New to Ibrance : Hi, I'm new to this... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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New to Ibrance

Gino21 profile image
26 Replies

Hi, I'm new to this site. Just started Ibrance and Letrozole. On my second week now. Get my first blood test and EKG on Monday. Hope my numbers are good. No real side affects yet. I bit of constipation which I'm trying to manage with diet.

I had breast cancer 20yrs ago but went into remission, thought I had it beaten. September of 2019 it came back with a vengeance. It came back in stage 4 breast cancer stemming from the original breast cancer 20yrs ago.

Did 7 months of IV chemo at hospital. Dr. thought I was a good candidate for Ibrance.

I am glad I found this site. It's nice to hear from others going through the same thing.

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Gino21
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26 Replies

Gino21,

Welcome to the site...I think you'll find great support, knowledge, and wisdom here!

I'm sorry about the diagnosis and I don't envy you going through all that chemo recently, but I'll mention that, from my perspective, Ibrance + Letrozole was a very easy -- and effective -- treatment for me. Fatigue and low blood counts were my only issues, and I remained on it for almost four years.

Wishing you the best with it...and, again, welcome to the community!

Lynn

Fighteragain18 profile image
Fighteragain18 in reply to

Four year’s that’s brill

Give us all hope

Can I ask what you’re on now that’s still working x

in reply to Fighteragain18

Hello! I'm currently on Faslodex + Ibrance, going on two years. Thanks!

Sunny2020 profile image
Sunny2020 in reply to

After the Letrozole and Ibrance stop working they just switch the Letrozole to something else and keep you in Ibrance??

in reply to Sunny2020

That's what they did for me.

At the time, this was not standard practice but my oncologist made an exception because I had asked for it and I sort of "made my case" to her (longish story) so, to get it through the system, she coded the change as due to side-effects, not progression, indicating that I was still on my first-line treatment when really it was/is second line...

I had thought that this was standard protocol now, but have read mixed things here on this site, so I'm not sure...Might vary by country? Type of insurance?

Best,

Lynn

Annadm profile image
Annadm in reply to

Hi Lynn, did you stop both completely after 4 years? And why? Thanks 😊

Teddielottie profile image
Teddielottie

Hello! Just wanted to wish you well as you start on your Ibrance /Letrozole treatment ! I have been fortunate to have tolerated it well(currently on my 34th cycle). Make sure you drink lots of water and try to keep active .Plenty of advice on here if you do get any of the side effects ! And do ask if there’s anything you wish to know from ladies who have experienced it . Take care ! x

Gino21 profile image
Gino21 in reply to Teddielottie

Thank you for your well wishes. Hope you continue doing well.

Hi there and welcome.

I’m sure you will find Ibrance an easy med to take. It will certainly be a breeze compared to 7 months of chemo!!

I have been on it for 14 months now. I’ve continued working and enjoying the things I love throughout this time.

It must have been difficult finding out your diagnosis after such a long time. My gap was 13 years and it took me a good few months to get my head around it all.

We are always here if you need support

Clare x

Gino21 profile image
Gino21 in reply to

Thanks for touching bases with me. Any tips for constipation?

Maludagui profile image
Maludagui in reply to Gino21

Hi 👋 send you ❤️. I am on ibrance - letrozole - xgeva - Zoladex for 22 cycles. I had consripation all time. But at this moment I am good. I eat papaya a lot , oatmeal a lot , and Miralax with a lot the water and this working

Plenty of water and dried apricots or prune juice.

I hate constipation, very uncomfortable.

Clare x

hdhonda profile image
hdhonda

Welcome Gino,

You have come to the right place. We have all been blindsided by stage 4 too. Come often. You are one of us. Blessings Hannah

Fighteragain18 profile image
Fighteragain18

Welcome

Mine came back after 10 years same cancer into the pleural lining of my lung

But I’m sure it came back from the lump I didn’t notice in my mastectomy recon go figure

I’ve been on it now for nearly 2 years all good and latest scan showed no evidence of disease

Beryl71 profile image
Beryl71

Nice to meet you. I had breast cancer 26 years ago and was told I was cured. It was diagnosed this Spring at stage 4 in bones and lungs, almost by chance, when an enlarged lymph node pushed through chest wall. No idea how long its been there. Although I had had sciatica and back pain for some time.

