• Anyone taking Verzenio or Ibrance

    Asked by attypatty on Wednesday, February 28, 2018

    Anyone taking Verzenio or Ibrance

    Is anyone taking Verzenio or Ibrance for metastatic breast cancer? I have been taking Verzenio for almost 2 months after my cancer metastasized to my spine and the side effects are almost unbearable. Wondering if it gets better with time?

    29 Answers from the Community

    29 answers
    • carm's Avatar
      carm

      What side effect are you referring to? Is it the diarrhea...if so, it will get better over time however it should be lightening up by now. I am curious to hear your answer.

      over 1 year ago
    • JudyW's Avatar
      JudyW

      I'm on Ibrance. My side effects have the most to do with my energy level and white/red blood cell counts. When I first started on it, I'd have weird dreams for several days after starting a new month. In addition, my hair is so thin that I just keep my head shaved. I've had a little problem with mouth sores which I handle with twice daily long rinses with Listerine.

      over 1 year ago
    • Ilenealizah's Avatar
      Ilenealizah

      I too am on Ibrance and like JudyW, I’ve got all but weird dreams and my hair has thinned but not as much. My stomach problems are constipation and very slow motility, with hard stools, I’ve tried every single remedy so please no lists of what works, if it exists as a home remedy, homeopathic treatment, or medical treatment I’ve tried it. I also have no appetite and can’t sleep for the first 10 days on and my tummy is a wreck on the week off. My energy was very low but I responded well after three months so my onc took me down 25 mgs to100 this month. I also take it with food in the evening. I usually sleep pretty well, but come to think of it I have some vivid dreams, too.

      If you’ve had further metastasis and debilitating side effects it would seem your oncologist should make a decision with you to either lower your dosage, add another therapy and meds for side effects, move to a different chemotherapy altogether or some combination. I don’t know much about your mets, but definitely talk to your onc and if you don’t get satisfactory help, get another opinion. I did read about Verzinio today and the bouts of bad diarrhea as a side effect that Lily states you should tell your doctor about right away.

      Good luck keep us posted. It’s important for us all to know what's in the therapy pipeline.

      over 1 year ago
    • MoveIt2012's Avatar
      MoveIt2012

      I’m on ibrance as well. I take mine in the morning. So far my only SE are Fatigue and random dizziness. The fatigue builds through the cycle. The femara I take causes some nauseousness but it’s been manageable so far. Good luck.

      over 1 year ago
    • Dee101's Avatar
      Dee101

      I was on Ibrance for a little while about 2 weeks but my red/white cell count dipped so badly and I couldn't breathe. My onc took me off however my cell count wouldnt rise and I ended up getting a tranfusion and a bone marrow biopsy. Now waiting for the results and figuring out the next step.

      over 1 year ago
    • attypatty's Avatar
      attypatty

      I have has some hair thinning, but I tend not to worry about that too much. If I looked as good as Judy, I would be tempted to shave the hair to a short haircut! I also had a bad mouth infection the first month, but my dentist gave me some prescription mouth wash which solved that problem. In answer to Carm, the diarrhea has gotten a little better this month but it's still present. I take Zofran for the nausea, which causes constipation, but helps to eliminate the diarrhea. I take anti-diarrheal meds almost every day, but if I skip a day because of constipation, the diarrhea comes back and lasts a day or two. So I am still struggling to adjust. To Dee - I am sorry to hear that the thing that's supposed to help us caused such suffering. My thoughts and prayers that the biopsy results will be ok and you can find something else that works. To Ilena- my onc is monitoring me closely. I haven't had any other mets besides the spine tumor - nothing else shows up in any scans. I have a PET scan in a week and she will evaluate the results and we will make a decision whether to lower the dosage, keep on track as is, or switch to Ibrance. I am learning to live with breast cancer as a chronic disease, as are all of you. It's no picnic, but at least we are here to enjoy a real picnic from time to time. One positive side effect - I have lost some weight without really trying. It can be a side effect of Verzenio, or it could be I just can't eat as much. Or it could be things run through me more quickly. Who knows???
      PS- is there an online support group for Stage IV breast cancer thrivors - maybe one devoted to those of us taking Ibrance, Verzenio or Lymparza? It seems we have a lot of the same concerns.

      over 1 year ago
    • EmpathAgain's Avatar
      EmpathAgain

      I'm currently on Ibrance and have been taking it for about 3 months now. I have had a few side effects, but honestly, I was surprised at how few compared to the first time I underwent cancer treatments (that was for stage II, but I had to have 2 chemotherapy drugs intravenously pumping through me for 6 hours in a day, once a day each week. That, plus Neulasta for white blood cell generation, made me feel miserable pretty much all the time).

