i was diagnosed at the end of August straight to stage 4 with bone mets. I have had my L3 vertabrae removed and replaced with a cage and rods put in above and below. I have also had a mastectomy which I think is unusual??
They started me on zolodex and letrozole after the spine ops.
Oncologist is now planning radiotherapy to the spine and the chest/armpit (same as they do after a “normal” mastectomy).
He has said that it is basically now my decision if I stay on just the letrozole or if I have Ibrance (well he said a CDK inhibitor which I think is Ibrance??) now or wait for progression?
He seemed to be leaning towards waiting but I can’t see why that would be the best thing to do. They have been very aggressive thus far. He said it improves progression free time but not necessarily how long I may live!!
Have others been faced with this decision? I have limited side effects on the letrozole so it is tempting to just be myself but if the Ibrance delays things then why not??
i have never heard of Ibrance, but for me I would throw everything at it to slow down progression. Others who have had it may say differently, and I am new at this secondaries thing having only been diagnosed 2 weeks ago and not having got going on any treatment yet.
Maybe you could find out more about what the side effect might be before making a decision?
Hi Rara, you’ve had a bit of a rough time I think. Tough not being given the full picture which would help you make an informed choice. I was diagnosed in 2017 with 4 small lung mets. I was put onto Letrozole because…well, that’s the drug of choice for Er+, but I was told that often it only has a working life of 2 years. The cancer is very clever and will think of ways to get round the block, so it mutates. Palbociclib works with the Letrozole to extend that. So far I’m doing very well on it. I didn’t do well at first as my neutrophils kept crashing. I’m on a small dose with a longer rest period. I chose to take these drugs as I want to be around my husband for as long as possible, and of course my children and grandchildren. If the SEs mean my life is no longer enjoyable then I shall stop. Not yet though! ?Wishing you the very best. Whatever you decide has to be right for you. X
I agree, having a mastectomy when you well diagnosed straight to stage 4 isn’t something you hear about! Regarding Ibrance, have you looked on the US site Inspire? There’s a lot more information about it on there as it’s been used for much longer than here in the UK.
If you have been offered ibrance to add to the benefits of Letrozole I’d take it as it is a new drug not offered to all ladies with secondaries. I’d also say that in my experience (I’ve had mets for over 11 years now) that the longer you can keep off chemo for treatment the easier it is to lead a ‘normal’ life (whatever that is!). It enhances the Letrozole and, as you’ve said, prolongs progression free time. I don’t know of all the side effects of Ibrance so hopefully someone else will come along and help with those, or check out another thread on it, I expect there’s one in the Treatments and medical Issues part. The Ibrance can always be taken off if you don’t tolerate the SEs.
I am at the stage I am just too angry that it has taken them 4 years to diagnose me however I have accepted it. I will start it in the new year I did not want to be sick at Christmas I want them to repeat biopsy and do the per scan first.