Anyone reach stability with Ibrance long enough to get off meds??

[SushiLife]

I am so thankful for the advancements in treatment options for MBC! While I’m grateful to be alive because of Ibrance/Anastrozole, I had always thought if I could make it through a 10 yr stretch I would be considered cancer free and stable. But my dr says the drugs are pretty much forever. I was holding on through the many side effects, thinking I can make it bc relief is coming someday in the future. But no. Any out there been able to get off Ibrance and remain stable???

[Merma]

Hi,

I had the same question. I am in remission from endometrial cancer and have been taking Ibrance and anastrozole for over five and a half years. The dosage was lowered to 100 mg at around 3 years. I have seen two gyn oncs that said that I could take an "Ibrance vacation," but I haven't seen any research to support that. My hematology onc agrees with me and says that I need to stay on it. He thinks I may be able to keep going on this regimen to the 10 year mark. Given that I had two recurrences before starting this combo, I am planning to stay on it. As for long term complications, he said that are all hormone related like osteoporosis. Therefore, I have seen an endocrinologist who specializes in osteoporosis.

There is good news that there are more strategies to keep treating this cancer for each progression. The key is constant monitoring.

Best wishes,

Corby

[SushiLife in reply to Merma]

Thanks so much for your perspective and best wishes for a full recovery!

[R7777]

Ibrance stopped working after 2 years… absolutely gutted.. cancer spread and no awaiting chemo..

[Building-strength in reply to R7777]

Have you been on a break from meds and for how long b4 starting chemo? I’m awaiting a new Med as well and worried that it’s been 5 weeks already without any

[TeddyChowChow in reply to R7777]

I'm sorry R7777. ☹️. Praying and hoping the chemo works well for you.

[R7777 in reply to TeddyChowChow]

thank you.. 🙏🏻 But there are still many options!!

[SushiLife in reply to R7777]

hugs and prayers for you and your team of doctors!

[Sister3nkc in reply to R7777]

Sorry.....Ibrance stopped working for me after 6½ years. Been trying to find the right treatment since. Praying for you

[TeddyChowChow]

Hi SushiLife,Gosh, I've not heard this question before. I have MBC and am on Ibrance. I understood that Ibrance is basically holding the cancer at bay not actually removing the cancer so if I were to stop taking it, nothing would be holding the cancer back. It's like I think of Ibrance as little people running around and as they see any cancer cell start to form, they run over and hit it like whackamole so the cancer cell stops forming. So I guess I consider my MBC as the equivalent of a chronic condition that is managed not something that will be fixed so I will always be on some form of medicine. I'll keep watching this discussion because I do want to know if there's any research that says Ibrance can do more than maintenance!

Stacy

[SushiLife in reply to TeddyChowChow]

Whackamole! Yep! And I am learning that it doesn’t take it away so am adjusting my expectations and focusing on how grateful I am to have it. Thanks for putting it in a more lighthearted perspective!

[Merma in reply to TeddyChowChow]

Great analogy!

[HoneyBadgerLady in reply to TeddyChowChow]

I like the whackamole metaphor. It's definitely a chronic condition. I read a quote that has helped me..."Yes, someday this will kill me, but Not Today". May we a have many todays to live life.

[Sister3nkc in reply to TeddyChowChow]

Love the WHACKAMOLE analogy, lol, you made my day!

[bikebabe]

Please tell me if I’m wrong but like teddy chowchow, my understanding is that ibrance is a continuous treatment and keeps cancer cells from dividing and so we can have metastatic cancer cells that are present but not growing ie stable. It’s used until no longer effective which is usually when the cancer cells eventually get wise to it and mutate (but not sure what triggers this). Some research indicates having a short break from ibrance seems to help its efficiency.

[Hidden in reply to bikebabe]

My oncology nurse said exactly the same thing. She said it's the same as living with any chronic condition. Also said when one medication stops working there are others to try, and that I would be on medication for the rest of my life, because at the moment there is, unfortunately no cure. Hugs and best wishes.

[HoneyBadgerLady in reply to bikebabe]

That is my understanding, too.

[love2golfwell]

My understanding from my oncologist is that I will need to be on meds forever if I want to survive, just like with other chronic conditions. I know that is hard to imagine for all of us on this journey. Like everyone here I hope that they continue to come up with better meds that work but do not cause as many side effects for us so that we may have a good quality of life even though we are dealing with a serious illness. Sending you hugs and prayers.

