Ibrance on Hold

[George5545]

Hi all,

Hope everyone is doing ok on on this roller coaster called life.

I wanted to check in and see if anyone has ever had to pause their Ibrance. My mom somehow contracted Hepatitis A (the "friendly" hepatitis your body should be able to fight off on it's own) and her oncologist took her off Ibrance to give her immune system a chance to fight it. That was on 8/28/20. She is still taking the Letrozole.

We will be pushing 8 weeks off. Her liver enzymes were tracking down, but she had another blood draw last Tuesday and they were the highest they have ever been, so we are gack to the GI doctor this Friday. No idea what the protocol is or what is in store there, just hoping for no additional bad news.

Right now the biggest problem is the length of time she has been off of Ibrance. It is casuing her great anxiety and I was hoping some of you might have situations where you had to take a lengthy break, and there was no serious reprocussions (ie: tumors gowing/spreading).

Thanks so much,

Deanna

[Hidden]

Hi Deanna,

What a shame about the Hepatitis!

I know I've read accounts here of people taking breaks from Ibrance with no issues, but I'm not sure how long, I'm sorry...But did want to mention (although you probably know this...) that I'm pretty sure that Letrozole, taken alone, was a standard treatment before Ibrance and similar were introduced a few years ago. So it has proven to be effective on its own and combining it with the Ibrance sort of boosts it, doubling the time it works. I imagine there's a slight risk of taking time off from the Ibrance, but once she's able to resume she'll be back on track...

...Part of me wonders (*this is mostly uninformed speculation*) if there might actually be a potential benefit of the break. There was a study put out by Dana Farber a couple of years ago which showed that taking a 6 week break (if my memory is correct) sort of re-set/restarted Ibrance's effectiveness. I don't know how long your mom has been on the combo, but if it had started to run out of "juice", maybe the Ibrance break will recharge it a bit? Glass half-full/silver lining way to view it?

I assume the liver enzymes are about the hepatitis...I do hope they're able to get that under control.

Best,

Lynn

[Betbop]

I had to have a serious surgery ( not cancer related ) 2 yrs ago and my oncologist took me off Ibrance for almost 3 months luckily I had no I'll affects from being off for that long.

[Dolphin_]

Hi sorry your treatment has stopped .I have problems after every cycle if Imbrance treatment is halted for 1 week or 2 as my white cells crash and I have no.immune system .keep strong hope things improve

Best wishes xx

[stardust1965 in reply to Dolphin_]

Hi Dolphin, what dose of Ibrance are you on? I had the same issue so eventually ended up on the 75mg dose. This has significantly reduced my fatigue and keeps my neutrophils hovering around the “just acceptable” mark. Vicki

[MCBS]

Was off Ibrance sox months due to Covid-19 - No progression during that time!

[stardust1965]

Hi Deanne, four months in from starting Ibrance I had a total thyroidectomy operation for thyroid cancer and had to have an Ibrance break for a couple of months. I was nervous about it but my breast care nurse reassured me it would not affect things in the longer term. I am nearly two years in and going strong. I wish your mother the same. Vicki x

[George5545]

Thank you all for your responses! I’ve shared with mom and they have helped her some. Just knowing that others have had to take a break without ill effects certainly gives us a little hope. ❤️

Deanna

[mariootsi]

I was on letrozole for almost 5 years after I completed treatment my first dx. Clear scans during that time.

[kearnan]

Everybody is different so one person's story does not mean your Mom will have the same reaction. I was only on it for three months (my first med) and then a simple infection that in the past used to be stopped by antibiotics came and my body could not fight it. I wound up having invasive surgery and had to get off the Ibrance (but was still getting falsodex injections). It still took my body almost another four months for the invasive holes in my leg to close on their own. They found a new tumor had grown in my breast (I was diagnosed with stage iv) behind the original one. But I was so unhappy with the Ibrance (I did not know anything about cancer and did not know I could have or should have been put on an lower dose after my first week off was hell, and second and third.

Luckily, though I had biopsies and it turned out to be the same type of hormonal cancer that I already had. It would have been problematic if it turned out to be different. That is when I learned you could actually have two different kinds of breast cancer in one breast.

[8576]

I have nothing new to add. I was taken off Ibrance due to an upcoming surgery. Was off for 3 months. No progression. Not even 9 months later. Been juggling doses to try and find one I can tolerate. I am on what I thought would be the last try: two wks. on, one wk. off. I can barely tolerate it. My immune system is just in the acceptable range. I have no side affects from the Ibrance or Faslodex. But have often wondered if I need both since in between each dosage change I was off Ibrance for a month before trying the next level. So glad they are now looking at dosage levels to determine what we really need.

The best part is the lower side affects while still controlling the disease. I think a good case is Sarah. Her case is what got me thinking. She is so fatigued she can hardly do anything. Sounded to me she was overdosed!! As Sandra always says we have to have the best quality of life possible.

Wishing you well on your journey. Keep informed for yourself. Keep asking the doctors for answers. It is amazing what takes place when we persist on getting answers. I don't mean aggressively, just following that gut instinct.

After all, we know best how the treatments are working or not.

Cheers, June S.

[Mypathforward]

Hi Deanna,,

Have been off 125 mg. Ibrance for 6 weeks to address a severe kidney and UTI that required a 6 day hospital stay after kidney stone procedure. I developed sepsis, e-coli and some other bacterial infection. I had my CTs yesterday so I don't know what impact that may or may not have had. Should know soon but tumor markers are good. I was diagnosed with MBC April 2019 in bones, lungs and lymph node in clavicle after primary cancer of 2003 reared its ugly head again after 16 years. I am hopeful there has been no progression and will let you know. I wish Mom all the best.

Patti

[Mimigram]

Hello,I have been off Ibrance for four years which was my decision. I kept getting real low CA 27/29 readings so I decided to try taking supplements after reading Jane McClelland’s book How to Starve Cancer. Over the past couple months my tumor markers have been on the rise which is causing me anxiety. Nothing showed up on my recent pet scan so we scheduled a CT scan next week. Reluctantly I will have to probably go back on Ibrance.

Mimi