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75 Ibrance

JustmeMary profile image
33 Replies

Hello Everyone - I’m curious to know if anyone was taken off Ibrance because of low blood counts. I was recently reduced to 75 mg but still had to hold off a week because of low counts. My oncologist said he’s going to let me finish one more cycle on 75 and if I’m low again, he might change me to something else but he didn’t specify what that would be. Has this happened to you and if so, what was your treatment after Ibrance? I appreciate any feedback and hope you’re all enjoying the holiday.

😊 peace, Mary

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JustmeMary
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33 Replies
JustmeMary profile image
JustmeMary

Thanks for responding Sandra :). I’ve had to hold off an extra week pretty consistently and that’s why he dropped me to 75 mg. I got the impression he doesn’t think it’s good to keep delaying an extra week but I’ll definitely talk to him more about changing the schedule before changing my treatment plan all together. I don’t know what comes next if I can’t tolerate the Ibrance. He mentioned an injection but didn’t elaborate on that.

TE53_67 profile image
TE53_67 in reply toJustmeMary

I agree I would push him. I’m under Guys in London and they say lots of ladies have neut problems and change regimes and not the treatment. I would stand firm. Like you every week off i had to extend by a week due to low neuts. Now they give me 3 months supply and no test in between due to the consistency of my 3 months bloods.

Verbena1 profile image
Verbena1

Hi, I was just taken off my first round of ibrance 125 mg due to the low WBC also. It’s been 2 weeks and they’re finally back to normal and he’ll try 75mg next but we haven’t started yet. I’ll check back in once I try that - best of luck with what comes next for you~

hdhonda profile image
hdhonda

This is happening to me too. My biggest considerations are trial for falsodex pills and alternative dosing of Ibrance. Of course, I haven't discussed with my oncologist. My neutrophils stay so low and it is affecting my quality of life. If you find something good to bring them up, please let me know. Blessings Hannah

Totheriver profile image
Totheriver

Hi MaryI am constantly struggling with my neutrophils. My oncologist put me on 5 days on and 2 off for 3 weeks and then a week off. It is a bit better but still often need an extra week off. I am also worried that she is going to change my treatment. Hopefully your oncologist will let you try a different schedule.

Theresa

Praising profile image
Praising

Thanks for info. What danger are we facing. I started taking b12 and folate.

Praising profile image
Praising in reply toPraising

In regard to low neutrophils and fighting an infection

So sorry to here, it is terrifying to face this monster. I have been on Ibrance since October 2018. Over the first 2 years, I had a handful of times where my numbers dropped and I had to delay the next cycle for an additional week. Last year, it was happening more often, so my dosage was dropped from 125mg to 100 mg, and that has helped. My doctor mentioned that Kisquali would be next for me, but had concerns about kindey/liver issues. I take a Vit B Complex, Vit C, D, and K, to help boost immunity. I also work out at least 2x per week with weight training (I have bone mets), and do my best to get 64 oz of water per day to help with liver/kindey damage. Prayers sent your way.

Gramat profile image
Gramat in reply toNeverOutOfTheFight

Are you in remission with 100mg?

NeverOutOfTheFight profile image
NeverOutOfTheFight in reply toGramat

I'm not sure if it is officially called remission, but I had seen a reduction in tumor size for the first 22 months, and then no sign of the disease for for the last 15 months. I had taken Ibrance for 11 months to reduce the size of the main tumor, then had a double mastectomy and a brutal round of radiation (8500 centigrade). Started back on Ibrance after I healed and have been on it ever since.

NeverOutOfTheFight profile image
NeverOutOfTheFight in reply toNeverOutOfTheFight

Still NED! Coming up on 4 year!

Heisrisen profile image
Heisrisen

Hi Mary,

I am currently taking Ibrance. My blood count is low at the end of my cycle each month. My doctor waits for one week, then I get blood work redone and the numbers are back to normal after the one week delay. Then I resume taking my new round of Ibrance. I am taking supplements, watching diet and exercise to keep my numbers in check. And most of all trying not to have any stress in my life. Hope this helps if you have any more questions let me know. Also, I just reduced from 125 mg to 100.

Debora Johnson

Praising profile image
Praising in reply toHeisrisen

I’m still below 1 on 100 mg. Will switch to 75 next cycle. I’ve been taking 2 week delay before starting. Can u bottom out and end up in the hospital ?

Maludagui profile image
Maludagui

This is my case. I agree with you Sandra

Maludagui profile image
Maludagui

I am on 35 cycles ibrance 125 mig. I take omega 3 , calcium , a lot de berries for up inmune system.

13plus profile image
13plus

Yes this was me. Dropped from high dose to mid to low dose and counts were always still low after the one week off. So my oncologist got me to take the 75 mg for 3 weeks and then have nearly 2 weeks off, every cycle. That was the schedule for iBrance. My faslodex and xgeva shots were still every 4 weeks. I got nearly THREE YEARS out of this drug. If everything else is ok please tell your doc that you would like to do this for longer. I mean maybe I was lucky but I had nearly no side effects (just some fatigue on and off, nothing terrible) and have lived a very active life all this time. I did have progression in the last few months of those 3 years (I can usually feel when something is changing in my bones) and today switched to me my drug. We have more options as MET patients now than used to be available but they are still limited, so see if you can, milk it for all it's worth is my advice. Remember all your treatment is YOUR choice. Hang in there. You've got this!

