Stopping ibrance.

[marianne88]

Hi. Did anyone just say the heck with it and stop ibrance a couple of days early for the month. This is just getting old and I just want to get through the ugly first couple of the days off since I have a family wedding and want to feel good. Thanks. Marianne

[Jorgit]

That is a very interesting question. My mother never stopped her ibrance eventhough having suffered recently from a gastroenteritis after a visit to a restaurant (the whole family suffered the same). The thing is, after a few days during that cycle, she never felt well and ended up developing a complicated mastitis that kept her at hospital for 3 weeks, as I assume her inmune system did not properly catch up after the gastroenteritis, so finally she ended up having to stop ibrance for a total of five weeks. She has tumors in her lungs, so I have always thought that if she developed a cold, she could do with stopping the ibrance for tow or three days, to help to prevent the infection spreading to the lower respiratory tract. If anybody could share their experience in similar cases or as the one above mentioned by Marianne88, it would be much appreciated. Thank you very much.

[8576]

I never have any meds for that reason but I agree with the concept of feeling good for the wedding. A couple of days shouldn't make a difference. I would do that.

Cheers, June S.

[Southside25]

Are you on the standard 23/7 schedule? My onc let me go on a 5/2 schedule which was much easier to handle and kept my neutrophils high enough. Talk to your doctor to see if he/she would let you try it. I think it's becoming more common. Some people do a 1 week on/1 week off schedule. There are choices.

[Eyebelieve]

I love my oncologist and my nurse as I immediatley come to them with these questions. Living your best life is so important. A wedding is a very special event and I totally understand why you want to feel well and I am sure your oncologist would agree. Bring it up to him/her. I have been told I could always take a "treatment holiday" if I needed one for a special reason and feeling well for a wedding fits into that category.

call or patient portal your medical team, I am sure they will work with you.

Enjoy today and the wedding!!!

[Dragonfly2]

Hello…I just recently posted about changing my schedule because the 21/7 day schedule left me extremely fatigued, depressed and unable to restart the meds after 7 days because of low neutrophils. While keeping to a regular schedule is important for the meds to work, there is little advantage if the meds begin to destroy your body. Definitely have a conversation with your Onc, but don’t suffer through a family event because of the schedule. Tweaking the schedule may actually work better for yiu after all.🥰

[Mimiholl]

Hi , I had to stop Ibrance for 12 weeks because of knee replacement. Going off Ibrance was what kept me from getting knee replacement for years, I was more worried about cancer recurring. Oncologist assured me that quality of life was more important. I still took letrozole each day. Just went back on 3 weeks ago, and was very worried about lab results, which fortunately were virtually the same as always. I have my 6 month full body bone scan, and full body ct scans in September and praying those results are good. It hasn’t been as easy going back on Ibrance after such an extended period, but also not feeling great recuperating, so it is impacting everything. I have gone off the Ibrance for 2 weeks when I needed blood transfusion and iron infusion., but never have gone off letrozole.

Enjoy the wedding , I love Fall weddings, maybe it will be cooler.

🙏Marianne H

[Mimiholl in reply to Mimiholl]

Me again, yes the reason for me to go off the Ibrance was my immune system. Taking Ibrance lowers immunity, and then more likely to get an infection.Feel good !

Marianne H

[Lilykristymichael in reply to Mimiholl]

Thank you for posting about your knee replacement. I am scheduled for one next week and have been very anxious. I am off Ibrance two weeks before and two weeks after, or longer if I am not healing well. I find it interesting that you were off for 12 weeks. I am wondering if I should delay starting back on Ibrance longer than two weeks. My onc is very responsive and I need to ask her about this. I have been on Ibrance since July 2019. I am on 75 mg three weeks on, one week off. I’ve had no progression since starting. But a big surgery like knee replacement is very scary. Your post has made me less anxious. Thank you.

[Mimiholl in reply to Lilykristymichael]

I have been on Ibrance 125 since 2017 . I recently reduced to Ibrance 100 , letrozole and have always been 3 weeks on and 1 week off. It was my orthopedic surgeon who requested I go off the Ibrance for that period of time which was 6 weeks off before and 6 weeks after . Two of those weeks would have been my weeks off anyway. I never stopped taking letrozole daily. It’s the immune system he was worried about. I have luckily been NED since my 2017. I just had my lMonthly labs and everything was the same.

