• Charlieb's Avatar

    Charlieb wrote on Dabbie's wall

    Dabbie,
    Welcome to WhatNex. This is an awesome site not only for support but also answers. I also live in Milwaukee and have Multiple Myeloma. Currently undergoing my second round of treatment.

    Would be interested in knowing where you are in your journey and, if undergoing treatment, where. Please feel free to ask questions of me, or this group.

    Charles

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    Charlieb asked a questionMultiple Myeloma

    Sharing the Journey of daratumumab (DARZALEX®)

    67 answers
    • 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.

      1 day 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

      1 day 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

      1 day ago