[SushiLife in reply to love2golfwell]

you’re right - the thing to be deeply grateful for is that we’re all alive and thriving in many ways. Thanks for sharing your encouragement , hugs and prayers to you too!

[KimberlyB40]

Thank you for this question!!! March was 2 years for me on the same combo and after 3 months on this combo I've been "No Evidence of Active Disease" but every montg is getting harder for me side effect wise. The severe fatigue is almost unbearable so the 1 once suggested a break, and the other said absolutely not.if I can get 5 years with zero metabolic activity I will definitely consider it but until then... I'm 43 and would like to see my daughter graduate high school. Will be following this post. Thank you!!!!

[13Dancingdiva in reply to KimberlyB40]

hi just wanted to say that I was first dx at 42 and prayed I would get to see my kids grow up. I stayed on Ibrance for 6 yr+ and am now 51 and my daughter just graduated. You could do this!!

[HoneyBadgerLady in reply to 13Dancingdiva]

That you got 6+ years so far is so encouraging to hear. Thank you for sharing.

[Mimigram]

I was on Ibrance in 2018 for maybe two years. My tumor markers went down to normal so I stopped Ibrance. My oncologist was OK with that. My tumor markers started climbing recently so now I am back on Ibrance. I am thinking it is a never ending battle. I do think it's OK to stop it if your doctor is OK with that and then go back on it if you need to later.

[wendle3007]

I was told I would continue for as long as it was working and as long as I tolerate it. I had dosage reduced to 100mg on third cycle because my neutrophils didn't recover but have been "fine" since.

[Dragonfly2]

hello sushilife! Yes, it is forever because it’s metastatic cancer…always lurking in the weeds. What you can do is take a look at using an “easier” dosing schedule for the IBrance. I’m in my fourth year and for the last 9 months I have been doing the five on/two days off without a break. It’s much much kinder on your body and fewer side effects from neutropenia (my problem before). No more awful fatigue and mood dips. Terrible to see no cure yet…but this is a safer option than no drugs….consider it a chronic disease! Best wishes!

[love2golfwell in reply to Dragonfly2]

Glad to see you post on here. Have been wondering how you were doing. I know both of us were going through concerns about possible progression and worried what would come next. My scan turned out well and my follow up bloodwork was good, too, with my tumor marker going back down. I truly believe my marker went up after I started taking vitamin B12, so I went off of it and my marker went down. I asked my oncologist about the coincidence of this, but did not think that was the cause of the elevated marker. She said it was the lab! Her nurse practitioner was going to do some research on B12 as I told her some of the ladies on here were told by their oncologists not to take B12. Anyway, I am good for now. Hope you are doing well too on the dosing schedule and are stable. Sending hugs and prayers.

[SushiLife in reply to love2golfwell]

So glad you have stability in all your numbers. How interesting about B12! I would very much like to hear how that ends up since I take a B12. Although my tumor markers have always been low (even when the disease was very much present) I’d be interested to learn about the connection. Hugs and prayers!!

[love2golfwell in reply to SushiLife]

If I find out anything from the nurse practitioner about B12 I will post it on here. I would not have thought about any problems with taking it if some of the ladies on here posted that their oncologists told them not to take B12 or any B vitamins. Although my oncologist did not think there was a connection, that does not mean there isn't one. Hugs

[Dragonfly2 in reply to love2golfwell]

Hello! I’m sorry I didn’t get back to you about the recent scans…everything is “stable” in the bone Mets…and my CAT scan for organs was completely normal. One tumor marker went up but the CEA came down….my ONC just can’t explain the significance of these tumor marker rollercoasters. I’m feeling great and am golfing a lot…can only walk 9 holes at a time but treated myself to an electric walking buggy which takes the push out of the hills here. I had bronchitis a month ago and was no doubt feeling poorly from that and tumor markers reacted…but now I’m back to feeling like my old self. Thank you for asking…I tell you, being on the 5/2 schedule has normalized my life a lot and I don’t feel like my body is caving in under the toxic load. Thank yiu for reaching out…and best wishes for a happy and healthy future with lots of golf🥰