It has been 9 weeks since my surgery and I am slow walking but I can now do 1/4 mile. ( pre pandemic I walked 1 1/2 miles a day., so really had no exercise for 2 years) My knee had been really bad but they would not do surgery during pandemic. I was in a knee brace and wheel chair for 6 weeks before so my leg muscle lost strength. It’s slow going but they said expect 6 months to a year. Im still doing pt 2 x weeks and of course at home.

Good luck! 🙏 Marianne H

[Lilykristymichael in reply to Mimiholl]

Thank you so much for this information. I do trust you are continuing your knee recovery and can now walk better. Your post has eased my mind a great deal. Madlyn

[kearnan]

Well I cannot vouch for that specifically, but the way I feel, I would want to ensure I was able to enjoy the day. But that is just my personal way of thinking.

[Lynn-in-California]

No. I have never done that. I have been extremely fortunate to remain stable on 125 mg of Ibrance plus 2.5 mg of Letrozole for over seven years.

[bracelets1 in reply to Lynn-in-California]

Sure is nice to hear that you've been doing well on that combo for 7 years!!! Love hearing such positive results - May you have many many more!

🤗

[Ski2sea in reply to Lynn-in-California]

Thank you for posting this Lynn. I am on the same combination (along with shots of zolodex.)

[Ski2sea]

Hi there, Yes I do. When I travel or have an event like you. I am on the 21/7 schedule so I can adjust to extend my off days to coincide with it. I was very open with my onc. and she understands and is ok with it. I’ve been on 125mg for three years. Have a wonderful time at the wedding!!

[mizcaliflower]

Hi Marianne, this is my Ibrance story...

Good or bad, this is what works for me.

My dr also prescribed Ibrance for me. I had been getting along amazingly well. Feeling good, Pretty upbeat for stage IV MBC hur 2. nu. Whatever that meant...

On Ibrance, my hair started falling out very fast. One day at my friends house for a brunch, I got a very nauseous. I took a Zofran and left to go home. I had a 40 minute drive. I had to stop three times on the side of the road to throw up. It just wouldn't stop. I thought I must've eaten something that disagreed with me. I was sick for two weeks. Taking Zofran two and three times every day. I started feeling sad, and depressed, constantly sick. Weepy and not knowing what had changed.

My dr called to say my liver enzymes were extremely elevated and to stop the Ibrance. I was so sick and sad and depressed at this point, without knowing why the sudden change in my overall outlook and feelings. As soon as she said that I knew that was what was wrong. I was instantly relieved and immediately began to feel better. the nausea went away, as did the sadness and depression. (I had never been depressed in my entire life, before then)

Within two days I was back to my usual self.

Now the drs want me to take it again. I said NO! They are kind of badgering me to at least try it. I still say NO!

Why would I take a medication that makes me feel like killing myself, when I feel like a whole human with out it??? I refuse to be sick from a medication. It's enough to have cancer, but I was not sick, sad or depressed before. So no, I will not "try it again"... not even at half dose.

My tumor markers are normal, I still take the Phesgo shot, and Xgeva for bones, but nothing else.

I'm taking some holistic properties now and feeling good again. Living my life.

btw... just to be clear; I would not actually consider taking my own life, but I did pray fervently for the LORD to take me. I had never experienced feelings like I was feeling at that time. Just. So. SICK. No point to living. I had never felt so horrible in my life. I was never a sick person. I didn't know how to be sick. I had never even had the flu. Abject Misery was the dominant factor of my being during those weeks.

In the beginning I had eight triple chemo infusions via spinal tap. Not once did those make me sick, sad, or depressed. I had 29 radiation treatments. This all just made me very tired a lot, but not sick, sad, or depressed. I didn't even lose my hair till the Ibrance.

The cancer had metastasized to my cerebral spinal fluid and bones in my spine. That was my first diagnosis. Then lots of biopsies and testing to find where it started as dr said the Lepto Menegeal did not just start on it's own. Discovered it began as breast cancer. Now stage IV.

I choose to believe that the LORD has healed the cancer. I will continue the Phesgo to keep it from returning. But no to Ibrance. Or any other pharmaceutical medication.

I am taking a 7 mushroom complex for immunity and to kill cancer cells. I take calcium, vit C, Milk thistle, and several other supplements. No. More. Drugs.

Thanks again, so much for sharing.

May God bless you and keep you. May His face shine upon you ♥