Ibrance side effects

[kkrouse]

I’m having a lot of side effects with Ibrance. My onc says if I voluntarily stop the drug, and the cancer progresses, I cannot go back to the Ibrance. Is this true?

[Barbteeth]

Hi there

Are you on the high dose of 125mg?..if so maybe the dose could be reduced..lots of ladies on here take the 75mg dose which apparently is just as effective with less side effects

Apart from that I can’t advise you..if it makes your quality of life dreadful then there are other options

All the best to you

Barb xx

[kkrouse in reply to Barbteeth]

I asked about reducing the dose. He feels side effects won’t change. I’m also on Faslodex. After 6 years on Letrozole, I’m content with just Faslodex. But I developed 3 new spots when the Letrozole stopped working, so he worries that I’ll have a bunch of new Mets if I stop the Ibrance.

[Barbteeth in reply to kkrouse]

Oh dear what a difficult decision..have you been taking Ibrance for very long?.. if not then your side effects may improve as your body gets used to it

It does seem for many ladies ( obviously not all) to work extremely well

Good luck with whatever you decide

Barb xx

[kkrouse in reply to Barbteeth]

12 months and some is better. I manage the fatigue better and use medical marijuana for sleep. But the neuropathy is worse, mouth sores worse, hair loss worse. I’m going in this week, and will demand lower dose.

[Hidden in reply to kkrouse]

Nonsense. My oncologist makes it very clear that if I have symptoms the next step is to lower the dosage. I’d push back on him. Try reducing to 100 which is next logical step first. If you still have symptoms at least you’ll know that you tried

[Halfpint2 in reply to Hidden]

I totally agree with Martha... lower the dosage and see what happens before you bail on it. I was on 125mg for nearly a year until it started crashing my counts so it was lowered to 100mg and I’ve done great on it. Sorry your oncologist is confusing you.

[Topaz_77 in reply to kkrouse]

Yeah, I agree with the others. I started at 125 mg but my blood counts were sluggish in coming back up during the one week break, which had to be extended into the next week as a result. My oncologist reduced my dose to 100 mg on the recommendation of the pharmacist, saying it was just as effective.

[Bailey3266]

Did you get second opinion prior to starting Ibrance? Here is what advice I’ve seen on here on another thread:

Is to go to a specialist oncologist (ie. Breast) @ a “Comprehensive Cancer Center” found on website of National Cancer Institute (in Boston I used DFCC-Dana Farber. Good luck & update how your feeling & if your dose gets lowered; that is the general consensus from those on Ibrance. Not sure why we are even given the 125 if a lot do just as well on 75 or 100? I guess in hopes of maximum benefit. I did here you cannot stop & start Ibrance—but I have heard of longer break vs 1 week @ Times. Also the side effects that bothered me the most did wax and wane for 1st six months but with daily walks and but healthier lifestyle in general-nothing drastic/too heavy—I’m on cycle 17 and no side effects to speak of—but @ its worst for me I felt bad-worse for entire cycle and best after 1 week break. I’m on letraziole (Femara) & doc thought that may be what was actually causing side effects that really put me down. I started on Zolort an SSRI (I think) antidepressant (which also helps with anxiety) and that may also have helped (@ least with regards to going out & walking etc). Short story I stuck it out as my scans and bloodwork all showed dramatically better than when I started Ibrance. I hope immunotherapy becomes available soon. My best to you

[kkrouse in reply to Bailey3266]

Letrozole worked for 6 years. As it stopped working I started getting extreme pain in my hands and feet. It stopped within 3 days of no Letrozole.

I go to Roswell Park in Buffalo. I first had BC in 1991. Mastectomy and full chemo. I was cured. It came back 20 years later, in my breast and my right adrenal. Letrozole worked well, until it didn’t. I developed 3 new spots; shoulder, and two lymph nodes. Now it’s 12 months on 125 Ibrance and 250 Faslodex. My last scan showed zero cancer. I’m going to demand a lower dose or drop it.

