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Looking for Opinions – Targeted Therapy – Ibrance
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Looking for Opinions – Targeted Therapy – Ibrance

› Forums › General Melanoma Community › Looking for Opinions – Targeted Therapy – Ibrance

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    • April 28, 2021 at 2:03 am
    CindyJ
    Participant
      Hello All! It’s been a couple years since I’ve posted, but continue to read the forum. I’m looking for opinions for my mother, as so many of you are experts on melanoma and cancer in general.

      My mom started Ibrance (palbociclib) almost four years ago when her genome test showed a CCND1 amplification. She has been NED for over three years. She never had a large tumor burden. Only some lymph nodes and a possible node in her lung (which was never tested). They started her on the highest dose, 125, but after some serious side affects (severe fatigue, blood cell numbers very low) she’s been at 75 for most of the time.

      She’s now 83. The fatigue has gotten out of control, along with a huge loss of appetite, diarrhea, low blood counts (platelets hang around 50 even after a week off). I think the low red blood cell count is causing her to get very winded just walking to the bathroom.

      My question is, when is it time to get off treatment and out of a study? Her oncologist, who’s a principal of the study, has always said to keep going if it’s working. When is cancer dead? It seems she’s taking medicine for something she no longer has. I realize cancer can always return, but her oncologist has said if she quits, he’d put her back on, off label. Anyone have any thoughts. I’m both excited and terrified at the same time…

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        • April 28, 2021 at 8:04 am
        ed williams
        Participant
          Hi Cindy, best place to get information about a breast cancer drug would be from those taking it or that have taken it and how their oncologist managed the side effects. Targeted therapies in melanoma are usually given in pairs like Dab and Tram or the new Tovi combination sorry can’t remember their real names just end in Tovi and the side effects seem to be less when given together than if you got a Braf inhibitor alone. I am going to include a link to the drug Ibrance and on the right side of page it goes in depth of possible side effects and shortness of breath is listed as well as possible ways to deal with side effects. You could also look up the original clinical trials in breast cancer of Ibrance to see what happened for those who stopped and started again.  Best Wishes!!! Ed https://www.ibrance.com/
            • April 28, 2021 at 8:39 am
            CindyJ
            Participant
              Thank you so much, Ed for the reply and link!!! I have also been reading an Ibrance forum.

              My mom and I are really struggling with a decision to get off the drug. We see her oncologist on Monday. My main concern is being on the drug so long. It’s really taken a toll on her body.  I don’t read about people being on immunotherapy or chemotherapy indefinitely. And maybe because Ibrance is a targeted therapy, which usually quits working after several months, we’re in uncharted waters? Or are targeted drugs that are working just given forever even after NED, as long as they’re tolerated?

               

              She’s not had melanoma show up on a PET in over three years. Just wondering at what point it’s decided your treatment worked and you’ve had enough?

              • April 28, 2021 at 12:20 pm
              ed williams
              Participant
                I am probably a little bias as I spayed on checkmate o67 trial for 5 years and 9 months getting Nivo every two weeks until colitis kicked me off the trial. With targeted therapy when bad side effects arise many just stop and take a short break and side effects usual go away. I have no background with the drug your mom is on and every drug has such unique side effect profiles that getting information from those that have taken the breast cancer drug would probably be the best source and of coarse her oncologist. Best Wishes!!!Ed
                • April 29, 2021 at 6:09 am
                CindyJ
                Participant
                  Thank you Ed for taking the time to reply, again! I have a better understanding now! We’ll discuss her options with her oncologist, and if we decide it’s time to stop, we’ll pray that if she ever needs to get back on, the drug will work again.

                  I’m wondering how GeoTony is doing. He started Ibrance I believe in 2019. I’ve not seen any posts since.

                  Thanks again!

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