I just had the worst 3rd week ever on my Ibrance. I was exhausted, had heartburn, food didn't taste good (except candy and beer...weird, but ok!), and my emotional resilience was next to nonexistent! I got my blood test last night, and my ANC was down to .8, I've never been below 1 - so this was quite a shock to me. I'm "lucky" to be off for 2 weeks to get my ovaries removed next week, and can't wait to bounce back a little. I'm 3 days out from my last dose and still feel like a walking corpse.
Just thought I'd come here to complain a little! I feel better now!
Thanks, ladies!
Alana
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alana303
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Are you still on 125 mg of Ibrance? Can you talk to your oncologist about lowering the dose? It isn’t fun to feel that bad! Good luck with your surgery...I’m sure you will bounce back quickly from that. Elaine
I am still on 125 Ibrance. I've tolerated it quite well until this month. And my bones meets are much less active, so it's worth it? Question mark because my quality of life had suffered... I'll give it another month and see what happens.
And thanks for the good thoughts!
Hi Alana,
I'm sorry to hear you have been feeling so bad. Were you given any tips on how to increase your ANC levels so this doesn't happen again? I also wanted to wish you all the best as you prepare to have your oophorectomy next week.
By the way, I just had a peek at your profile and noticed you live in Colorado. My sister-in-law and brother-in-law live in Buena Vista. It was always such a treat visiting them, as Colorado is such a beautiful state! We used to enjoy going hiking with them. I just had a bit of trouble with altitude sickness.
Yes, I'm a Colorado girl! I was raised in the mountains and they fill my soul. If you're ever back, let me know. It would be nice to meet a fellow warrior!
As for my ANC levels, not much to do. I'm hoping next month will not be do bad! Thanks for the good thoughts on my oophorectomy. I'll keep you all posted!
It sounds like you are doing well and keeping a positive attitude.
I will keep your offer in mind if I am in Colorado again. I'm not sure when I will be visiting America again. I saw my relatives in Montana last September.
EST of luck with your op....I agree with Sophie about asking for a dose reduction ...mine was reduced after one month on the high dose...felt so much better
Hope all goes well with the oophorectomy and you soon bounce back ! I’m always a little more tired mid week 3 to early week 4 , but just pace myself more ...and seem to tolerate it after 28 cycles ! But if it does become a problem , do ask to reduce the ibrance dosage . Take care! x
I have been on ibrance 125 mg for a year now. Twice I dropped down to 100 mg because my ANC fell below 300 and returned to the the 125 when it topped 700.
I will say, I feel so much better on 100 but my oncologist is insisting I stay at 125 if I can manage it. I found it really interesting that you mentioned heartburn, because I am miserable. I have never connected it with ibrance though.
I am headed to MD Anderson in a couple of weeks for a second opinion. I will mention to the doctor the indigestion. Maybe she will have different thoughts on lowering my dosage.
Best of luck with the oophorectomy. I put mine off for several years, because I dreaded it so much. After the fatigue passed, I had no problems whatsoever. I hope it goes smoothly for you.
Andi, Mine hasn't wanted me to lower my dose either. Best wishes. Blessings Hannah
I have battled low neutrophils from day 1. Lowered to 75mg and they still bottom out. 0.3 - 0.5 is my “normal” count after the one week off. It was always three weeks off for the past two years. We have now switched to one week on and one week off. Keeps the Ibrance more level in my system and my neutrophils hover around 1.0.
Sarcie, how are your scans on this new schedule 1 on, 1 off? Curious as I too have at least 2 weeks off each month to let wbcs improve. On 100mg. Wish I could try your cycle.
I am having my first scan on the 14th that is three full months on this schedule. I will let you know the results. I feel much better taking the Ibrance this way. I was always so exhausted taking it three weeks straight.
Hi Alana, third week is always the worse for me. As for taste buds mine have completely changed since I’ve been on Ibrance. Like you sweet things are good but that’s it. I hope all goes well with your op. Lots of rest for you. Xx
The two weeks off Ibrance are the worst as my ANC levels continue to go down the first ten days off the drug. I am now on 100 mg but it is the same. They need to invent a “Neupogen” like drug for Ibrance. My emotions are all over the place and I end up cancelling many activities. I just hope it is working. I have a scan April 9. I have not had one since I finished radiation at the middle of December.
I try to keep a careful calendar and not book anything stressful or important my two weeks off Ibrance.
a low ANC doesn't usually produce symptoms - It is part of your WBC that is part of keeping you from catching infections etc - Low ANC can increase your chance of infection and illness
Hi Alana: Praying for your upcoming ovary removal surgery. Also, I was on IBrance 125 mg for 8 cycles. I had a wonderful NED scan so I asked my doctor to lower to 100mg and if my next scan shows growth or increased activity I will go back to the 125mg. He agreed. I feel so much better on the 100mg. I get my next scan in April. All the best to you! ❤️🙏❤️
I agree, that the low neutrophils shouldn't be the thing that causes the exhaustion and brain fog, etc. My onc said that after 3 weeks, your metabolism is just worn out trying to compensate for the Ibrance. BUT, that being said, there is a huge difference in how I feel when my ANC is over 1 as compared to how I feel below 1. It's kind of like a quantitative acknowledgement that for whatever reason, this cycle the Ibrance really did it's job, and that there is a reason I feel so crummy! Ibrance doesn't just target the neutrophils (as I'm sure you know), it also gets any fast reproducing cell - like your mouth, stomach, hair, and I'm sure others. I think that the neutrophil count is just a good measurement of overall what is happening everywhere else in your body!
And as a high school biology teacher, I am a very serious hand washer in the 3rd week and the week off! Don't want to catch any little bugs from my little monsters!
Ibrance was lowered to 75 mg within the first six months of starting it; taking Ibrance 4.7 years. ANC (WBC) runs at the lower end of the "in range" most of the time. twenty one days on Ibrance was too much for this body, thus the change to fourteen days on, fourteen days off, @ two years ago. the ANC is better the second week off, and i feel more "typical." for me, candy (chocolate) and beer are two 'foods' that taste good when on Ibrance.
chose not to have an oophorectomy and receive quarterly Lupron injections; chemical menOpause.
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Now I have the official report!
UPDATE - First Progress Report
Never gloating. Just so very grateful for each time this happens.
