I've been on Ibrance and anastrozole for 7 years. The Ibrance got toxic, so I had 2 recurrences. We lowered the Ibrance to 75 mg. No problem. But I was still concerned so we added Metformin. Now the Ibrance is toxic again, so I am off that. I am still in remission. Possible next steps are everolimus, anastrozole, and metformin OR (my idea) fulvestrant and metformin since I am still in remission.
Did anybody else do this? I am going to get 2nd and 3rd opinions from doctors, but I'd like a patient point of view.
Thank you.
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Merma
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I went from Ibrance/Letrozole to Fulvestrant as my blood values went bad. Only been 3 months so no idea if it is working. Blood still bad, but my doctor sais better than on Ibrance. Miss Ibrance, not feeling well on Fulvestrant. Very tired all the time.
Hi Merma, I'm so sorry to hear that Ibrance became toxic for you after seven successful years on it. I've been on it nearly seven years myself, successfully as well. I'm struggling with fatigue more and more tho and wonder if it's the Ibrance.
How are your red counts? I was anemic the whole time until we switched to the 75 mg. Then, I was closer to borderline anemic or sometimes even normal! The way I know my neutrophils are low before the cbc test, is that my chronic athletes foot bothers me.
Thank you. Blood counts are always low, but the neutrophils were well below 1.0 and took longer than a week to recover. At one point it took 3 weeks to come up from 0.51.
Yes, plus I had recurrences because of being off so long. Did fine for a while after the doses were lowered, but those darn neutrophils dropped down again. Then my Signatera test came back positive. So, there’s no choice but to make the change now.
I'm feeling the same and only 18 months in. Have you tried 5 days on 2 days off or 3 weeks on two weeks off? I've seen many here on those schedules. I'm already on 75 and am dreading my next cycle. It's exhausting.
Yes, that worked for a couple of months. I’ve looked at other schedules, but I think it’s just been too long. My Dr is uncomfortable with trying the different schedules at this point too. 7 years is a good run.
My thought is to get off of it and go onto it again in a few months after changing things up. Not sure if it’s too late for that?
"Off Label Use" general info: Metformin is considered "off label" use for cancer, can be very effective. Off label just means that doctors use certain drugs for things other than originally marketed for. MANY, MANY things have cancer fighting off label use. If you are in remission, another option which conventional oncologists won't deal with, but a good integrative doctor or oncologist will, is to get onto TM: tetrathyiomolybdate. My understanding from my integrative onc is that when someone is close to or in remission, this can get folks into and keep things in remission for many , many years, but does need close monitoring for bone marrow suppression. Evidently does not need to be taken lifetime, but certainly for several years. Mark Rosenberg, Carol Laurie, Dan Rubin, Nalini Chilkov, Petra Ketteral, Mark Hancock (also works with mistletoe), Michael Karlfeldt, Leigh Erin Connealy, are ones I know that are familiar with TM...I'm sure many others are as well. If you explore this, you'd need to check your current blood work before TM could be considered....
I also wonder what you mean by "toxic." To me, that means a severe allergic reaction.
Also puzzled by "in remission." My oncologist and most that I know of say we are never in remission. We can be NED or NEAD (no evidence of active disease), but the cancer is always there, microscopically. There is no cure -- although for some levels and types, there is still hope for a cure.
I thought Metformin was commonly used for mbc before the new treatments were created.
I am refering to my cbcs not recovering. Some times on the cmp, the liver counts are higher. We’re not going to wait til there is a problem in the liver. Hence getting toxic. Honestly, only thing I feel is my chronic athletes foot bothers me when my neutrophils are very low - under 0.8.
Yes no cure, chronic cancer, but my drs at UCLA still call it remission in between recurrences. Not going to complain about that. I’ve had 4 recurrences.
Don’t know a lot of prehistory on Metformin. The study reviews are inclusive at best, but it doesn’t look like there’s much downside to giving it a try.
Oh, your docs at UCLA use "remission." I certainly wish my doctor had done that! She wouldn't even use NED. I had to cheer the times there was no detectable cancer by myself, because I think she likes only bad news, or she doesn't want me to make too much of it.
My doctor does say we treat it like a chronic disease when I get recurrences. He also calls it well-managed cancer. That sits right with me. I have allergies and asthma. Some which cause anaphylaxis. That is also a chronic disease that is well managed.
So, while recurrences are no fun. I do take charge of my treatment choices now. I am highly proactive and research everything. I want to be in the driver’s seat and weigh my choices carefully.
The great researcher who gave the keynote at the MBC conference a few years ago said that we should be but are not yet at the point where we can treat it like a chronic disease.
There are seemingly many people here who have survived 7, 10, even 20 years. That is because the ones who survived for a shorter time are not posting for an obvious reason. I guess I am the voice of doom and gloom because I lost my best friend to mbc last week, six years after her diagnosis.
Been on this journey since 2015. It’s been a whack-a-mole process through and through. One of my drs, the surgeon, told me that they would treating this disease for about 20 years until they couldn’t. In the back of my mind, the clock is ticking.
