Hm, Where to start?! Well, I could do so I suppose by telling that my wife - who is 12 years younger than me and always the stringest one in the family - went into hospital the week leading up to Christmas 2016 with a bad back and came out with stage 4 breast cancer! I hope this true brief sentence encapsulates the trauma, the shock, of the whole experience! The immediate months afterwards were equally traumatic - as many of you probably know only too well, I expect. My wife got some radiotherapy and spent 2-3 months pretty much confined to bed or using a wheelchair...Eventually things settled down - and in essence my wife has been stable/was stable till her bone scan just before xmas [again] 2019 - I'm strongly beginning to dislike xmas! - which showed that her cancer has begun to spread again. In the period in between she has been on tamoxifen, has bisphosphate drips, and even has had 4 operations on her spine [as well as a radical hysterectomy] - much of this due to a very good doctor that we found in another city. The doctor in the city where we live...could be better. For instance, his response to the latest spread was simply to continue the present medication! For this reason, we went back to the doctor we had found in the other city - and he suggested my wife should have Fulvestrant with pacocyklib or rycociclib [I may have the spelling wrong here! These are new medicines for me to get to know yet]. As I suspected, the doctor in our city, however, refused this medication...BUT what I wasn't expecting was the reasons why - which is to do with regulations. [I may as well say at this point I am an ex-pat living in Poland...but hope I can get some support here - difficult to find English speaking support here in Poland, although I have tried]....Anyway, to cut a long, complicated story short - we have now persuaded the doctor in our city/found a way around the regulations to get new medication: which is etruzil [letrozole] with the pacocyklib. BUT what I'd really like to know is whether letrozole and fulvestrant are the same thing/much the same thing or not? I am still suspicious about the doctor in my city.
Hi and a warm welcome to the online community
I'm very sorry to hear that you've recently discovered that your wife's breast cancer has spread further it must be a very difficult time for you both.
I can't answer your questions but I can point you in the direction of the secondary breast cancer group where you can ask questions, share experiences and get support from others who will understand what you and your wife are going through.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
x
Morning
So sorry to read about your wife and seeing you joining us here :-/
Please use the link to the secondary breast group and join as mentioned by latchbrook above as there may be others on similar medication. I will put in info links to those you mention so you can check them out for side effects and treatment info
Etruzil is what Letrozole is called in most of the Eastern European countries, Fulvestrant / Faslodex is injected in the buttocks while Etruzil / Letrozole are daily tablets. Fulvestrant is usually given if Letrozole isn't working as well as expected but it works in a different way and is a lot more expensive - There is a comparison page you could look at clicking here. They do the same job but the Fulvestrant has a slightly better prognosis.
Also expensive are the two newer biological targeted therapies you mention Ribociclib / Kisqali and Palbociclib / Ibrance. Several of the ladies in the secondary breast group are having either of these so you may get further experienced info about having these by asking in that group.
Hope this is of some help for now, will keep a look out for you in the secondary breast group.
Take care, G n' J
Dear Dreamthief,
Thank you very much for the info you provided - especially the links [especially the comparison].
I'm still left wondering [or perhaps even more so now!] whether etruzil/letrozole is a good follow up - with palbociclib - to the failure of tamoxifen? The specialist we saw in Krakow recommended fulwestrant with palbociclib - and I get the impression that it is due to financial reasons that etruzil is being given [although the latter drug is expensive] by the doctor in our own city.
I shall be joining the secondary breast group.
Thanks once again
Charley Farley
Hi
It may not be that the Tamoxifen has stopped working as such - If you wife has had chemotherapy or been on Tamoxifen for quite a while she may have been placed into the menopause from the lack of oestrogen produced in her ovaries.
Tamoxifen stops the ovaries from producing oestrogen but when the ovaries shut down during the menopause one of the Aromatase Inhibitors like Letrozole / Anastrozole is given to replace the Tamoxifen.
Reason being is that post menopause nearly all oestrogen is produced by body tissue cells and the adrenal glands the AI's block the androgens from being turned into oestrogen - so perhaps this is why it was changed. They do the same job but work differently on other areas of the body.
Basically in most but not all cases; Pre menopause = Tamoxifen but Post menopause = AI's
Take care, G n' J
Hi Dreamthief,
It's a bit of a long and complicated story really, but...in brief?!...My wife went down ill in 2016 [she went into hospital with a bad back, which doctors hadn't been able to find the cause of, the week leading up to x'mas, and was diagnosed with stage 4 breast cancer...very traumatic, as you can imagine]. The early months of 2017 she was given radiotherapy and was very ill [bedbound virtually or using a wheelchair], but stabilised - and after seeing a specialist, privately, in a different city - through 2017 had 4 operations on her spine AND was given a radical hysterectomy and put on tamoxifen and bisphosphates...which worked till her bone scan showed the cancer was spreading in the week leading up to xmas 2019 [why does it always have to be x'mas!]...Her doctor in the city where we live said just to continue with the tamoxifen etc...so we went back to the specialist in the other city, privately again. He recommended fulvestrant with pablociclib or ribociclib, but on returning to the doctor in our city was told by that doctor that this was not possible [due to regulations...we live in Poland]...But eventually, following a new bone scan and tomography, he relented and put my wife into a special program. Great, except the medication she is being given is etruzil and ribociclib...and I had/have suspicions about whether this is the right medication? I see that letrozole and fulvestrant operate in different ways...as well as fulvestrant seems to be a superior drug?...I'm also worried from what I read whether a letrozole drug is good after tamoxifen? I am 12 years older than my wife by the way [and not very computer savvy - so I wrote these details before, but not sure if they were visible - probably not] and have had no help here in this country - difficult to find. [I sometimes think I am suffering from a form of ptsd!]. But on the positive front...my wife is oestrogen positive, HER2 negative and has a low Ki67 score - so the cancer's progression is slow. The doctor in Krakow [the other city] even mentioned he had similar patients who were still alive and well after 25 years...If needs be, I have thought about returning to Britain - although that would be difficult as I have been an expat for 25 years...but if it meant my wife could get the fulvestrant, I'd consider it. But maybe the current treatment is good enough - etruzil with the ribociclib? Doctors over here are not very communicative...Maybe, as it seems very technical really, it is difficult to know?
Whatever, I would like to thank you - and wish you well in your own case...
Charley Farley
p.s. Sorry - this is a bit long - and rambles a bit!
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