I've had 9 rounds of fulvestrant and ibrance but because my husband has been redundant I've lost my private health care and have to go back into the NHS. Under their rules I have to swap to letrozol and ibrance, though my new oncologist has told me that he can prescribe fulvestrant when letrozole stops working or if I have an adverse reaction. I can also pay for the fulvestrant by private prescription and would be around £600 a month.
My previous oncologist was adamant that the fulvestrant/ibrance combination would be the most effective treatment for me and I've had 2 good scan results while taking it. I'd really like to hear if any one else has swapped to fulvestrant after letrozole and if it was a successful transfer. I know that statistically letrozole doesn't work as long as fulvestrant and I'm worried about switching.
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Julie2233
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How did you know it failed? Were you symptomatic? I just switched to letrozole a week ago because of the anxiety and discomfort of the fulvestrant. I still feel the last round of injections were somehow given incorrectly but will never be able to prove it.
Part of knowing it failed was a gut feeling. But the fill-in onco at my 90 day follow up said “let’s do the scan closer to 6 months”. 3 weeks after my appt I felt rib pain and called requesting to move up. The dr moved it up.
The spot I had pain was clear. But I did have 10 micro spots in my liver. Too small to biopsy at the time.
I just started fulvestrant...second round of shots were Tuesday. Mostly uneventful so far. But I think my urine smells like burnt or something. I noticed that last time for a few days too.
Ok thank you. I didn't have any issues with fulvestrant other that injection pain and injection sight pain for a few days. It was somewhat manageable except for the last round. I had 6 rounds total. I wish you the very best and hope the fulvestrant works well for you...
I asked because Zim wondering if j should ask if we can do Ct scan next instead of the PET. It would be good to understand better our doctor's scan choices! I asked mine but her answer didn't really help me.
Honestly, I was always under the impression that PETs gave much better detail and info. However, they run 2-3 times the price of CT. I would love an annual PET.
I didn't realize that as I'm mostly covered by insurance copays for scans. I think now the PET shows the activity level of sites better but CT shows more accurate tumor size. I have a couple in particular I'm more concerned about and worry if they got bigger or not. I guess my next scans will tell a clearer overall picture of how drugs are working. Keeping my fingers crossed for this ibrance combination!
I was told by a breast specialist that a Ct scan will pick up smaller lesions. I had a PET scan that showed no activity and in less than a month my Ct scan showed small lesions in my liver
Hi Julie,
Hmmm...well, my knowledge on this is certainly limited, but I'll tell you that my assumption is that Letrezole + Ibrance is better than Faslodex + Ibrance, in terms of efficacy. This is based on the fact that Letrezole + Ibrance is (was?...was 4 years ago when I started...) the FIRST thing they try with er/pr + MBC. My understanding is that they start with the best option, then move on to the next best, and so on. When Ibrance was in clinical trials, it was tested in combination with Letrezole, not Faslodex. I assume there was a good reason for this?
You'd be switching, but still on your first line treatment, which is a good place to be. If I were in your position, I honestly would view the change as neutral....do you do "A" then "B" or "B" then "A"? You can go back to the letrezole later and get the full milage out of that one, too....
I found this study from the NCBI/NIH (link below) that seems to say that they're close, but Letrezole might be a bit better as a first treatment ("endocrine naive"), but does have a higher rate of discontinuation due to problems. Maybe this is what your previous doc was referring to, i.e. fewer side-effects?
I was on Letrezole + Ibrance for 40 months and had no problems at all (okay, a little pain (easy enough to ignore), fatigue, low neutrophils...but certainly nothing that would make me want to discontinue). I do feel better on Faslodex but hung on to Letrezole as long as possible...
Apologies Lynn, I've just realised that my response to you from a few weeks ago isn't here! I think I keep forgetting to click the reply tab to post the reply after I've written it! It's happened a few times!
Julie, I certainly don't disagree with LynnFish! My experience with these meds started way before Ibrance was around and I got nearly five years with Letrozole, my first line of treatment after original diagnosis when I already had mets. Then I got over 9 years on fulvestrant. Back in 2004 when I started this mbc journey, we did not hear of women being prescribed fulvestrant before an AI like Letrozole (Femara), Arimidex or Aromasin. The women I met in a local mbc support group who had an E + cancer all had very positive experiences with fulvestrant after an AI and alot of us found that easier to be on. Even getting an injection every month was kinda nice as it spared us from the daily pill and reminder of the cancer. You can ask your onc, but I suspect that in the long run, which of the two drugs you take first is probably not going to matter much! Have either you or your onc talked with any of the people making the insurance decision? Sometimes that can help, at least that's been my experience here in the US with insurance. Good luck to you and keep us posted.
It's been a very unsettling time with my husband losing his job, changing hospital, oncologist and treatment, all at the same time.
The private care finished with his employment and there was no room for manoeuvre from either his former company (a major international company who he's worked for for 27 yrs) or the company providing the cover, I had a month's notice. From my original diagnosis in 2016 I resisted using the private insurance but was driven to it back in march when my NHS oncologist started her maternity leave immediately after she gave me my mets diagnosis, she left me not knowing who would be treating me or when or what I would be offered. As I was receiving my diagnosis I could hear her leaving party going on in the staff office next door! They were really enjoying themselves! It felt very surreal. Party music as you are facing your mortality! Sorry for the rant!
I've been really well on the ibrance/fulvestrant combination and felt quite worried about changing, but I feel far more reassured now, thank you.
Sorry, just having a moan. I'm not a sensitive flower but since the start of my treatment I seem to have experienced a catalogue of incompetence and insensitivity which would be too far fetched for your average soap opera
Julie try asking the new onc for the nitty gritty details of how each drug specifically works to help attack the cancer. Perhaps there was a reason , something in the details of your cancer dx, that the first onc thought the fulvestrant was better for you? Getting that info may help you understand it all better. The others above give great advice so try not to stress about it. Just keep in mind going forward that the "how" the drug works is more relevant than the statistics of the general response. What snow cone points out is true about what used to be the general first drug offering. I find it interesting reading posts in this group of how the drug protocols are changing with the years since I started this journey back in 2005
Thanks lynn, I am feeling more positive than I was.
When my oncologist put me on to the faslodex last year he told me that the recent clinical trials were showing that the faslodex and ibrance was the better option. My new consultant was quite ambivalent and just said it couldn't be prescribed together as a first option.
I think I was most worried about changing because I've always had one of those bodies which reacts quite badly to medication. I had a year on tamoxifen and it was really horrible, I had every side effect in the book. With the ibrance faslodex combination I have had far fewer side effects and felt more like myself again. Please don't think I'm a delicate flower or against medication (or some foods for that matter) because I'm not and it's very frustrating.
Having found a combination that worked I was worried about changing and I've also had a stressful couple of months. I think what I've been experiencing are side effects compounded by life events, and I'm just hoping they will subside as I get used to the new drugs. 🙂
I am on Fulvestrant and Ibrance with Xgeva every 3 months. Working well. In terms of $...ask if you can apply for aid from the drug company. Hang in there.....
Can you argue the unnecessary change in treatment that you have already been on? NHS will see that as second line treatment. I only took letrozole for 3 months after tamoxifen, but had progression. I am not allowed a CDK4/6 inhibitor now, due to NHS and NICE guidelines!
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Fulvestrant injections 
Verzenio and Letrozole 3rd line
Letrozole
Scan results after 11 months of Fulvestrant and Ibrance-75