But, there are new options coming up. I am hoping the new PROTACs will make a difference and the new adcs. Also, they are looking at new forms of immunotherapy that would work for us. Everything is in the earlier stages, but things that are really promising can be fast tracked.
Yes, all the new things. Thank god. I would be out of options except for IV chemo if it weren't for something that got approved in the last two years.
But you have endometrial cancer! It makes sense, then, that your oncologist uses somewhat different language. I understand you are in this group because there is so little research on endometrial. This is where the action is and it is useful for you. Still, there might be differences in prognosis?
You certainly have been through the wringer with the increase in your allergic reactions - anaphylaxis.
Ah, Tammy! We don't have access to all the bc drugs! Even now, I'm fighting to try Imlunestrant. Research is so behind in ec/uc because lack of money. I am trying to start a foundation just for us: the Endometrial Cancer Research Foundation. It's mission is to bring EXISTING drugs over to ec/uc with the same mutational profiles. Currently, patients who ER+ PR= HER2- PIK2ca , pmmr, ms-stable, tmb low tumors are being pushed into chemo or immunotherapy (with a lot of side effects because they have to add a lot of bad side effect drugs to make immunotherapy work even for a 2 - 3 yr pfs). While over 50% of us are in this category, the patients don't even know they are because drs can't really give us them. It's listed in the NCCN guidelines as specific cases only.
That is hard. Good for you to try to fight for research. How do you get researchers/pharmaceuticals interested? I guess they have to think there is a market.
I don't understand what "Ibrance got Toxic" means. I'm interested cause I was on it for 5.5 years. Can you explain what "Toxic" looked like? I'm now on Piqray/Alpelesib. OMG!! Talking toxic! My nails are disappearing. thid drug is poison.
Hi Timtam…I certainly feel exactly what you are saying about toxic Piqray…I’m in my second month of reduced dose (250) but I feel so fatigued with very low RBC counts. Nails are down to nubs which seems hardly a big problem…but just try to do stuff for yourself when tiny cuts and infected cuticles cause shooting pains…oh well. Never mind. I am looking forward to better meds that treat the cancer and don’t destroy our bodies.
Cbcs not good - neutrophils not recovering, cmp, alkaline phosphates and aspartame aminotransferase started going up. All those counts were not looking good, so no need to wait for them to get worse.
I’d like to just do metformin and a serd for awhile since there’s no cancer going on now.. Trying to stall the next level up the pik3ca pathway to everolimus. May be too late mutation change wise.
Update: Signatera ctDNA test came back today. Low positive for minimal residual disease. So, I am going on everolimus, and staying on anastrozole and Metformin. In six months, we'll see if the SERD that I want will be available re-evaluate if it makes sense to switch to that. Still going to go to the other appointments for 2nd, 3rd, and 4th opinions, but, looking at the research, I think this will work out, for now at least.
Hey Merma! Everyone is different as we well know, but I had such a tough time on Everolimus and anastrozole (which I love) I got every side effect in the book until it gave me lung inflammation and was taken off after 3 months. It was not the anastrozole, which has worked miracles for 19 months Just a heads up to speak up about side effects early with this drug. Best of everything.
Thank you so much for responding and for the heads up. Just started it yesterday. My Dr put me on the middle dose, but said he’d lower it if necessary. Did your Dr lower your dose?
Hi if I replied twice, sorry the first one disappeared. My doctor started me on the middle dose, when things started to go south. She didn’t want to lower it to the lower one until she saw the results of a pet scan to see how it was working.. by the time I got to Pet I had to come off of it because of all of the side effects and not being able to breathe, which is always nice to do she said she was not quite sure how the very low-dose affects their results. That there were not stats that support results from the lowest dose.
Hah! I do synchronized swimming! That whole breathing thing is overrated! Just joking. We have to smile and look like we’re not actually gasping for air after being upside down and doing things with our legs for what feels like eternity.
Really, though, those side effects sound gnarly! I keep looking at research that may support eventually going back on Ibrance. Even with low neutrophils, I never felt bad.
Hi Merma. I've been on Everolimus and Exemestane since May 2023. I started on the 10mg dose but had GI issues right away so switched to 7.5mg and have had no side effects except my Hgb AIC did start to rise after about a year so we decided to start on Metformin 250mg tablet once a day to counteract it. I get scans(CT & bone scan) every 3 months and my results have remained stable. I'm due for scans next week and hope for stable again so I can continue on this regime hopefully for a long time. I must say I'm glad I trust my oncologist and we have a fabulous working arrangement because it would absolutely drive me crazy to be going for all those appointments/opinions. Good for you if it doesn't bother you. I like to minimize the time I spend at the cancer center. Take care and I hope this treatment suits you as well as it is doing for me.
Ha!!!! I was on Kisquali (Ibrance's kissing cousin) for 3 weeks...got Covid and liver enzymes went bananas so they took me off. But besides liver enzymes I felt great no side effects
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Just a heads up to speak up about side effects early with this drug. Best of everything.
N. E. D. on Ibrance 
Anyone on Exemestane?
Coming off Ibrance and fulvestrant. Not feeling great. 
Anyone go on Verzenio after Ibrance stopped working?
