Ibrance Long Time User

[Aging69]

I have been on Ibrance since March 2018. Have experienced a number of side effects, but I am considered to be disease stable/in remission.

[Claireperth]

Good for you! 🌸

[Aprilfoolz1]

hi Aging, sounds like you are doing well- stable is great !

[Nocillo]

Stable is the goal! Celebrate!

[Discocat]

Hello, and welcome on board.Great that your stable. I'm also on ibrance...but for only about a year and a half. I don't find that I have symptoms from the ibrance...but I also take Letrozole and Zoladex to zap my estrogen and I think most of my issues are from those (achy joints, brain fog, hot flushes, insomnia)...but as this combo (together with Zometa IV) has kept me stable too that's what matters!!

Sending you best wishes.

Zoe xx

[Mumberly]

welcome! Congrats on 5 years. That’s great.

I am also on ibrance, but new to it since September 2022. Plus letro since Jan 2022. Side effects are pretty minimal and scans are showing stability/improvements so I’m hoping to get a long life out of this medication combo.

You’ve joined a great group here. All the best,

Kim

[NPmary]

5 years, that's great ❤️🧨🎉🎈🧨🎉🎈❤️

[Merma]

Hi,

Congratulations! I have been on Ibrance since the end of 2017 and am also in remission. The first 3 years, I was on the 125 mg dose, but I started having side effects and didn’t fully recover on the week off, so my dr lowered it to 100 mg. My wbc never fully recover, but I have very few other side effects. If I did, I suppose my dr would lower the dose again. I think the lowest dose is 75 mg.

Some people have been using a 5 day on/2 day off schedule, but my dr is not a fan of that. My Gyn onc says that I might be able to take an Ibrance vacation, but the hemo onc is probably not going to go for that. It’s working- hard to consider rocking the boat.

[Jorgit in reply to Merma]

That is amazing...more than five years!! I know it may not be easy sometimes with side effects, but you give us hope. It is possible to go for a little break with ibrance e.g severe infection, programmed surgery...the only thing is, that it would change your 28 days blood works schedule. Kindest Regards!

[macspow]

Congrats! Great results!

[penpen18]

Congratulations! Celebrate!

[Zebra2018]

I am also on IBRANCE , xgeva and faslodex since end of 2018. I lost most my hair and I have a very dry skin all over my body! These are noticeable side affects I can see. Last year my ANC was under 1 so he changed it to IBRANCE 100. So far I am ok! Till when no body knows?. I wish everyone the best.

Sima

[Jorgit in reply to Zebra2018]

Hi Zebra2018...I know it might not have been easy, but 5 years and Ibrance still doing the job, is great news for all of us, as there are no medium-long term evidence and studies, as it is a relatively new drug. As well, you are using fulvestrant like my mum, and she experiences sane as you very dry skin and loss of hair. Could you please share with us, if it is pissible, when and why did they add capecitabine to your treatment? Kindest Regards.

[Zebra2018 in reply to Jorgit]

hi Jorgit first let me to thank you for being a lovely and concern daughter that every mother especially mothers like us need THANK YOU. I have MBC on my neck (bone) and I am on xgeva shots that started every months then every three months and now on every 6 months. I don’t know how long I will be stable? But I am happy that so far it is and hopping it stays that way until my time comes up!

[Jorgit in reply to Zebra2018]

Thank you for your reply!! In this case I am a concerned son, but same as I would be, should I be a daughter. As mentioned before, as years go by, patients like you, set up the example and you hopefully stay many more years to come without progression, bringing hope to chronifiying the disease which is the major milestone to achieve. Take care, and keep us informed from time to time. Best Regards.

[Zebra2018 in reply to Jorgit]

even better now I know that you a son. Congratulations to you and your mom. I don’t have same luck but I manage to leave without!

[Aging69 in reply to Zebra2018]

Pharmacist recommended I use baby shampoo and cholesterol conditioner. My hair started to grow back. I took hair vitamins and now use Dr. Miracle hair products. Try using lavender soap and lotion.

[Sharon0122]

congratulations!🌷

[Liessie2014]

hi Aging 68, that’s fantastic news , ❤️

[Liessie2014 in reply to Liessie2014]

sorry , put 8instead of 9 ❤️

[Goga156]

Congratulations! have you had any new metastases at any time or have you been stable in all years of using Ibrance?

[Aging69 in reply to Goga156]

I have been stable all 5 years.

[chemohawk in reply to Goga156]

I started Ibrance in the fall of '16... then mets started shrinking, then went to stable, then went to "No Evidence of Disease" within a year or two. Still on the same regiment... 100mg. Ibrance, Faslodex and Xgeva. Best of luck.

[Goga156 in reply to chemohawk]

where did you have metastases?

[13plus in reply to chemohawk]

wow that’s an incredibly successful long run!

[OneLump22]

Ditto. 🎉 Congratulations! 🥳

[viennagirl]

I also take Ibrance (Palbociclib). And I also take Letrozole. This combo seems to work for me as I am now NED. I have scans coming up in April so this happy trend continues. I am on this combo for about three years now. I wish you the best of luck with this drug. I know some people are on it for a long time. Hugs Marlene

[Aging69]

I used Dr. Miracle hair products and my hair grew back and thick. Pharmacist recommended I use baby shampoo. My dose is 75mg 2wks on and 2wks off. Take Exemestane MWF. The side effects are causing me to have extreme pain in my back and lower extremities. Been in PT several times. Not sure what to do next.

[Best521 in reply to Aging69]

Great tip. I was getting ready to switch to baby shampoo. Which Dr. Miracle hair products do you use? My hair needs a miracle 😃.

[Gingerann1]

Wow! It is so inspiring that so many of us are getting to NED! I reached it after 15 months on Ibrance and Faslodex 13 months ago. It is amazing what these therapies can do. Just praying that those therapies in the hopper can give more hope and longer lives until we finally beat this beast! Best to all….

[JilE]

That’s great!

[michelangelina]

I started on ibrance/letrozole in May 2018--just a couple of months after you. I have also been stable this whole time. Congrats to a fellow long-termer!

[Highlites-63]

I’m so happy for you. Congrats keep up with the good work.

[Mermaiden]

I’m also an aging 69 year old, well for another month anyway. I was diagnosed just a few months before you with MBC and have successfully been on Ibrance and Letrozole the whole time with no further incidence of cancer. Five years and going strong, I hope we can both reach aging79 and beyond!

[KimberlyB40]

Congratulations!!! Out of curiosity, are your scans reading no metabolic activity, or just stable?