Thanks for your feedback.

[Sister3nkc in reply to kkrouse]

I've been on Ibrance/Letrozole for amost 4 years. Everyone is different and so is our ability to tolerate the treatment. I would think long and hard about stopping the treatment if it is working. In 2001 I was put on Arimidex after surgery, chemo and radiation therapy for Stage 1 breast cancer. I was having trouble with the side effects, mostly some pretty bad muscle/bone/joint pain. I worked as a RN in the recovery room, on a dead run and on my feet 12 hrs per day. After a lengthy conversation with my oncologist I decided to stop the Arimidex therapy. 15 years later I have mets to my left lung. After meeting with several top breast oncologists I was informed that the Arimidex was probably more important than the chemo, radiation or surgery! Not blaming anyone, in 15 years our knowledge of treatment has greatly advanced and we now know how crucially important hormone targeted therapy is to estrogen receptive breast cancer. I understand how the side effects can affect our quality of life however, I do wonder if I would have had the recurrence 15 years later if I had finished the Arimidex therapy. If your scans are showing NED the Ibrance is working!!! I wonder if you stop Ibrance and start with something else can you go back to Ibrance if other therapies fail? Make sure you know all your options before making a decision.

Good luck and blessings to you.

Namaste.

[JoyBe in reply to Bailey3266]

I took your advice about looking up "breast specialist " on the National Cancer Institute website.

I'm so glad I did!

My oncologist was causing me undue stress with regards to not allowing me to question his suggestion for hip surgery just because a radiologist said my hip"could" be at risk for a fracture.

My cancer lesions in my bones have been continually diminishing, I have NO pain and never had pain. And my tumor marker is now at CA 20 from 97 back when I started Ibrance and Letrozole.

My oncologist never consulted a oncologist orthopedic , why? because there is no oncologist orthopedic in our state!

So after he cut me off in a phone call instructing me to not "over talk" that he was NOT going to change his mind on recommending I have surgery the was it for me!

I saw him on Nov. 28th and told him I would like to be referred to a Breast Cancer Specialist. He was shocked and was condescending evident in asking me if I wanted a surgeon,radiologist or medical Breast Cancer oncologist.

He abruptly left the room without reviewing my lab work and said "have a nice holiday".

The staff spoke with the one female Oncology Breast Cancer Specialist that comes in one day a week to my location who happened to be listed on the National Cancer Institute website linked to locate doctor. She said she would be glad to take me on as a new patient!

On a side note: The lab work clearly showed the stress I endured from knowing I would be confronting my oncologist evident in my glucose which shot up from the stress and my BP did as well. My glucose went from 97 to 123 and my BP went from 126/72 to 138/76.

I am so happy to be looking forward to having a female Oncologist who is a noted Breast Cancer Specialist.

Now I will be able to find out what type of MBC I have and I will be able to ask all the questions I want about my MBC without being told to stop talking.

It will be interesting to see my glucose and BP level on the visit to my new oncologist.

Moral of the story, if it doesn't feel right, question it and keep questioning until you have the educated and experienced answers you deserve and that feel right for your specific individualized MBC diagnosis.

We are all unique and special and deserve the very best treatment for our MBC!

First I went to cancer.gov and some how was routed to locate doctor on : cancer.net

[kkrouse in reply to JoyBe]

I’m so glad you’re getting the help you need🤗

[Sister3nkc in reply to JoyBe]

After 1 year with a top breast oncologist who was as cold as a fish I also changed to a different doctor.

You should NEVER be talked down to or discouraged from asking questions. It sounds like the doctor you described was not very knowledgeable and got stressed out if you asked questions. They should have been referring you to a breast oncologist, you never should have to ask for that.

I'm glad you made that change!

Good luck and blessings to you!

[Wintervt]

I would ask your oncologist to lower your dose, as the side effects may be more tolerable.

