when I went through chemo. My neuropathy actually started to lesson within the first month of treatment back in[phone number redacted]. I have made it clear to my doctor that I want to continue treatment and get the MM down. I will deal with the neuropathy for now. When things calm down I will talk with my doctor about where they came up with my schedule. For now, I have had five infusions. I have two more that are every other week. Once those two are over I will go monthly. After 8 infusions we will evaluate things.

      It cannot be said enough, I am so glad the three of us found each other. There is a lot to be said when three strangers are comfortable expressing their love for each other. Miriam, I share your dislike for ER even though yesterday was not bad. Hope you start to feel better. Lynne, I hope you can get out tomorrow. Both of you, stay strong and write when you can. Even to say "I'm ok but don't have time to write".

      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi Lynne and Charles, just checking in to see how both are doing, and update you on my treatment.

      I begin Cycle 5 this coming Friday, Feb 28. (I think Lynne begins Cycle 5 on Monday, March 2?)

      I'm thankful it is every other week because it's taking longer to recover from the infusion.
      Neuropathy is worsening but I'm tolerating it. Believe it or not, I put Vick's VapoRub (lavender scent) on my feet at bedtime and it helps a little. I still experience the vibrational interior shake. Stomach pain. But insomnia after the infusion is not bad anymore! I think adding the supplement Magnesium really works! I was able to sleep 5 hours the night of infusion. That's a first since treatment started and I have been sleeping 6-7 hours every night since! Being able to sleep has made a good difference for me. So, thanks again, Lynne, for telling me about Magnesium. And thank your Doctor for me! : ) I would not have been experiencing this breakthrough otherwise. So, you see, being connected here can help us somehow.
      Thank you for being there, Charles and Lynne, and for sharing your journey.
      Hope to find news from you both soon.

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hello Miriam and Charles!
      You are correct Miriam I start cycle 5 on Monday March 2. You are a weekend ahead of me. Now that I’ve figured out the cycles I don’t even have to look at my calendar. : ).
      I don’t understand the neuropathy. Is it from the Dara or the Pomalyst? Mine started with Revlamid and now has gotten a bit worse . If Charles is having issues with it it must be Dara since he doesn’t take Pomalyst. I just reread your discussion of your neuropathy and I’m even more confused. If it’s caused by the MM then mine should be better as my m spike has never been lower since this started. I don’t think it’s the Dex as for the 7 years I took maintenance Revlamid I never took Dex. All I can say is that everyone truly reacts differently to all of these drugs and treatments.
      I’m feeling tired as usual. I was supposed to go to my GP yesterday but cancelled as my neutrophils are so low I’m afraid of going into the drs office and catching something else. There’s a lot of flu going around as well as colds. I’m waiting for them to call and I will talk to them about rescheduling. I do Start PT today but they are really good about wiping everything down after each patient. I need to get over this fear of catching something as I’m so tired of sitting inside.
      Hope you are both ok. I know you start cycle 5 Friday. I hope it goes well and I’ll be right after you on Monday.

      Love to you both!! Lynne

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Hello Lynne and Miriam,
      So good to hear from both of you. I started writing yesterday but got side-tracked and never finished. This has been a really bad week for me, not only with the neuropathy but with the VA. I have not had neuropathy so bad that I was barely able to walk for about 10 years. It is starting to get better and am now only using one cane. I am really upset that we missed an opportunity to possible understand what was going on because the doctor in ER treated this like chronic back pain. This is what had happened so many times in the past; doctors don't believe in neuropathy causing back issues.

      Instead of doing an MRI they just did a CT scan and that was of my abdomen! They gave me medication for muscle spasms which did not help with the pain. No neurological work up was done and I was sent home with instructions on dealing with chronic back pain. My oncologist was not happy about this either and ordered an MRI for tomorrow. I also am going to see a rheumatologist next week. Unfortunately, she also put my treatment on hold until we get some results from all of this.

      Lynne, back in 2007- 2010 I had a very good neurologist and oncologist who worked together with my medical issues. What they determined was a direct correlation between my neuropathy and m spike. This is something that I know that I have said before but want to stress now. MM manifests differently in people so I would not say neuropathy is from MM with you. As has also been said, most drugs used in the treatment of MM cause some form / degree of neuropathy. This has always driven how they treat me with any medication. Fortunately, I have learned to understand the difference between MY neuropathy and that which is caused by medications. The first three times I was given Dara I had tingling and numbness in my hands immediately after the infusion started. This was not how MY neuropathy expressed itself. Up to last week with my back my neuropathy was getting worse. This was more of a numbing feeling along with my feet and legs "falling asleep". There was some differences I notices but could not really explain. When explaining my last heart attack I said "I have never had a hot poker stabbed into my chest so it is kinda hard to explain the pain".