      Now I have stage IV, which is scarier and more painful, but my chemotherapy regimen is not. I am on hormonal therapy and Ibrance at the moment. The hormone changes have been strange for me since I am only 34 and so was pre-menopausal when first diagnosed. Adjusting to those side effects was also harder for me than Ibrance. With Ibrance I sometimes have intermittent fatigue throughout the day or feel nauseous/dizzy, but besides that, Ibrance has not had many negative side effects (at least that I am aware of) for myself. My hair seems fine for now, but 1.) I have only been on the meds for 3 months so I suppose that could change and 2.) I have extremely thick hair, so it thinning a little really isn't that noticeable.

      There are online support groups for stage IV breast cancer survivors, but the ones I've found have just had something lacking. I would like to find a place where there is accurate and informative, but also a supportive presence as well. I usually only see one or the other and even then the info and presence is lacking tremendously. Part of the reason is that even the medical community is at a loss when it comes to how to approach stage IV patients most of the time and then when it comes to a supportive community, I think that metastatic patients have been kind of shunned away from being a visible part of the breast cancer community for so long that they don't know where to turn to themselves. Everybody wants to be a survivor and seeing metastatic patients is a reminder that this disease is not just something you tough through and fight and then you're okay for the rest of your life. Metastatic patients are a reminder that this disease is still killing people and there really is nothing close to a "cure" readily available to patients yet.

      The lack of resources, visibility, and representation given to stage IV patients compared to all others makes me feel like I want to start something of my own or at least make my face seen and voice heard. Research dollars don't go to eradicating cancer in stage IV patients and it seems like more advocacy can be done there as well. I just have to figure out how to get it out there, I guess. For now WhatNext is an excellent forum to get information from others experiencing similar issues, but I find that too many people weigh in with unsubstantiated claims about how to "cure" cancer and there are too many people repeating the whole "Be happy and grateful and smile and buy pink for life!" mantra, which, yes I am happy and grateful for certain things in my life, but I want to express raw real emotion too. I am going to die from this after all, shouldn't I at least be able to complain every once in a while or get mad or freak out about it? Yes. I am still active and living as full of a life as I can, but I am realistic about what cancer has taken away from me and the reality that it is almost certain that I will die before I am 40. And I just can't sit here and smile about that.

      over 1 year ago
    • PinkPeony's Avatar
      PinkPeony

      I was on Ibrance and Faslodex for almost a year. It stopped working at the 8th or 9th month. The first two months I felt OK, but soon after that felt quite bad. It was almost impossible to summons the energy to do much of snything. Best wishes to you.

      over 1 year ago
    • fluteplayer's Avatar
      fluteplayer

      On Ibrance for 6 months. Tumor markers kept climbing and new tumor on scan. Wbc were only 2.2 and rbc really low too. Every month had to get 2 really painful shots in rear. Had a copayof 400 for them .Next month switched to verconia. Hope the runs don't happen but take merilax for the side effects of oxcys for pain.

      over 1 year ago
    • Dee101's Avatar
      Dee101

      I was on Ibrance at first they had me on a reg dosage but my blood counts tanked and my markers kept going up. My onc took me off for a few weeks gave me a bone marrow biopsy which came back positive. My onc. tried to lower my dose of Ibrance again my blood counts tanked so now Im waiting to see what the next step is.

      over 1 year ago
    • JaneyG's Avatar
      JaneyG

      I have been taking Ibrace and Letrozole for two and a half years. I have had many good days and very few bad days. My side effects have ranged from mouth sores in the early days to stiffness when I stand. I have also experienced neurapathy in my hands and arms, which I just rub peppermint oil on and it seems to help. When I have fatigue I just give into it and nap. I really am amazed and grateful that I have responded so well to this medication but feel sadness for the other women who are struggling with treatment. Cancer is not fun and there are days (my few bad days) when I am reduced to tears.

      over 1 year ago
    • DaviesR's Avatar
      DaviesR

      Hi, there. Metastatic breast cancer in my bones, diagnosed at the end of December 2014, after original, primary breast cancer found in June of 2000. I was on Ibrance/Letrozole for about 1 year (started Ibrance as soon as it was FDA approved) since diagnosis of metastatic breast cancer. After about a year, my markers jumped up and I was immediately switched from Letrozole to Faslodex shots and, subsequently, tumor markers lowered significantly for months. Now that my tumor markers have been on the rise each month for quite a few months, my oncologist wants to switch me to a Verzenio/Faslodex regimen. I'm concerned, because there is no guarantee that the Verzenio will work as well as the Ibrance (until it became less effective), or even work at all, and my side effects have so far been manageable. Although my tumor markers have been rising, there is no change in bone scans and PET/CT scans...had those two scans again yesterday and the day before, now waiting for results. It seems my moments of anxiety are worse than the typical side effects of the Ibrance/Faslodex regimen, but I work hard to get into a more peaceful state of mind. I'm wondering if anyone has switched from Ibrance to Verzenio and might have any comments. Thanks!!