I am on my 5th cycle of Ibrance @75mg. I have some side effects but they are minimal.

[kkrouse in reply to Wintervt]

Thank you

[kkrouse in reply to kkrouse]

I got my dose down to 100. I’ll start in a week. Fingers crossed.

[Sister3nkc in reply to kkrouse]

I think lowering the initial dose is a very common practice. The goal is to keep you on highest dose tolerated for as long as possible. I hope the lowered dose helps you tolerate the Ibrance better. I've been on it almost 4 years and did not have to lower my dose although i do suffer many side effects. Not having to work really helps.me get the rest I need.

[Teddielottie in reply to Sister3nkc]

Wow ! 4 years on ibrance 125mg / letrozole! And I hope you get many more! Has your onc. said how long they will keep you on this combination and whether you will need to take a break from it ?

I’m one year on the same , and like you , tolerating ! Stories like this are a great inspiration ! Thank you x

[Sister3nkc in reply to Teddielottie]

Hi Teddielottie

I will stay on this medication combo as long as it works! No break necessary since I am tolerating. When first diagnosed my husband and I went to MD Anderson in Houston, TX. I met a female doctor there who had been very involved in the clinical trials of Ibrance. She told me some of her patients had been on the Ibrance/Letrozole combination therapy for over 4 years with no progression. Based on the pathology of my tumor type she said I was the perfect candidate for this therapy. She really gave me hope. Honestly, I'm doing better than I expected, so I cherish every day. Fatigue is debilitating, but I stay home and try to keep busy doing something productive every day if possible!

Good luck and blessings to you!

Terri

[CharaMasiakou]

Hello sweetie

I also start with IBRANCE 125mg and I had from the first month many of side effects, especially stomatitis, vomiting and sterility.

I decided with my oncologist and take now lower dose of 100mg and I don't have them, the only think is that I have very low WBCs, but I thing that these is the common symptom.

I also take Letrozole. So I propose you to take the lower dose. It works for me but of course you should counseling your oncologist. 😙😉😉😉😊😊

[kkrouse in reply to CharaMasiakou]

Thanks. I’m seeing him Thursday. We will talk about lower dosing.

[Teddielottie]

What side effects are you having ? I am on 125mg ibrance (12 months) and have had side effects but were tolerable . If not tolerable , I would try the 100mg first before stopping ibrance . Many ladies on here do well on 100mg. Or if your onc won’t accommodate this get a second opinion .Good luck x

[kkrouse in reply to Teddielottie]

The peripheral neuropathy is the worst. My little fingers are numb. My hands tingle constantly, unless they are numb. It’s hard for me to sew. I also get pain in my feet. Of course there’s also hair loss, mouth sores, low blood counts, and fatigue. And my mouth tastes like copper, many foods I can’t taste, others taste bad. I’m almost 71. I don’t have a ton of good years ahead, not counting the cancer. I want to be capable for more years.

[PJBinMI]

I think your onc did an inadequate job of explaining this to you. Ibrance is not given alone and only with an AI (like letrozole) or Faslodex. Side effects vary alot person to person. You could try a holiday from Ibrance until the side effects go away and then go on a lower dose of it. Some oncs tend to start with lower doses and then increase the dose as long as difficult side effects don't develop. Others start with the high doses with the idea of lowering the dose if difficult side effects develop. When I was first on Ibrance, I got cold sores just inside my nose the first two cycles. (Abreva cream helped once the sores developed, it's OTC) Never had those again. I developed a nasty lung issue, Interstitial Lung Disease, while on Ibrance and two years later it is still with me. It's the worst side effect I've ever had in over 14 years of treatment for MBC. So I'm not a big fan of Ibrance but I do know it works for some. The fact that you got 6 years from Letrozole is very hopeful! I got almost five from it and that was longer than most of the other women with E+ mbc that I've met. I agree with the suggestion of seeing a bc specialist onc, preferably at one of the Comprehensive Cancer Centers, listed on the website of the National Cancer Institute. When I saw a specialist like that, when she did the breast exam it felt differently than when any other doctor or nurse had done it, as though she had radar in her fingertips. She was both gentle and firm if that makes any sense, and just really different. I'll go back there anytime a difficult decision has to be made. I'm currently on Aromasin, the steroidal AI, and have been since early this year. I'm very tired a good bit of the time, but who knows how much is from cancer, cancer treatment, age, or another health issue. But I still enjoy life, walk the dogs daily, do the laundry and grocery shopping and cook dinner about 4 times a week.

