Palbociclib with letrozole combo

Living with secondary breast cancer Treatments and medical issues
1

Hi ladies

has anyone had success with the palbo / letrozole combo longer than 3 years ?

thanks x

2

Hi diweb,

Thank you for your post.

I am sorry you haven’t had any response yet. I am hoping my response will help our members to see your post and share their experience.

Sending you our best wishes,

Zoe

3

I am starting this shortly. On letrozole now. Oncologist told me he has another woman same diagnosis as me, secondary breast cancer spread to spine. She is in 3rd year now

4

I am just 3 years in and scans stable there are several on here been on it longer and I was told as long as its keeping things stable I will stay on it . Liz x

5

I’ve been on this combo for 3-1/2 years since about Feb. 2018.  Started Ibrance at 125mg, reduced to 100 then 75.  Have been stable with no spread for over 2 years on 75mg. 

6

I’ve recently come off Palbo as my quality of life was naff. Letrozole is keeping my lung mets stable. On the combo since October 2017 until last month. Best wishes. Ann x

7

Hello diweb,  I’ve have sbc in two vertebrae.  I’ve been on Palbociclib and Letrozole for just over 4 years.  I started on the 125 mg dose but now take 100 mg.  I have scans every 4 months and the last one thankfully showed no disease progression.  I’m hoping that will continue for a good time!
Its not easy, I find I get extremely tired and the meds make me breathless when walking.  I get some joint pain and take paracetamol to help.  But at the end if the day I’m still here which I never expected to happen when I was first diagnosed.  I’m so grateful I’ve been around to see my second grand child born.

Good luck with your treatment.  You can do this! 

8

Hi I realise that this does not answer your question but I am now in my fourth month of the same treatment.  I never see anyone and only receive a five minute phone call once per month- if I am lucky - last month I had no phone call and no prescription ready for me either.  I wonder if you have had the same lonely experience for however long you have been on this treatment.  I realise that the Oncology departments are overstretched but must admit I might as well be on Mars.

9

Tehere is a ribociclib/kisqali group on Facebook. I advise it. There a lot people who has successful treatment

10

Yes.  I have been on Palbociclib with Letrozole for the last 4 years and 5 months and my secondary breast cancer wide spread in my spine, ribs, and upper leg is still stable.  I understand that I am very lucky that it has continued to work for this long.

I am now having to have blood transfusion, possibly as a side effect, possibly because the cancer has become more ‘active’ but still stable.  The other side effect have been very manageable, low bloods, fatigue, occasional mouth ulcers, and watery eyes.