Fulvestrant and Denosumab

[Ssm2019]

Fulvestrant! Does anyone take this with Denosumab? Would be greatful to know how it has worked for other people?

My mum has been down hill from April since we found out tumors had grown with a year on palbociclib and letrozole they switched her to tamoxifen during lockdown and further scans showed progression again this time new mets to liver and stomach! (Only bone mets before) this led to my mum being left in a wheelchair and immobile, they switched her then to fulvestrant she was given all kinds of pain killers in an out of hospital with infections and was so confused with all the drugs she was on for pain (Oxycodone, ketamine, anti depressants, diazepam, lorazepam) to the point she was sleeping all day and night straight! They told me she had months! This broke my heart! I done the research and started her on cbd and Fenbendazole the same time she started fulvestrant and 2 weeks on she was in a lot less pain so I looked up the side effects of the pain killers OMG she had every side effect I told her to stop the diazepam she did 3 days later we have my mum back she no longer sleeps the whole day and is not in pain we have also reduced the ketamine to twice a day not 3 and lowered the dose also lowered the Oxycodone dose and is coming off the anti depressants (amytriptoline) this week, she has been in no pain for the past 2 weeks (4 weeks in on fulvestrant,cbd an Fenben) i am wondering what this can be is it a mix of them all are the tumors reducing to cause less pain? I would love to know we are so happy we have my mum back with us mentally but the way things were a few weeks back to now I am amazed!

Thanks Faye

[Hidden]

Faye -

You're such a gem of a daughter, looking out for your Mom so well!

I don't know the answer to your question, I hope someone who does will respond, but I just wanted to say that I'm so happy that your Mom is feeling so much better!

BTW, do her docs know about the fenben? I'm just wondering if there are any concerns about her taking that "off label"?

My best to you both!

Lynn

[4thTimesTheCharm]

Faye - The combination of Faslodex (Fluvestrant), Xgeva (Denosumab) and IBRANCE kept me going for nearly 20 months after mets to bones was discovered. Once progression to liver and lungs showed up we switched, and are still trying to get a good fit for the next chemo. (My body also rejects types that seem simple/agreeable to others.)

Xgeva (Denosumab) is a bone builder, and responsible - it seems - for the healing of many pelvic and rib fractures I experienced. The shots are IM (usually upper arm) and not a problem for me at all.

I hope for your mother it is the same.

Thank you for taking such good care of your mom. I know it's a lot to do. All the best, Kathleen

[Hidden in reply to 4thTimesTheCharm]

Ah! 4thTimesTheCharm, thank you so much for clarifying re: the Denosumab!

Faye, I actually might be able to give you some insight to your Mom's treatment...I've been on faslodex, in combination with Ibrance, for two years. But, I don't know that the Ibrance is actually making much of a difference since I "failed" (well, "I" didn't fail...) on Ibrance + Letrozole before...So let's set that aside that for now.

The Faslodex has been a wonderful treatment. Very easy to tolerate, although the injections are no fun, of course; hurt a bit, but NBD. While I cannot claim to have had some great response, e.g. it's not as though everything (or anything...) "went away", but it has held things at bay for two years now...Which, in my view, is the primary goal.

I wish your Mom great success with it...I know some women see marked improvement on this drug...I hope the same for your Mom...

Take care,

Lynn

[Ssm2019 in reply to Hidden]

Thanks Lynn, I’m so happy you have had great results from the Faslodex! My mum has taken Denosumab since day 1 of diagnosis and copes well with the shots! And has had no side effects really from the fulvestrant shots, I am wondering if my mums have shrunk any as 4 weeks ago she was in a hospice having pain management as nothing would take the pain away even they said there is nothing else (pain wise) we can do for you! And she was crying out in pain everyday! Now nothing little twitches now an then and we knew she had nerve damage from last radiotherapy to the spine which was controlled for a while with the pain killers until it got unbearable! What ever is working I’m glad it is and hopefully will for much longer! She said she hopes she sees Xmas this year I think she will see next Xmas too! X

[Ssm2019 in reply to Ssm2019]

Positive thinking goes a long way!

[Rhwright12]

Good for u! Taking the bull by the horns and trying something! Anything...mom was a mess and u solved it for now 😀💕...Fenben and CBD both fight cancer. Every tumor is different and responds differently. U never know what will work and the doctors were done is what I’m hearing...They turned her over to hospice...U go girl!...Love hearing stories like this ❤️ Glad to hear mom is on the right track and is looking more like years than months! 🙏🏻💕

[Ssm2019]

thanks for your reply I’m so glad I done it cause I am one for natural/off label remedies I believe they work! want her with me as long as possible and will do research and whatever I can to help! I will not stop trying! 🤞❤️

[BangorBelle56]

I think it might be good for your mum to have chemo, Taxol perhaps? Iam having a break at the moment with scans this week. Two glorious months of feeling normal.

I am on Fulvestrant and denosumab, at the moment however to really shrink the tumours I always have to go back to chemo. Sometimes you need the big guns for several months and then a ‘rest’ with Fulvestrant and Denosumab. Please try the chemo I find growth back when I go off it but feel it is worth going back to get max shrinkage. Love to you and your mum xx

[Ssm2019]

This is great the chemo is working for you and are able to switch from one to have a break! The last appointment the doc said my mum wasn’t well enough for chemo ( she didn’t look well) but now she seems totally different so maybe worth an ask the next time we go see her oncologist. Thanks for your help regarding other options, hope it continues for a long time for you x

[swim-mom]

I have been on Faslodex (Fluvestrant), Xgeva (Denosumab) and IBRANCE for 15 months now and I have been doing well.