Long term survivors taking ibrance

[Greatday2]

I just started Ibrance and letrozole. I would love to hear from people that have had success with this combo for 4+ years.

[morty87]

Currently I have been on Letrozole and Ibrance with excellent results since January 2018. I pray this cocktail continues to work for a long time. The only change has been lowering to 100 mg. I had hip, spine and brain mets. I had gamma knife on my brain and radiation on my spine and hip. Good Luck and God Bless!

[Greatday2 in reply to morty87]

Thank you for sharing!

[awesome4ever]

I was on Ibrance and Femara for 5 years with great results. I started my 2nd line of treatment at the end of March and hoping to get a good run on that as well...however I know that with each subsequent treatments they tend to lose effectiveness quicker.

Ibrance was a fabulous treatment for me with minimal side effects. I wish I could have stayed on it forever. I wish you much success and a good long time of PFS. Take care.

[Gonnawin]

I was on Ibrance and Letrozole for 5.5 years. Worked great and I had very few side effects, like fatigue and some stomach issues, only in the beginning. Only in the last 3 months I have been switched to Verzenio and Faslodex.

[Titaniam_Turtle]

I have been Ibrance for 7 years. I am not even sure what side effects I have anymore it has been so long. One thing that does bother me is my thin hair. I had to have chemo for another cancer 3 years ago. I stopped Ibrance/letrozole for 4 months. My eyebrows and the front of my hair have not fully grown back in. Given, that my mets have not changed at all in 7.5 years, I think I can live with that. I also get Xgeva every 3 months. I am still on this regime and hope that more people can be as fortunate. Good luck!

[Greatday2 in reply to Titaniam_Turtle]

That's great to hear! Did you have any other treatments (like chemo) before starting on ibrance?

[Titaniam_Turtle in reply to Greatday2]

No, just surgery, radiation and then Ibrance. I did stop for 4 months toget chemo for another cancer and went right back on. That was 3 years ago.

[Ph17]

Hi there! I have just switched to faslodex after 5 years on ibrance!

No real side effects except for dry skin and thinning hair. I just got the most glorious hair extensions though!!🤣

Hope it goes well for you💕

[Greatday2 in reply to Ph17]

Thank you for your response! Did you have chemo before going on ibrance?

[Ph17 in reply to Greatday2]

I did have chemo almost 10 years ago with my primary diagnosis.

Ibrance was my first line treatment with MBC

5 years on Ibrance now faslox. Apparently because it’s still an endocrine is still forts line?

[Lilywallytootsie]

I have been on Ibrance and Letrozole for six and a half years. Started out at 125, dropped to 100 after several years and dropped to 75 a year ago, which is where I am now. Hope it continues to work. The dosage was lowered because I had no energy. My age is 77 so that may have been a contributing factor in having no energy. Was originally diagnosed with stage 1 breast cancer in 2000 and diagnosed with Mets to lungs in 2017. Good luck to you. Blessings, Hannah

[Titaniam_Turtle in reply to Lilywallytootsie]

I went from 125 to 100 for the same thing. Still at 100.

[Lynn-in-California]

I have been stable on 125 mg Ibrance + Letrozole for over 8 years, since June 2016 when I was diagnosed as stage 4. I am age 63 and have metastases in my lungs. I feel very lucky!

[Kahe in reply to Lynn-in-California]

Hi Lynn, I am always so pleased to see someone post who has mets to lungs....and clearly doing so well. I hope this success continues for you and that you feel well. I have several tumours in my right pleura, on.letroz and ibrance, max dose. I hope you don't mind me asking a question? Have you made any other changes to your lifestyle that you believe may be helping you get such great success on this rline of treatment? Thank you , K

[Titaniam_Turtle in reply to Lynn-in-California]

I went on it in March of 2016 but was off for 4 months so I have been saying 7 years. I guess I need to up it. The woman at CVS Specialty said I was the longest she had heard. I will tell her about you next time!