And that info about B12 is interesting… I can try leaving that supplement out of my schedule for a month or more to see…

[love2golfwell in reply to Dragonfly2]

No worries, so glad your scans were stable. Such good news. My marker has fluctuated since I was diagnosed, but there have not been huge fluctuations. I know some docs don't even check tumor markers. I'm so glad you are golfing a lot. I walked 9 holes yesterday as our course was cart path only and it was easier just to walk the front nine. They cleared restrictions on the back and I rode in a cart for the last 9. I'm sorry you had bronchitis, but glad you are feeling better. Also, I'm so happy the 5/2 schedule is working well for you. Maybe oncologists need to explore that schedule more and make it the standard of care to help with side effects. Just read an interesting article today from the ASCO conference about Xeloda and studies being done to see if lowering the dose can help decrease hand and foot syndrome as well as other toxicity issues but still work to fight cancer. Best wishes to you as well. Hit em straight! Sending hugs and prayers.

[SushiLife in reply to Dragonfly2]

Did not know you could do a 5/2 schedule. I will definitely talk to my dr about that! Thanks so much and best best wishes!!

[Dragonfly2 in reply to SushiLife]

practiceupdate.com/content/...

Here’s the link to the study…

[Gingerann1]

These drugs do not cure MBC they just slow progression so until there is a true cure we will have to be on meds. I have been in a period of remission for 16 months now on my first line treatment of Ibrance and Fulvestrant. My Onc says I’ll stay the course on my current treatment until the cancer figures a way around it and progresses and then I’ll move on to the next option(s). Hopefully that won’t be for a while. There currently is no period of time where you’d have periods of time off meds with the exception of a few days or weeks due to an illness or surgery, etc. While for me it is certainly a blessing to be NED (no evidence of disease) it is sad to know that progression is inevitable and I will be on cancer meds for the rest of my life.

[PJBinMI]

Having a diagnosis of metastatic bc almost always means being in treatment, on meds, for the rest of our lives. "Cure" is very rare but does reportedly happpen, but in the 19 + years since my diagnosis, I've never met or heard of a specific person who's been cured, and I've been to several BC and MBC conferences, including the San Antonio BC Symposium, the biggest conference in the US for oncologists.

[13Dancingdiva in reply to PJBinMI]

19yrs+ yay!!! That’s hopeful for many of us. Are u still on first line of treatment? I’m on yr 9 and I think Ibrance gave me soooo many yrs.

[Eliactida1955]

I made it with three but I know of someone taking it 7 years so it could happen

[Timtam56]

I have been told by my oncologist regularly, that I although I am stable on these drugs and have been for the last 5 years, that being metastatic means that I am palliative and will always be. But that I can have a good life compared to years ago when these wonderful potions were not available. I’m happy with that, as I was told by many people that it was all over for me, when i was first diagnosed.

I can’t believe that I’m still here and still doing so well after five years. and who knows how long I had this HER2 Pos cancer for before diagnosis. So even though the side effects a huge sometimes, and just lingering at other times, I feel very thankful and could not wish for more.

I sometimes get really excited when I get yet another response (monthly) from my onc, that I”m still stable etc. But she always calms me down and says, You know you are still palliative, but your’e doing very very well.

[kkrouse]

I did reach NED, no evidence of disease, on Ibrance. However, it destroyed my white cells etc. So I stopped ibrance . But stayed on hormone blocker Faslodex. With MBC you will probably always be on something. I had 3 years on Faslodex only until a new lesion was found in my pelvis.

[SushiLife in reply to kkrouse]

I’m so sorry a lesion was found. Praying for all of us. Yes I am expecting medication for the foreseeable future and thankful it exists. Tks for sharing.

[hurricaneheather]

mBC dx, July 2015. started Ibrance , Letrozole, & quarterly Lupron injection, Aug 2015; take 'Ibrance vacations.' was told treatment is for "for life." questioned "for life" immediately, and stated it would be readdressed. have been NEAD since Mar 2016. with Jan 2023 PET/CT scan results, scans are now once a year. via Signatera, had third of eight quarterly blood draws, for ctDNA, at the end of May 2023. all three results have been"0.00"- no detection of fragments of the cancer's DNA. still on first line of treatment. will readdress treatment plan, after the fourth ctDNA blood draw.