JustmeMary profile image
JustmeMary in reply to13plus

Thank you :)

Praising profile image
Praising in reply to13plus

What are you on now?

13plus profile image
13plus in reply toPraising

This week I switched to Lynparza. Which is supposed to work well for a specific mutation type - which you’ll see if you look it up. Mainly used for ovarian cancer but its application has been broadened.

Praising profile image
Praising in reply to13plus

Thanks

Ppppopp profile image
Ppppopp

Hi there, Sorry you are dealing with this.

I have been on Ibrance for almost 3 years.

My bloods were all over the place for a while.

I went off for 2 weeks etc…,

My oncologist didn’t want to give up.

My bloods were low for a whole yet, now they are totally coping

By bloods I mean neutrophils.

Xx

Ppppopp profile image
Ppppopp

Amazing!! You too!’ Thank you

seiler profile image
seiler

I'm sorry I can't add anything substantive. I was on Ibrance nearly 5 years and and had no troubles. One time my pills were lowered from 125 mg. to 75 mg., but the doctor said that was because 75 has been shown to work as well as 125.

NeverOutOfTheFight profile image
NeverOutOfTheFight in reply toseiler

Are you still going strong after 5 years? I am coming up on 3 and starting to worry a bit.

seiler profile image
seiler in reply toNeverOutOfTheFight

Aloha, Always (got that). The Ibrance finally did not work anymore and I had to change to another drug. That, too, seems to be working. We are all the same--there is nothing in the world to give us the gift of not worrying. I worry, too. It comes and goes.But I try to eliminate the risk of cancer from my mind as much as possible. Worrying does NOT HELP so why think about it any more that possible? Be busy, do what you like, do what you can, and lead as fun-filled life as possible. I'm 77 and getting older and older every day. I say "Thank God!" I've had my cancer, lymphodema, frozens shoulder, acute kidney failure from all the meds I took over the years, neuropathy, arthritis, mets to my abdominal area, and other goodies for 30 years. We can only do the best we can. When one drug (such as Ibrance) no longer is effective, know that there are other drugs to take its place. And remain "NeverOutOfThe Fight."

TE53_67 profile image
TE53_67

I am on 75 mg with 3 weeks on and 2 weeks off. This regime works for me. Ask them to look for a longer period off rather than change the treatment :)

Timtam56 profile image
Timtam56 in reply toTE53_67

Always so great to hear about this. Thanks.

Praising profile image
Praising

Sandra thank you. I love this group. Not sure how I found it!! God bless gennene

Hello Mary,

I just ended my first round of Ibrance last week and after bloodwork my onc told me to wait the two weeks before getting back on it. I’m on 100mg

Didn’t have any success with kisqali after the first round and three days back on my blood levels spiked, in just three days.

I eat relatively good. Mostly organic, chicken fish, fruits and veggies. I just find with keeping up with my water intake I don’t get hungry but do try to get my three meals in. I have a rebounder that works well for the bones and flushing out toxins, it also helps with weight loss which I don’t need with my limited diet but I enjoy it.

Take care

God bless

Timtam56 profile image
Timtam56

Hello.I am on Ibrance 100mg. Was dropped down from 125mg about 1 year into talking it because of constant low wbc. It's been over 3 years now. I am often a little low, and we wait one week. But more often than not I an ready to go into my next monthly cycle. As Sandra said, my onc also thinks it's better to keep going with one treatment for as long as possible. But I guess you have to be doing well, and I'm lucky that's it's working really well for me.

Good luck with you journey.

Photo-Bug profile image
Photo-Bug

Ibrance didn't treat me very well. My 1st round on 125mg sent me to the hospital with a 101° fever on day 12. I stayed off it for about 4 weeks. Neutrophils and blood counts were down. I was on 100mg for 1 cycle. The blood work was still not good. I was then changed to the 75mg for 4 cycles. The blood work was never good during that time. So after 2 weeks on cycle 4 it was stopped. I was then switched to Xeloda generic. Except for the hand and foot syndrome I have been doing very well with my blood work. Now after 10 months I am having trouble walking with so much foot pain. The doc has now DC'ed that. I will see her in a month to figure out what the next line of treatment will be. She is leaning towards Piqray since I have the mutation.I wish you the best during this medical adventure.

Sharon

🤗🙏

JustmeMary profile image
JustmeMary

Thanks Sharon - best of luck to you as well 🤗

Dragonfly2 profile image
Dragonfly2

Hello Justmemary! You’ve gotten so many thoughtful and helpful responses…most encouraging you go advocate for yourself and explore different approaches to your medication schedule. I have been on IBrance for a year now (12th) cycle but the last 8 have been on the lower dose 100 mg. I needed 2 weeks between cycles and thus the change to a lower dosage. At the time of the change (Christmas) I also gave up alcohol which had become a daily habit with dinner. I started to feel better and now I can tolerate the 100 mg without any problems. I do have an occasional drink when out with friends. There are no contraindications for IBrance and alcohol but with Mets to the bones, you’re bone marrow is already impacted by the cancer cells. A good healthy diet, green smoothies, supplements all work together to sport your body…and discussing your concerns with your oncologist will keep you at your best. Blessings! 😍

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