      At this point, we still do not know if it is the Dara or just the course of my neuropathy. The fact that both of you are experiencing neuropathy is leading me to believe it is the Dara. While I was taking Revlamid and Dex. my neuropathy improved within 30 days. It was about a year later that I started having a different type of neuropathy which, through talking with people, was attributed to the Revlamid. From my understanding, it takes a while for neuropathy from Revlamid to develop, You could no be in the same boat I am in, is this different then what I have been experiencing.

      We all know MM and drugs affect people differently, which is why I love this site so much. It is also why I'm glad the three of us communicate so well. We have already started to write a book on living with MM and dealing with treatment. All three of us are extremely objective when it comes to what we are going through. I don't think I've ever seen "me too" written between us. We have a chance to determine if Dara does, in fact cause or exacerbate neuropathy! Again, I'm a little selfish here because I really need to understand that. So, Lynne, could your confusion be that your neuropathy is different than what you had before you started Dara? Miriam, have you had neuropathy before starting Dara?

      One item I also noticed is that it seems like magnesium is helping both of you with sleep? If that is the case then I am going to go out and get some. I am still not sleeping even though it has now been three weeks since my last infusion. I think my Fitbit is trying to tell me somethin, because my trends are totally different. Even if I go to bed and midnight, the Fitbit shows I fell asleep around 2. I can take a nap and the Fitbit will accurately show I fell asleep at 9:00am and woke up at 11:00am. It is the deep sleep and REM that determine how restful my sleep was and usually I don't get enough of either.

      Please let me know about the magnesium and think about your neuropathy.

      Love to you both
      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hello Charles, Hello Lynne,
      I am just checking in to see how you're both doing.
      Maybe you can share how things are in your neck of the woods regarding the Coronavirus situation.
      Hope to hear back soon.

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      By the way, my email address is: [email redacted]

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      I think I'm not allowed to share my email address? I see it was redacted. I didn't remove it.

      over 1 year ago
    • Charlieb's Avatar
      Charlieb

      Hi everyone,
      I am so glad to hear from you Miriam! I have started writing several times but kept getting side tracked. For the most part, I have not been doing well at all. They have determined I do not have any auto-immune diseases and that my back issue is not a result of treatment. In fact, they went on to say it is totally separate from my neurological issues. However, now my oncologist does not want to make the decision to start me back up on dara. After much discussion she wants to send me back to the neuro muscular doctor who specializes in MM effects. He was the one who started us down the path we were on. The problem is, before I could get in to see him the Coronavirus Outbreak hit and so now we have another layer of complications. Meanwhile, my back and right side still hurt and sleep eludes me. Some days I am so tired I can't think. Some of my neurological issues have subsided.

      The situation with me is I am extremely vulnerable to ANY type of upper respiratory illness. My husband fortunately started preparing the week before everything went to XXX (sorry). He started stocking up the house and prepare for long term isolation. He did not go crazy like some people and overbuy things and planned on re-stocking within a couple of weeks. The problem is, since this virus is so contagious we know that I cannot leave the house and go out in public for any reason. We are also, now, concerned, that Jon could get infected and bring it home. That means he will no longer risk going out in public so we are explore delivery services.

      As of this morning, there were 223 cases in Milwaukee with 5 deaths. One person who was infected was a teacher at a school only 10 blocks from the house. Also, an office building were a friend of ours works had a reported case. She is now is in self quarantine. We started out last week with only three people who all had traveled overseas. Now it is strictly person to person. Only essential business are now aloud to be opened. Most of our friends are working from home.

      Ok. Let me try this. My email address is [email redacted].

      Hope to hear from Lynne. Love you both.

      Charles

      over 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hey Charles,
      It is such a relief to hear from you! I see you tried to give us your email address too but it's redacted.
      I guess the What Next program redacts the email address automatically. I wonder if we can fool it? Haha let's see, my email address is my name:
      miriamRmarino and then just add the @gmail.com

      So, you're no longer in treatment with Darzlalex? Is this because you're in a stage of remission? This would be my hope for you.
      In any case, it is just good to know you and your family are ok.

      I am taking the same precautions I have taken for the past two years in treatment. I live isolated and have groceries and more delivered so, the "stay at home" is nothing new to me. Praying this too shall pass and people can get back to their jobs, kids to school, and all business resume.

      As for my treatment, it is working, I thank God. It gets difficult, Charles, but I push through prayerfully. I hope to see my family in NY and CA once treatment dwindles down to once a month. I'll probably have to drive. It's ok. I haven't seen a whole lot of America except in photos.

