Now I see why ANC levels matter! - SHARE Metastatic ...

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Now I see why ANC levels matter!

alana303 profile image
29 Replies

Hi All,

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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29 Replies
Red71 profile image
Red71

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

alana303 profile image
alana303 in reply toRed71

Hi 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.

Sophie

alana303 profile image
alana303 in reply to

Hi Sophie!

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!

Alana

in reply toalana303

Hi Alana,

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.

Sophie ❤

hurricaneheather profile image
hurricaneheather in reply toalana303

i lived in Boulder for years, i loved living there!

Barbteeth profile image
Barbteeth

Hi there

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

Barb xx

alana303 profile image
alana303 in reply toBarbteeth

Thanks, Barb!

I'll give it another month, but a dosage reduction may be in order. Thanks for the good thoughts! I hope you are well!

Alana

Iwasborntodothis profile image
Iwasborntodothis

week three STINKS! I put it on the work calendar so my biz partner will leave me alone and not schedule me to attend any meetings

Hang in there!

LaliChicago profile image
LaliChicago

So glad to hear you’re a bit better now. Good luck on your upcoming surgery. Please keep us posted as you can.

alana303 profile image
alana303 in reply toLaliChicago

Will do! Thanks for the well wishes!

Teddielottie profile image
Teddielottie

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

Arisgram profile image
Arisgram

Hi there!

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

hdhonda profile image
hdhonda in reply toArisgram

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.

Good luck with your surgery.

Red1246 profile image
Red1246 in reply to

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.

Thanks and all best,

Kathleen

in reply toRed1246

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.

Red1246 profile image
Red1246 in reply to

I’ll be thinking of you on the 14th and hoping for best possible results. 🙏🏻

Thanks so much for sharing. ❤️

13plus profile image
13plus in reply to

That sounds like a good approach!

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

Kdiet profile image
Kdiet

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.

Good luck and remember “this too shall pass”.

Xx

worldtravel75 profile image
worldtravel75

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

Arisgram profile image
Arisgram in reply toworldtravel75

I have read and been told that as well, but I absolutely can tell when my count is bottoming. Fatigue, depression and brain fog.

in reply toArisgram

Me too. My oncologist told me that wasn’t the cause of my fatigue but like you I can feel when things are low.

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! ❤️🙏❤️

worldtravel75 profile image
worldtravel75

Sorry. Just doesn’t make any sense -does tank your immune system though

alana303 profile image
alana303 in reply toworldtravel75

Hi worldtravel75!

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! :)

Thanks for your comment!

Alana

mariootsi profile image
mariootsi

Good luck with your surgery and here's hoping you have a quick recovery!

hurricaneheather profile image
hurricaneheather

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.

hope you bounce back more than a little!

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