Affinitor and Faslodex aches and side effects! Wow! 😳

[Hotlantaphatz]

My bones 🦴 and muscles 💪🏽 are giving me some serious pain and discomfort under Affinitor and Faslodex! My labs came back a bit wacky! The fluctuations are disturbing but onc says to expect that ….. (still leaves you with concerns). But remember glass is half full 🥃 (wow wish I could have that it looks tasty) cause there is hope. Stay strong 💪🏽!

[PJBinMI]

Is the Faslodex still fairly new for you? I got over 9 years from it as second line treatment after almost five years on Letrozole. If I remember correctly, the first two or three treatments were the worst and after about that, it got much better. Then, 1 shot rather than 2, was standard, but when it increased to 2, my CA27-29 dropped into the normal range and stayed there for a few years, only time in my 18 2/3 years with MBC that TMs were normal. Also, I've been on Celebrex for post joint injury pain, and it probably helps me alot with bone/joint pain. I loved being on Faslodex and not having the daily "cancer pill!"

[Bettybuckets in reply to PJBinMI]

incredible story! I have taken celebrex once daily for years for aches and pains. It has been helpful.

[Hotlantaphatz in reply to PJBinMI]

thanks for sharing! Been on faslodex for one year. Just started the afinitor.

[Kelly001 in reply to PJBinMI]

me too. I have the aches & pains too. I have been on Tamoxifen (10 years). Started Ibrance & Falsodex in 2018. Stopped Ibrance due to new Liver lesions and did Y90. (Continued my Falsodex shots). My nurse gave me Tramadol & it’s not for me. I did try Piqray too. I can’t take. At this current time my TM’s are normal & last PET was good. I’m awaiting my next PET on 12-2-22.

Does Gabapentin help? I need relief. My pain is mostly when I start to get still and lay down. ☹️

[Shafight in reply to Kelly001]

can you explain more what you’ve taken. What did you do about liver lesions. What is Y90?

[Kelly001 in reply to Shafight]

Hi I was dx in May 2002 with Stage 1/BC. At that time I had Left Mastectomy +Tram Flap surgery. AC *4/IV Chemo. Returned 10-2008 (Stage 1/BC-same area Under left arm. ) At that time External Radation & Tamoxifen. I was on Tamoxifen for 10 years. BC Free so I thought. I had problems in 2018 & had to get Hysterectomy so the ugly (3) Liver lesions were seen on CT & Pet. The rest of test clean. Started Ibrance & Falsodex shots in 2018. TMs started increasing in November of 2019 and (3) new liver lesions seen on CT. My oncologist recommended I do Y90(internal liver beads) so I did 2022 and TM’s back to Normal so I’m currently only on Falsodex shots. Awaiting next PET 12/2/22. I did try Piqray (Chemo pill) unable to take. 🤮

The Y90 is interesting if you would like to google. I was offered bc my cancer is only in my liver at this time.

Kelly

Dx: May 2002

[PJBinMI in reply to Kelly001]

My grandmother had internal cobalt beads for endometrial cancce r in the 1950's when she was in her 70s, and she lived to be 102! Tough old farmer!

[Kelly001 in reply to PJBinMI]

wow! That’s awesome! Yes those ladies were tough! You have been dx with Stage 4 haven’t you? (Years ago). Speaking of Tough. I admire your strength. I am feeling my body breaking down.

Do you know if Gabapentin will help my aches & pains for ( I feel like it’s from being on the chemo pills for years & coming off but I know the Falsodex is what they usually say it’s from).

Any help is appreciated 😃

[Shafight in reply to Kelly001]

I know that feeling that your body is breaking down. We need t find a way to put it back together!!!

[Shafight in reply to Kelly001]

thanks. I had never heard of that.

[Hotlantaphatz in reply to Kelly001]

Thank you so much! I will research and discuss with onc! Stay strong!

[Kruza]

Girl, them joints and muscle aches and pains are the worst. I am on letrozole and boy is it kicking my behind. I was on prednisone which helped me a lot with that but it's own side effect was tremendous weight gain, so changed to duloxetine which worked for about two weeks taking the edge off but now not doing anything. Anyway, I see the onc. week after next to change it. Hang in there hope they can find something that helps you out because boy it is uncomfortable.

[Hotlantaphatz in reply to Kruza]

Hanging in and on! Thanks

[hdhonda]

Blessings and best wishes to you. Hannah

[valentinecalico]

Good luck to you!! I am starting Faslodex (no affinitor) next week. Fingers crossed for minimal side effects - will report back. Have a great weekend everyone. I'm going to try to get a walk in and do some gardening - peonies and bulbs to plant. ❤️

[Kelly001 in reply to valentinecalico]

Hi I’ve been on Falsodex shots since 2018. It hasn’t been to bad for me. I used to take Claritin before I would go because I would itch around the shot areas but I don’t anymore. I would walk afterwards and drink plenty of water. That seemed to help. Good luck! Hope this information helps.😃

[Hotlantaphatz in reply to Kelly001]

great advice! Thanks!

[Kelly001 in reply to Hotlantaphatz]

Your Welcome. Has the Afinitor gave you stomach issues? I’m curious bc this my be by next pill that my oncologist will try.

Thanks in advance.

[Hotlantaphatz in reply to Kelly001]

yep! Sore mouth, tummy issues, joint pain! Manage mouth irritation with Magic Mouthwash prescribed; tummy Banatrol Plus; muscle joint pain with Gabapentin and ibuprofen. Stay strong!

[Kelly001]

Thanks for your reply. I’m sorry your having to go through this. It sounds better than the Piqray for me. I can handle mouth sores, joint pain bc I have that everyday but I was on Piqray & to me it was horrible. I had the rash & High blood sugar due to the medicine. It was awful. So I’m hoping when I get to the next one I can tolerate much better. You stay 💪too.🥰

[Hotlantaphatz]

thanks Kelly for your support!