Faslodex/Fulvestrant

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Hi everyone, Some time ago I asked if anyone had experience of Faslodex injections but got no replies. I found that kind of strange because I was under the impression that Faslodex was a standard treatment after Letrozole had not worked. Can anyone share their experiences with me? My story starts with breast cancer diagnosis Er+ Pr- HER2 Low in 2019 followed by chemo, lumpectomy, radiotherapy and 3 years of Letrozole. Recurrence in lymph node on chest wall, removal and radiotherapy again this year. I have been receiving Faslodex injections every 4 weeks since June. My physical checks have been fine, i.e. no further spread. However, I am having trouble coming to terms with this treatment for life or at least until it stops working. To me that sounds like it is expected to stop working at some point. It is like a dark cloud hanging over me. I wish I could flick a switch and think positive. I hear that so often. 

It would be nice to hear some comments. 

Ulla xx

  • Hello Ulla I’ve just noticed your post. My story is different I was first diagnosed with breast cancer in 2002 I was 42. I had lumpectomy followed by 12 rounds of chemo then a month on radiotherapy followed by  Tamoxifen for 5 yrs.  Happy days for 11 years, but unfortunately it returned 11 yrs later in lymph nodes in my arm pit. More surgery followed by Fec T chemo for 6 cycles and more radio therapy and then Letrozole. 6 yrs clear but then in 2019 it returned it spread to Liver lungs and spine. I can’t begin to tell you how devastated I was!! So now I’m metastatic went on to have 12 rounds of more chemo which unfortunately didn’t work. Thank god I’ve an amazing oncologist and she put me on faslotex injections and I took pablico tablets every day for 3 weeks one week off then start again. It wasn’t pleasant having injections so often but my results were amazing! Tumours reduced markers went down and I had NO side effects. Unfortunately after 3 amazing years it stopped working I was gutted yet again. So I’m back on chemo and won’t know until next year if it’s working or not. It’s the waiting that gets to me. I’m sure you’ll be ok stay strong and positive hope your journey goes to plan sending a big hug take care Karen xx

  • Thank you Karen. Your reply gives me hope and courage. I agree the waiting is horrendous. I hope your treatment works for you. Sending you hugs and best wishes. Ulla.

  • Hi Ulla,

    My wife is on the Fulvestrant injections, and also Alpelisib tablets as she has a PIK3CA mutation. She's doing well on this regime, with hardly any side effects.

    There's a new drug called Elacestrant which does that same thing as Fulvestrant, but is a tablet, and appears to be slightly better, and also works if you have the ESR1 mutation. (https://www.annalsofoncology.org/article/S0923-7534(22)02110-X/fulltext)

    As her treatment is working, we don't want to "upset the apple cart", but at least there's another targeted treatment to try if Fulvestrant fails.

    Cheers,

    Andy

  • Hi Boobycancer, many thanks for your reply. It helps so much to know that I' m not alone. I will make  inquiries about the tablet form. That sounds less restrictive than the injections. I wish you and your wife all the best. 

    Hugs, xx

    1. Thanks for asking this question. My cancer story is different but been cancer free for 8 years then re- currence May 2023. I am on  this treatment too. So far it seems to be going well but I have same feelings about where I am as you do Ulla. It’s taken me a while to come back onto the online community  I feel really well and can’t believe it is happening to me. I am 66.All the very best to everyone who is part of this community Maggie x
  • Thanks for sharing your story……. It has already made me feel more hopeful. All the love and hugs to you x

  • Hi Maggie, Your recurrence must have been such a blow after 8 years. I think it's harder to cope with than the first diagnosis. But, same as you,  I feel fine. I had my injections yesterday and my blood test was "perfect".  So everything is going well. That's what I try to convince myself of and right now it is working. At least I am keeping the beast at bay. Best wishes, keep feeling fine and never lose hope. Hugs from Ulla xx

  • Thank you , it is harder second time. It spread to my bowel and for several months they thought it was my appendix as that had indeed burst. When the biopsies said Cancer it was a real shock. At first I thought I couldn’t do it again but I found the strength and I know I can and am! I am on my tenth set of injections and tablets next Tuesday. It’s working I feel well and my results show positive changes. However I keep feeling the dark cloud at times and wobble about how long I will be here. Having said that your message had had the desired effect and in this moment I have my positive head back on. Thank you and keep doing what you are doing and I will do the same . At this moment I am determined to be in this world a long time. Love and hugs to you x

  • Hi Ulla, I got diagnosed with SBC in Oct 2023, after 10yrs from primary diagnosis. I am now on the Fulvestrant injections and Ribociclib tablets. I am due a scan mid February to see how things are going. I feel I am doing ok on the treatment regime, and as others say, I almost forget my diagnosis. But I do worry about every pain or twinge that I get. I keep reminding myself that there are more treatment options if this isn’t working, but it’s a big psychological battle for us all. Try to stay positive, sending you a virtual hug.

  • Hi, First of all I love your alias. Made me laugh. Best of therapy! Glad you're coping and keeping a positive outlook. I'm still chugging along too. Hugs, Ulla