Just wanted to update everyone on the difference in my side effects and quality of life since my MBC regimen was changed!!
I am no longer on exemestane (an AI). I am now on Faslodex injections. Also my Ibrance dose was lowered from 125mg down to 100mg.
The difference in my side effects is SO MUCH BETTER!! Before I had debilitating fatigue, achy joints and muscles, fingernails wouldn’t grow, hair falling out by the bushel. I was having constant anxiety just trying to cope! Had to stop working part time. It was AWFUL. My brain didn’t feel like me!
Only made the change a couple weeks ago and the difference is amazing! My body feels better, my brain feels better, and I’m back to working part time! What side effects I do have now are tolerable and manageable. I also got a short hair cut because my long hair had gotten so dry and brittle!! Nails are growing again, hair looks so much healthier. I hope this keeps working for a long long time because this I can do!
God bless you all, my fellow warriors!
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Yes idk if it was the exemestane or the Ibrance; either way this is way better. I didn’t work for three weeks the fatigue got so bad! I was able to work the last two weekends and it sure helps my mental health!
Congrats on getting your life back! I had your same haircut and loved it, just recently went to a full-blown pixie ha ha ... it's easier for me to highlight and pull through the cap as I must have my highlights! I love the mermaids! God bless you and heal us all in Jesus name, amen! So nice to read some happy news! <3 xo
Thank you so much! Oh my gosh you reminded me of a good memory as a teen, highlighting my mom’s hair with the cap!!! Hahaha! I didn’t know they still made them! God bless you too Sis!
I'm always doing something to my hair; my mama was a beautician so it was inherited! People are scared of doing their own hair but I will tell you one thing, I've never made myself cry but I have run out of beauty shops almost in tears! Have a blessed afternoon or nite nite depending on where you live as so many are in the UK; Texas here ... God bless you sis and heal us all in Jesus name, amen! <3 xo
I’ve had the opposite, ruining my own hair!! Haha! I’m a California girl, born in San Diego but live in the Bay Area over thirty years now. I work at winery! They have been so supportive of me!
You bleach your hair???! I am about to go mousy brown all over due to fear of doing foil highlights. Ibrance and Faslodex hasn’t really affected my hair except really dry....pls share more about how you have done it!!!! I don’t want to be brown hair...I have been blonde for 46 years...
don't do the foil, use the pull through the cap and I like petite frost. I am quite happy when I only do the front, then I actually get two treatments out of the box <grin>.
I’m not sure, but I feel like the exemestane was the big culprit. Absolutely awful. Listen, it’s not to say I don’t have any side effects, because I still do, but dramatically better! I can handle this. Prior I was having terrible anxiety every day. The fatigue was debilitating! Haha thanks about the photo; obviously I’m a terrible selfie taker!
Awww thank you!! I’m still getting used to the short hair but it’s so much easier and looks a whole lot healthier. My long hair was getting so dry and brittle and falling out. This is much better.
Yay!! I’m also loving my Faslodex and Ibrance 125mg treatment the last 7 months. Like you, my hair and nails thinned, hair cut short for the first time in 50+ years. Friends/family say I look younger. I started taking vitamin D3 and B complex which seem to be helping hair and nails. God bless all you sister warriors.
Yes last time I had short hair ever was as a toddler haha and my first cancer camp in 2010 when I had no hair! Nine years later the bitch came back. I’m feeling pretty spunky in my new ‘do!’
Glad you have found a new you. You look so pretty.
I chopped all mine off also and I felt so free of the longer hair maintenance😄
Unfortunately, ibrance wasn’t for me. I am one of the ones who had an allergic reaction. Been off all treatment for two weeks now. See doc tomorrow. Right now I am calm- hopefully whatever he is thinking of giving me will be ok with me.
I have been on Ibrance 125mg for FOUR years. Debilitating fatigue. I had labs drawn on Monday and my ANC has dropped to 0.7. Seeing doctor tomorrow . So providing the scans are good i may be able to lower my dose also.
Yes Sis, debilitating fatigue. Idk if it was from the exemestane or the 125 Ibrance, all I know is switching to Faslodex and 100mg Ibrance has made a huge difference in just two weeks. I was getting anxiety every day feeling so immobilized by the fatigue. I hope you’re able to switch and find better quality of life. My brain feels better too. What else are you on? That could also be contributing. Hope your appt goes well and changes can be made!
I am so frustrated as I have been complaining for months and months about vision and balance problems with my oncologist. Found out on my own that exemestane can cause these two issues, but my oncologist apparently was not aware. I talked to the pharmacist that said that these issues may not go away! I'm sorry but our doctors need to be more aware of the side-effects that they order for us.
I also wonder what kind of kick-backs they get from Big Pharma.
Yes I had those issues too on exemestane, along with so many others!! It was awful. I hope you can make some changes. I’m not thrilled about the faslodex injections but way way better than everything I was experiencing on exemestane!! Good luck to you Hon! I feel ya!
Did you regain your sense of balance? I am terrified that it won't come back. I had polio, all three viruses, spinal, lung and muscular. My bulbar (brain stem) was affected so this is very scary for me. Fluvestrant and Ibrance did not work for me. I actually am using Metformin on my own and it has gotten rid of a skin cancer on my stomach (in a week) and it appears that it may have killed a met on my liver. However, my doctors keep insisting that Metformin doesn't work. How much do they get back from Big Pharma?
Well my balance was affected by my first go round in cancer camp over 8 years ago. After phys therapy it got better. Then starting treatment again it got worse again. Since making the med switch recently, it’s way better.
Your hair looks great and I am so happy to hear changing up the meds a bit help a lot! I have an oncologist appointment tomorrow and will discuss it with him. I have only been on IBRANCE one month and my whole body is so dried up and my hair is falling out by the handfuls. Best wishes to you!
Yes I’ve read several folks say the 100mg Ibrance is just as effective as the 125. Also I switched from exemestane (daily AI) to faslodex injections instead. These changes have lead to dramatic reduction in my side effects! Even my brittle fingernails are growing back. Good luck!
Congrats! Always so encouraging to read posts like yours! My struggle has been low WBC 1.0 and ANC drops to 200 or 500. Did lower dose make any difference in yours?
Yes my WBC is now at the very bottom edge of the normal range. It’s amazing how much it has helped the extreme fatigue I was having. I hope the new combo is still working to keep my bone mets stable or even better shrink! It’s kinda weird, I feel so much better but now a part of me is questioning is it still working? Somehow when I was sicker and absolutely down for the count, I was like this MUST be working. I know, I’m goofy.
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