On looking back after a few years I had no checks other than the mammogram, but of course it had metastasized elsewhere.

I was put on Ibrance and letrozole straight away and now have had three months with monthly blood tests. It's taking my cancer markers down and I feel so much better than I have for probably a year or more. I've had no side effects. Was told to drink plenty of water, and I eat a mainly whole food diet. Good luck, hope it works for you. As far as I'm concerned it's been like a miracle so far! I pacify myself with the fact that it kicked me into touch the first time and I've filled those years with many good things! No regrets....

Totheriver profile image
Totheriver

Welcome to the site!! It is a great place......I to had breast cancer 18 years ago and came back with 12 tumours in my spine. Had 5 radiation treatments and have been on ibrance and letrozole for a year. So far everything remained stable....hope your tests go well.

Theresa

Biddy007 profile image
Biddy007

Welcome. I hope the chemo works for you. Keep us updated. Xxxx

AvidBooklover profile image
AvidBooklover

Welcome...great group here!

Seven years later mine was back with one spot on my hip in 2019. Of course, since they never scanned me in 2012 who knows how long it has been there! On Ibrance 100 down from 125 and Faslodex shots once a month and Xgeva now every three months.

Lots of water is key...and I sub plain seltzer for water most days and squeeze lemon or lime in it!

mariootsi profile image
mariootsi

Welcome! Happy you found us! There are supportive, wonderful women here ready to listen! I wish you well with your treatment.

Glad you have not had side effects. Good luck with bloodwork on Monday!

Aquadog profile image
Aquadog

Welcome! Wow - that must have been a shock to receive that diagnosis after 20 years! I had gone 8 years and thought I was cancer free, but not. Anyway, I've been on Ibrance and letrozole since February 2017 and doing very well (NED since 2018). These drugs have been easy for me to tolerate. I do have muscular pain in my legs, but exercise regularly and do stretching which seems to help.

So glad to have you here. This is a great group - lots of knowledge and support.

Let us know how the blood work goes Monday

Take care

Susan

SeattleMom profile image
SeattleMom

Hi Gino!

Your story is similar to mine. I was diagnosed with BC in 2000 and elected to have a double mastectomy despite Stage I status. 17 years later I was blindsided by MBC in spine and one pelvic bone.

I have been on Ibrance/Letrozole combo since November 2017, so now 33 cycles. The fatigue was much more difficult in early months and seems much less an issue now. If your mets are primarily in bones, be sure to add daily Vitamin D.

God bless you! Lots of wonderful “sisters” in this community!

Love, Linda

🙏🏻🙏🏻💗💗

Kdiet profile image
Kdiet

Hi. I had almost the exact same experience. My cancer came back in the sternum. I was shocked. On Ibrance and Letrozole. They get easier to tolerate as you go along. Good luck. Lots of help from the ladies on this site. It will work out. Xx

Sunny2020 profile image
Sunny2020

I’m on my first line treatment of Letrozole and Ibrance and was just under impression it was the Ibrance that stopped working as I hear people say that. But Has It kept you stable?

Bexly profile image
Bexly in reply to Sunny2020

I've been Ibrance/Letrozole for two years after mets to my bones. I have scans every 4 months and so far so good as for stability.

Annadm profile image
Annadm

Welcome to the group. This group is the only thing that helps me cope with my cancer recurrence.

I’ve been on Ibrance and Letrozole since December 2019 for Mets to lungs and liver. I have a few side effects but nothing really harsh except for maybe the joint and muscle pain.

The constipation is awful but Miralax every day works great.

Good luck and remember we’re all in this together and here for each other.

God bless

Annadm profile image
Annadm

Did the chemo help? I’m doing the opposite because Ibrance doesn’t seem to working.

As for constipation, I swear by LAX-A-DAY (in Canada). Miralax in the U.S

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