[kkrouse in reply to PJBinMI]

Thanks. I do go to Roswell Park in Buffalo. My doc doesn’t believe a lower dose would alleviate the side effects. He was away last month. The doc I saw in his place had me take a two week break. Most side effects lessened, a couple went away. I go in this week for the Faslodex and I will have a talk with them.

[PJBinMI in reply to kkrouse]

I think a talk with them is a good idea. Maybe he'll revise his opinion about the side effects. And you can say it's worth trying. I don't remember reading exactly what side effects were bothering you. You might get suggestions about things to try if you tell us what they were. One thing to do is to be sure to keep yourself well hydrated. Drink plenty of water every day. If you have lung/breathing side effects, those can lead to serious problems and may be worth stopping Ibrance over. Cold sores and lower white cell counts, not so much, unless the white counts are causing problems often.

[kkrouse in reply to PJBinMI]

I’ve had a couple severe sores, requiring a break from Ibrance. Peripheral neuropathy is the worst. Shortness of breath. Fatigue. I try to keep up with the water, but my mouth tastes like metal, so it’s hard to want to eat or drink. Food either has no taste or tastes bad, except for sweets and Thai food. At least Thai food is healthy.

[kkrouse in reply to PJBinMI]

He agreed to lower the dose. Also, the palliative care team gave me zinc sulfate to help with taste, and Cymbalta for the neuropathy.

[JulSoul]

I take 75 mg every other day due to low counts. Maybe that would help you.

[Gram10]

My onc lowered the Ibrance to 100 mg this cycle and there has been no improvement in my devastating fatigue. Right now I feel I have no quality of life. My husband has taken over all my chores including loading the dishwasher and feeding the dogs. I cant climb more than a couple of stairs without sitting down. I've always been an active person but now I'm spending my days sitting in a chair. I see my onc in a week and I will ask to be taken off Ibrance.

Patricia

[kkrouse in reply to Gram10]

Yes, stairs get me too. I’m so short of breath. My sewing room is upstairs, and I spend most of my time on the couch.

[Gram10 in reply to kkrouse]

Yes, the stairs are the worst. I find myself gasping and panting for breath.

[Hidden in reply to Gram10]

I too have debilitating fatigue. My doctor dropped me from 125 to 100 but that was due to my neutriphils taking 3 weeks to get back to an acceptable level during the supposed one week off. My next step would be 75. I can’t function and like you can’t do anything. It makes me feel useless.

[kkrouse in reply to Hidden]

Yes, useless. I finally have time to make quilts most days, but no energy, and my brain is slow. It’s better on the end of my off week.

[Gram10 in reply to Hidden]

Yes. Usless.A great description. It feels hopeless.

[Gram10 in reply to Hidden]

I feel totally useless, too. This cancer gas destroyed what little life i have left.

[Hidden in reply to Gram10]

I’m trying hard to find the energy. I just had hip replacement surgery due to the Mets in my hip. Once I have recovered I’m hoping that I magically get more energy.

[kkrouse in reply to Hidden]

I hope your recovery goes well. It’s always something, right?