      over 1 year ago
    • fluteplayer's Avatar
      fluteplayer

      How does anyone stand the painful shots?And to think I pay 398 a month to be in pain from them.compared to having your nails pulled out.They say they have to get in the muscle Only time I wished my butt bigger...Not working anyway as new tumors and tumor markers kept rising

      over 1 year ago
    • nataliainsun's Avatar
      nataliainsun

      Flute player - what I do that greatly helps reduce pain with the shots is use cold packs. The nurse gives me cold packs to apply to the areas about 15 min prior or she uses the freeze spray. Then when the shots are given simultaneously, they don’t hurt. You can keep the cold packs on afterwards as well to keep the areas numb.

      over 1 year ago
    • nataliainsun's Avatar
      nataliainsun

      I was on Ibrance/faslodex for 2 years and when progression showed in my scans I was switched to Verzenio/faslodex two weeks ago. I have had very bad diarrhea and stomach cramps for the past 8 days. I read about the protocol that was used to treat this side effect during the phase one trials. I am going to ask my doctor about it tomorrow. Has anyone used it? It involved Imodium, Pepto Bismol, probiotics, and Gatorade.

      over 1 year ago
    • pianoplayer's Avatar
      pianoplayer

      I agree what EmpathAgain has to say about this horrible cancer. I also want to scream and bawl but will not help. Since Ibrance stopped working and I refuse those painful shots. Dr. put me on Verzenio. Ibrance is a breeze compared to that drug. Called Dr. after one week and told him I am done. No more of anything would sooner be gone than sooo sick.After seeing him I am back on Ibrance.I guess I do not want to die. I became bedfast I was so sick.

      over 1 year ago
    • Pamelaamanda's Avatar
      Pamelaamanda

      Hi, I’m in my third cycle of Ibrance combined with faslodex and aromads. So far feeling ok, numbers going down, but the cancer keeps throwing excess fluid that accurate in the thoracic cavityand seems to need to be drained about every six weeks do I can breath more freely. Has anyone else had this issue?

      over 1 year ago
    • cowgirl51's Avatar
      cowgirl51

      I am on Ibrance 125mg and am feeling good. I've been on it for 2 years along with letrozole and my white/red blood cell count is stable. I have had no side effects except a couple times a month I get tired but I rest for a day and feel good.

      over 1 year ago
    • Nogivngup's Avatar
      Nogivngup

      Hi all. I have been taking Ibrance for 8 months now. Worst SE for me has been low WBC count and mouth sore which I relieve with bicarbonate solution rinse. Please ask your oncology nurse for tips how to relieve some of the side effects. They usually have recommendations, ideas, home remedies that may work.
      I started with Letrozole/Ibrance (but then switched to Exemestane/Ibr which is a similar drug) and a exgeva monthly shot to help my bones. Tumor markers still creeping up so I am going to try the dreaded Faslodex shots as well. Have to try everything possible to attack the Beast. In addition, I have been working on the nutrition side kind of but not full steam. Now with the help of my daughter, I will develop a diet menu without any carbs and/or sugar. We as MBC "survivors" need to know, understand and learn that cancer is fueled by sugar or sugar byproducts. It is up to us to starve cancer. I know it is hard, giving up things that you are so used to, but life is at stake here.
      To help with the WBC, I use the bone broth in my cooking to help me bring up my count and also give me a shot of energy. To maintain the RBC or hemoglobine up, I eat lots of spinach, eat lentils and liver. I know no one likes liver but it works. I wish all the best. Keep fighting, do not give up and do not give in. Hope this help someone.

      over 1 year ago
    • pianoplayer's Avatar
      pianoplayer

      be very careful of the sun and heat, worked the garden and think I had a heat stroke as passed out. so over confident as won 7 metals first place at senior games. really over worked there too but Dr, wanted a metal. gave old dr., who died, one every year for 12 years. always win for my age group alot every year.

      over 1 year ago
    • Pamatha's Avatar
      Pamatha

      Been on Ibrance and Femarafor a year. Side affects are thinning hair , anxiety especially third week of treatment, fatigue, mouth sores ( I take George’s solution to stop It). After 21 days my white count goes down have to wait till it goes backup . I take mine at dinner. Therefore I really can’t go out because of the time frame . But I am still here. There are lots of other side affects but I don’t know where I would have been without it.