      Much love, always.
      May you and Jon be well.
      Miriam

      over 1 year ago
    • lynniepoo's Avatar
      lynniepoo

      Hi Charles and Miriam!!
      So good to hear from you both!!
      This has certainly been an interesting, frustrating and scary few weeks. I have been self isolating since Leap Year Day. Only place I’ve really been is for treatment, the pharmacy pickup, and to a plant nursery to buy a few plants (outside only)With my neighbor . I’ve been ordering groceries for delivery(trying the different stores to see who is best) and ordering things online. I haven’t seen my kids and grandkids as they are at home too. Grocery stores have long wait times for delivery and are out of some things I’d like to get. I REALLY don’t “get” the TP shortage—doesn’t know what it says about us. My daughter found a butcher who had everything so that helped. I think I’m ok for about three weeks. I’m a little unnerved tho about the idea of opening up the country so to speak. It makes me feel as if I’m disposable.
      I started cycle 5 on the 16th so this coming Monday will have to go again. My hospital is being very careful and implementing many restrictive practices—even my pain management dr is working from home when she can. I’m going to have to drive myself I think as it’s hard to be sure about Uber . Drs tell me to stay home and avoid people. Swell.
      Charlie I am so sorry your treatment is causing so many issues. It sounds so confusing to me but I know you are on top of it. I wish they could find a treatment that would help everything. Are you on any treatment now chemo or whatever?
      Miriam you are at the same place I am. You have infusion Friday correct? The drs keep telling me they are working on an injection instead of infusion for Dara and we CAN do it even tho we started it in infusion. How is your peripheral neuropathy? I’m still using the topical magnesium and it does help. I’m on 600mg Gabapentin half in the morning half at night. My numbers are still doing great and my oncologist is very happy. Platelets are great, M spike wonderful. Absolute neutrophils still way too low hence my low immunity. Once I get down to once a month we’ll do pet scan etc.
      I watch tv a lot, read, work in my yard and talk to friends on the phone to keep me sane. I’ve ordered plants from nurseries online so hope they come soon. I’m feeding the birds which is amusing when the argue over it.
      How did we manage to have cancer and have to deal with this virus as well. It’s too much. All I want to do is hug my grandkids .....
      Take care you two. I’m going to try to email you now Miriam!!
      Keep in touch please and now that I have supplies I won’t worry so much unless they do open us for business. Love you both and think about you so often.
      Lynne

      over 1 year ago
    • JazzQueen's Avatar
      JazzQueen

      Hi. Just seeing your post. I've recently started Daratumumab. Luckily, I have experienced no side effects save the craving to overeat because of the steroids given me. Okay, and a little crankiness too. I am sorry to hear of your experience.

      I see a lot of neuropathy in the above posts. MASSAGE, MASSAGE, MASSAGE .. "KEEP IT PINK"!!! Wherever you are experiencing neuropathy ... you want to keep it highly oxygenated which means maintaining a consistent pink color to the area ... it helps heal the neuropathy and at the very least helps to keep it from totally ruining your body parts. I had it in my feet. My feet are fine now because I massaged them whenever I sat down, I also used a couple different types of foot massagers and COMPRESSION SOCKS. As far as supplements, Acetyl-L-Carnitine & Alpha Lipoic acid, Calcium/Magnesium/Zinc, and MSM helped A LOT. The first set helps the nerve not to be damaged in the first place .. the MSM helps to keep the cells free of plaque which helps with everything ... the calcium/magnesium/zinc helps to keep your calcium levels up, the magnesium helps you to relax, the zinc helps your immune system stay strong. I can tell when I'm low! :-)

      Hope that helps the neuropathy people ... stay strong during the pandemic. Stay home, and for God's sake WEAR YOUR MASK FROM THE MOMENT YOU STEP OUTSIDE UNTIL THE TIME YOU COME BACK. It's important.

      about 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      Hi JazzQueen!
      Thank you for stopping in, and the supplement info. Fantastic! Thanks! : )

      I am on maintenance with Darzalex once a month, Dex and Pomalyst.
      Thankful still here.

      Yes, I wear a mask when not at home, for sure. Thanks, again and be well, JazzQueen.

      about 1 year ago
    • JazzQueen's Avatar
      JazzQueen

      Wow. That was quick. Does the Dex make you hungry and cranky too?

      about 1 year ago
    • JazzQueen's Avatar
      JazzQueen

      And just for the record .. I PLAN ON being well. I plan every day to be well, without weird symptoms and reactions and to have everything go smoothly as soft butter. :-) I tell that to my doctor each time there is something new to contend with. And gladly ... so far so good!!! :-) <3

      about 1 year ago
    • MiriamMarino's Avatar
      MiriamMarino

      My side effect after taking Dex is sleeplessness that lasts for 36+ hours.

      Good attitude, JazzQueen. : )

      about 1 year ago

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