[Sister3nkc in reply to Hidden]

My fatigue is also debilitating. Most of the side effects improved with time, fatigue grows worse. My cell counts never drop low enough to change the dose or be treated. If I had to work I couldn't do it. My husband is wonderful, still works full time and does much around the house that I can't keep up with. We have dogs, and they have added much joy and companionship to my life. I also sew. Love to make quilts. Sometimes it is too much to sit at the sewing machine. So I have a few projects that I can do while seated in my comfy recliner. I have to do something productive every day. My house isn't as clean as it used to be but oh well.

[mariootsi]

I agree with all the ladies who responded to you. I was on 125mg. Of Ibrance to start. My onc lowered it because of low platelet issues to 100mg. I would ask to have dose lowered. And if 100mg causes problem s ask to lower to 75mg. Apparently just as effective. I pray all this will work for you and you have continued success on Ibrance! Love, Marianne If your onc won't try a lower dose I would get another opinion. Take care

[kkrouse in reply to mariootsi]

Thanks, I will.

[kkrouse in reply to kkrouse]

He agreed to 100. We’ll see how this goes.

[hdhonda]

Unfortunately, most, if not all cancer drugs have unpleasant side effects. We all react differently to each drug. I started with 100mg. And have gone to 125mg. and have had problems with counts but will continue as long as it is working. The low counts make me tired. I try to pace myself. Blessings Hannah

[kkrouse]

I realize all drugs have side effects. But with all cancer activity stopped at this time, maybe a lower dose will still work, with the Faslodex. Quality of life is important to me. At almost 71, I don’t want to give up my sewing and quilting.

[Gram10 in reply to kkrouse]

I'm 75 and don't want to give up all that I have loved to do. My grandaughter s keep asking me to knit more clothes for their American Girl dolls. Sadly my hands dont work anymore. Joints and wrists hurt

[kkrouse in reply to Gram10]

I hear you! My hands and wrists sometimes hurt, always tingling or numb in parts. And I have trouble following patterns. I’m better on my week off, so I want to lower the dose or stop the drug.

[Gram10 in reply to kkrouse]

And I miss playing my violin and piano. I feel so robbed. .

[kkrouse in reply to Gram10]

I know how you feel.

[Sister3nkc in reply to Gram10]

God bless you my dear. Stay strong, keep the faith. I'm ❤

[ArizonaGramma]

Go to a lower dose? I am on 125 mg. and to solve my issues with Ibrance we first tried 2 weeks on and one week off it, but Letrozol was still every day. By the time my next cycle was to start I was doing much better so there was no need to drop to 100 mg. pills. Hope this helps. I was near 1,000 on CA bloodwork when I started Ibrance, now at 130, so for me this is working and I just started my 6th cycle.

[kkrouse in reply to ArizonaGramma]

G.ood for you!💕 I want lower dose after 12 months at 125 and feeling bad almost all the time.

[Southside25]

I've read that there is some evidence that any dose of Ibrance is effective; in other words, if it works, it works regardless of dosage. I saw this on another support site. The poster said her onc. said that Pfizer will be announcing this in the future. This is from that site:

"just had an appointment with my oncologist yesterday-- she told me that a Pfizer

representative told her recently that post-marketing analysis of both the earlier clinical trials and actual

patient use (data to be released in the future) is showing that ANY dose is equally e􀁷ective-- that if it

works, it works, regardless of the dose, and there doesn't seem to be any correlation with degree or

duration of response based on dose.There will be more sub-group analyses reported in the next year or so

trying to determine if a particular sub-group of patients (lobular vs ductal, ER+only vs both ER and PR+,

etc...) responds better than others....

So I wouldn't be concerned about lowering the dose- I am almost at the end of cycle 32--the last 28 of

them at 75 mg. So it hasn't a􀁷ected the e􀁷ectiveness for me...and I will continue at this dose at least until

my next scans in January."

Lowering the dose should reduce SE. It's certainly worth a try.

[kkrouse in reply to Southside25]

Thanks! I’m on 100 now and can taste food again.