Good morning! Just got out of the shower and put a comb through my hair. I've lost about 20% of my hair in the last 2 months of what I had grown back after my Dose Dense Chemo. I am currently on my 15th cycle of Ibrance and 9 months NED Diag in Feb 2017, breast-4, lymph nodes, liver-6; spine-2. I am thankful to be NED.
Here is my question how long should I stay on Ibrance? Has any one been NED and took a sabbatical and gone back to Ibrance?
My Mayo doc has started chatting with me and he wants be off Ibrance by at least by cycle 24. He is concerned about the risk of developing leukemia. At first I had great push back....but I am starting to think a break would be good. The Ibrance side affects and risks are pretty high, I have extreme fatigue, inflammation, neuropathy, and weight gain. If I stop and WHEN it comes back, maybe the new tumor infiltrating lymphocytes (TIL) will be developed?
I'm NED and should be all happy, but I'm not. I'm an emotional mess! I just want my quality of life back...this new normal sucks! I feel so guilty my two MBC friends, I made this past year, are fighting new tumors and different tumors and I'm NED and being a baby.
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Lisa-n-AZ
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How long a break? If I were NED I might consider a bit of a break. I didn't know about the risk of leukemia, yikes. If it isn't one thing it's another. Talk nicely to yourself, you are not being a baby. Everyone has their own story and your doubts and fears are as valid as anyone else's. You'll be monitored and I'm assuming you can always go back on it.
Leukemia is a real issue when your bone marrow is suppressed to the point those baby white cells become unable to produce new white cells for immunity. You do not want to go there, if possible. Take a break, eat green, avoid sugar, learn to breathe correctly and try tapping for various issues you face. It can't hurt.
Congratulations on the great results! I wondered when I would start to see the effects. I have a scalp met and Mets to bones. I kind of gage my response based on this pimple sized scab on scalp. It’s still there...
Interesting idea w the break. Honestly, I thought I read people here with 4 or 9 years on a med. But Ibrance is pretty new so I don’t know the long time effects.
My hair, I can’t tell if it’s thinning yet. Sometimes I think it’s receding in corners of forehead. But I’m 47, stage 2 dx at 44, stage 4 at 46. I think it’s the “putting me in menopause “ that has changed some texture. But I juice daily since February and the length it is growing is crazy.
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