      about 1 year ago
    • bebebeth's Avatar
      bebebeth

      My mother has had her breast cancer metastasized into both of her lungs. She found all this out a little more than a year ago. She was on the Ibrance/Letrizole regimen for almost 9 cycles when she had to stop it because it made her too incredibly tired and weak. After 3 months, she was started on the same regimen again. She's in her 3rd round this cycle and is already almost as weak and tired as when she stopped the last round. Other than the thinning hair, she's completely lost her appetite and "nothing tastes good." She's not very old - only 72 - so it's horrible to see her this way since she's always been active. I live in North Dakota and she and my dad are in Louisiana, but I've spent almost all of the last year helping my parents. But this means leaving my husband and 17 year old son behind. It's been horrible for me not having a support system. As new drugs like Verzenio come out, I wonder about the side effects, as well. I know the day will come when she won't be able to take the Ibrance/Letrizole combination, and already have other family members telling me that I need to "check into that new medicine." It's frustrating. Like attypatty, I'm really wondering if this Verzenio really is better. Any "real" information on the effects would be incredibly helpful. There's no way to know if my mom will have the same side effects as someone else taking the Verzenio, but it would be nice to at least have some idea of what to expect. Since my husband is a doctor, everyone expects that I know all about every drug out there, and it's not true. I'm just like everybody else - having questions and needing support! (And my husband isn't an oncologist, so don't ask US any questions. LOL) Anyway, info on side effects or support groups for caregivers would be helpful!! By the grace of God, my mom will be with us for many years to come, though I fear that won't be the case. It's hard to see your loved ones going through such a terrible time.

      about 1 year ago
    • fluteplayer's Avatar
      fluteplayer

      Ibrance is a breeze compared to verzenio with its side affects.now I had to get my side of my lung drained because I won't take those painful shots. Is there any way they can be not so painfull.

      about 1 year ago
    • bebebeth's Avatar
      bebebeth

      Fluteplayer, what shots are you (and many others) referring to?

      about 1 year ago
    • Nogivngup's Avatar
      Nogivngup

      Hi there combatants. I imagine the painful shots you refer to is Faslodex, given once a month on the glut region. I have had three sets already. My way is to take a 600 mg acetaminophen about an hour before the shot is given. Then I tell the nurse I have all the time in the world for that treatment, soooo, she needs to go slowly. The secret to having less pain while they are giving the shot is for you to relax and for the nurse to go very slowly, it is a heavy liquid so nurse have to go through a hand/thumb workout as well.
      Well, the beast is not letting up, I have another spot, so today I will see a radiology Oncology to set up a treatment to zap the tumor on my tail"". I hope this works, I have been in constant pain for awhile. Yes, Ibrance apparently is not working for me either. will see onc next week and find out what is the next drug. Please ladies/gents keep the faith, be positive even in pain. Dont give in
      I know it is easier said than done. but keep trying My best and blessing to all of you.

      about 1 year ago
    • fluteplayer's Avatar
      fluteplayer

      Someone told me that keeping cold packs on the area helps .Also numbing medication applied . Also one nurse,Told me to take the weight off the side,that getting it. I have no XXX so it feels like I am getting it into the bone. Use to take them till I can't afford the copays,now if it keeps the fluid away guess I will have to pay if I want to live.Applied for help but upmc does not help with copays even if they are more than you get a month

      about 1 year ago
    • Para's Avatar
      Para

      Hello I have been on Ibrance and Faslodex since September 2018. My cancer has matetasised to my 4th and 5th rib lining and it is producing fluid into my lung lining and have to get it drawn out at first every two weeks but now every month. When I get my Faslodex injection the nurse spray a cold spray on the area and it really does not hurt me. Try not to tense your leg when she gives you the injection. My Ibrance side effects have been tolerable, just dry mouth, constipation and hair thinning. I use bioteen dry mouth rise and also the gel and it helps. For constipation, I use miralax and stool softener and for thinning of my hair I used hair skin and nail supplements. If the nurse giving you the shop is not well trading to give them ask for another nurse. I had a nurse give me a shot on a nerve and I was in pain for a month. I told me doctor and she got another nurse to give me my shots and she is excellent. My fluid has gone down from 1400 cc to 1000 cc and my TM are coming down too. Hope this help someone out there. Isaiah 41:10;13

      9 months ago
    • Para's Avatar
      Para

      If you cannot afford the copay contact the drug manufacturer for copay assistance and they will help you with it. That is what I always do for these expensive Drugs.

      9 months ago
    • pianoplayer's Avatar
      pianoplayer

      Bebebeth Faslodex is the painful shots that goes with Ibrance. what a differance a hospital makes giving them. First 8 was a upmc hospital in Natrona Heights until I returned to my local hospital in Kittanning . Those girls know how to give the shots. I think upmc enjoyed hitting the bone every time or the nerve but I dreaded them so until I found nurses who are caring.They also dont charge as much copay.They help so much more than upmc with everything.

      9 months ago

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