Ibrance/Letrozole

[Gmaoftriplets]

Hello, I was wondering if anyone has been on Ibrance and Letrozole longer than 5 years.

I have. Been on this treatment now for 5 1/2 years,.

Thank you

[Susan1953]

I am right there with you. Ibrance and letrozole since April 2017, diagnosed de novo with bone Mets.

[Gmaoftriplets in reply to Susan1953]

That is good to hear. I still have my tumor which has grown and has had some uptake, lately it has been a little painful. My bone mets was one lesion on my acetableumm. PET scan next week so anxiety is high.

[Jenniferp2122 in reply to Susan1953]

wow that’s awesome! Do you have any genetic mutations? What type of MBC do u have?

[Gmaoftriplets in reply to Jenniferp2122]

I have HR PR + HER 2 ~. I do have a genetic mutation called the”ATM gene”. Which is a 50% chance of breast cancer and a few other cancer’s.

[Jenniferp2122 in reply to Gmaoftriplets]

I gotcha! My father has the BRCA 2 mutation and I am worried it will hinder his ability to be in Ibrance and letrozole for a long term but he just got NED after his first pet scan post starting treatment. He began treatment in June and has NED so I’m keeping everything crossed

[morty87 in reply to Gmaoftriplets]

Wow - I have never heard of anyone else with ATM mutation. I also have the Chek2 mutation that makes me even more susceptible to a variety of cancers. I've been on Ibrance and Letrozole for nearly 5 years with excellent results.

[Aprilfoolz1 in reply to morty87]

I also have an ATM mutation ! I've been on Ibrance / Fulvestrant for almost 3 years . Hoping for 5 + like you

[Goldenday4 in reply to morty87]

That is excellent to hear that it was effective. How were your side effects? I have heard from people with really bad side effects that they couldn't stand. How was your experience?

[morty87 in reply to Goldenday4]

I have some joint pain, but it is manageable. Some days are worse than others. I take a daily Claritin and Alleve to help with the pain. I work full time as a teacher and I take every opportunity to rest on breaks and weekends. There has been weight gain, but the trade off is that I have been NED for 5 years. I pray I continue to have good results.

[Aprilfoolz1 in reply to Gmaoftriplets]

I also have the atm gene . So happy to hear you are 5 plus years on Ibrance . I am almost at 3 years. Sending you good energy and "in your pocket" for your upcoming scans . I know a few woman who have been on Ibrance more than 6 years. A couple were switched from femara to fulvestrant when they had a small progression (same Mets location, just larger or higher FDG level ). They are still stable . Let us know how your scan goes !

[Gmaoftriplets in reply to Aprilfoolz1]

wow, nobody I know in my family or even my support group had ever heard of that gene mutation let alone have it. My last scan in March showed a higher fdg level in my tumor but the mammogram and ultrasound actually showed decrease in size the tech said I could have been given to much tracer. Scan anxiety is high !!

[Aprilfoolz1 in reply to Gmaoftriplets]

I had brca testing in 2008 with my stage 1 node negative bc which was negative. I completed chemo , rads surgery and 7 years femara . It was recommended that I have a genetics panel at 10'years and atm was found . My mother is 85 and super healthy , never has had any cancer and she has it as do both my sisters (one had a pre cancer pancreatic tumor in 2012) . My cancer center put me in a high risk clinic for pancreatic cancer in 2018 due to the ATM and added a breast mri at 6 months (mammograms 1 time a year at that point ). 2019 my stage IV recurrence was discovered - not by mammogram or mri , but due to a paralyzed vocal cord ! Sigh ....

[Gmaoftriplets in reply to Aprilfoolz1]

I don’t know if anyone in my family has the atm mutation. I’m an only child and my dad passed away from lung cancer due to smoking and my mom is a very healthy 95 year old. My oncologist was not concerned to much about the atm as she was more concerned as to whether or not I had the Braca gene because I am Eastern European Jewish.

[Tantalon7211]

that’s wonderful news and good to hear that you’ve had over 5 years of treatment with no progression.