[Merma]

I’ve been Ibrance and anastrazole for almost six years. I started out on 125 mg, and to 100 mg at about 2 ½ years. I am just now having a recurrence. There is some fatigue, and I am pretty active. So, I sort of plan my energy each day - as in not planning to do heavy exercise and then spend hours shopping.

[Titaniam_Turtle in reply to Merma]

Thinning/frizzy hair and fatigue probably are my 2 biggest side effects now that I think about it.

[Merma in reply to Merma]

Update: after 2 recurrences, the molecular profile didn't warrant changing anything, so I am still on Ibrance & Anastrozole. Reduced Ibrance to 75 mg and now over six years.

[hurricaneheather]

mBC to right pluera and pleural effusion diagnosis July 2015. treatment: Ibrance, Anastrozole, Zoladex, began in August 2015. started with highest dose of Ibrance and went to lowest dose at beginning of 2016. NEAD since (March) 2016. still on first line of treatment. integrated approach to health and well being.

[Greatday2 in reply to hurricaneheather]

Can I ask what other things you did for your health?

[hurricaneheather in reply to Greatday2]

it's a myriad of 'things' that i was doing prior to the initial diagnosis in 2011. i have adjusted 'things' as necessary over the years. off the top of my head: attitude/mindset. meditate. acupuncture. enerGy work. yoga. walk. exercise. nature (bathing). travel. plant based eater. homemade green juice. supplements. Traditional Chinese Medicine. may you find what works for your mind-body.

[Greatday2 in reply to hurricaneheather]

Thank you. Would you mind sharing what supplements you take? There's so many mixed reviews online. I'm also wondering what you put in your homemade green juice. I just recently bought a juicer.

[hurricaneheather in reply to Greatday2]

green juice: all organic- cucumber, broccoli stalk, kale or spinach, celery, granny smith apple. with regard to supplements, there are many. some recommended by the "metabolic" doctor. a few: multi. zinc. vitD. vitK. vitC. Calcium. Curcumin. Probiotic.

[Greatday2 in reply to hurricaneheather]

thank you

[NPmary]

I was so scared when I started treatment (same as yours) thought I was going to die in 6 months. Eventually I realized my doctor was not at all worried like me, she was hopeful and she was right. The drug combo resolved a pericardial effusion, a pleural effusion, many nodules, bone mets was stabilized. Continued this treatment for 5 years. Bone mets progression 7/22. On faslodex since then.It's all hard, it can be funny too when you talk out the feelings and fears wi T h someone u ou love. No one can tell you what self care will work best for you - so do whatever worked for you in the past and add to your self care toolbox whatever - try it, keep it, go back to it, discard it. But something will work.

I trust you will find strength you didn't know you had, you will find peace and comfort and love you didn't know were there. 🌺 Mary

[Saltandlight]

I was on Ibrance and Letrozole for 5 1/2 years with little side effects. Sure do wish I could have stayed on that regiment because it was so easy but after progression to other bones have been moved to Fulvestrant. I pray you have a long successful run!

[Susan1953]

I have been on Ibrance 125mg and letrozole since April 2017. I was diagnosed de novo with bone Mets. My side effects have been minimal (thinning hair and arthritis in my hands). I am 70 years old and was diagnosed at 64.

[Totheriver]

I have been on ibrance and letrozole for 41/2 years. I started at 125 but could not tolerate it so now am on 75 and am doing well. My scans have all been stable.I have Mets in my spine and my femur . Hope things go well for you too.💕

[Danie-in-Montreal]

I've been on Ibrance + Letrozole for just over 5 years. Very manageable side effects, such as occasional fatigue. I started at 125mg, then quickly changed to 100mg. I also take 2 weeks off instead of one. I make sure my white blood cell count is good before I start again. Presently NED. I'm a healthy vegan, and walk daily.

[Ski2sea]

I’ve been on Ibrance + Letrozole + Zolodex for 4-1/2 years. I was diagnosed stage 4 to the lungs. I had chemo AC/taxol and then put on this treatment.

[Greatday2]

Thank you, everyone, for your responses!