I hope I can say the same as time goes on- I am only in my second month of this treatment and feeling some side effects - fatigue and nausea at times - but hope it keeps my one bone pelvic met at bay for many years.

Thanks for your note

[Red1246 in reply to Tantalon7211]

I hope this for you too! I’ve been on the combo for 2 years and aside from being tired end of the 21 days, and some dizziness (usually if I’m dehydrated), it doesn’t bother me so hope it works for a very long time. 🙏🏻

[Red1246]

That’s great, inspiring news! I’ve been on this combo for two years and hope to remain on it at least 5. All the best to you!

[8576]

That is encouraging. I am Verzenio which is supposed to be a sister drug to Ibrance and it has been working for me since March. Scans next week. So I will let you know.) I am on Tamoxifen the lowest dose, as well. I am 82 so if it lasts 5 years I will be happy.

Cheers, June S.

[love2golfwell]

That is so awesome to hear. I have been on this combo for almost 2 years and have been doing well so far. I hope to have 5 or more years of success on this combo as I am tolerating it well. Hope you have a good scan. Sending hugs.

[Kiss_my_grits]

congrats! And that makes me so hopeful. 5 years would get me to my oldest sons high school graduation 🙏🏻 I wish you continued stable health

[Jaynikan]

so good to hear, i am on this for the past two years and its working well so far .i have tiredness reduction in platelets at the end of 21 days and it improves afterwards. My teeth are turning black .but i guess this is a small price to pay against keeping cancer at bay .your post is giving hope for me to continue the treatment for some more years.

[Jaynikan]

one more query ,how often do you take pet scan

[Sister3nkc]

Hello,

I was on Ibrance(125mg) and Letrozole from March 2015 to September 2021, 6½ years! Unfortunately this combo stopped working for me (met to L1 vertebrae) I was changed to faslodex, and more recently also started taking Kisqali. All genetic testing for me was negative. Had radiation therapy to the L1 vertebrae.

My 1st diagnosis was May 2000 with stage 1b, underwent IV chemo and radiation therapy. Then mets found in left lung in 2015.

I tolerated the ibrance very well, even at the higher dose. Wish I could have stayed on it! The Kisqali causes much worse fatigue and more of an issue with lowered RBC's and WBC's.

Good luck to you!

[Merma]

Hi there!

I’m almost at 5 years on Ibrance and anastrazole as maintenance for recurrent endometrial cancer. I’ve been in remission the whole time. Started on 125 mg dose of Ibrance, but after 3 years the blood counts didn’t recover on the week off, so since then I’ve been on 100 mg. Mostly stayed healthy and active. The dr thinks that I could be on this regimen for 20 years or more. Still getting scans every 6 months because that’s the only way we know if the cancer has come back.

[Hidden in reply to Merma]

This really helpful too read

I am also in same meds almost a year

My Ct scan is this Friday ...will know Oct 4th....This is always important to me...My L in my lower back cause me discomfort

Doctor said radition...will help this

Spot radiation its called

For one week

Smiles

[Merma in reply to Hidden]

Radiation is what knocked out my two recurrences. Good luck on your scans!

[Enie]

just went off it after 3 years. The joint and bone pain got to be too much

[Gmaoftriplets in reply to Enie]

I have a lot of bone and joint pain as well, but I also have arthritis so I never know what is causing the pain.

[Tam-56]

Congratulations to you! I’m happy this targeted treatment has been successful for you! I’m just passed 4 years in May and doing great!

[Gmaoftriplets in reply to Tam-56]

thank you I hope it continues!

[Drsalome]

Hi. New to this thread. What is ibrance for? Im on letrozole and have been hesitant about the bone med (zomata) the onc suggests.

[Hidden in reply to Drsalome]

Hi From my understanding it is a blocker also ..l have been told its small chemo...Some say it's not Chem but a form

Of it ..lol what that means

Take it be happy

Heal

I am on it doing good

One year now

Takes a bit for the changes in your body....it works

Hugs

[morty87]

I will be 5 years in January. I hope this plan works for many years to come.