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Wanted: Veteran Members of the Fanny Pack to Share Experiences

tina2
tina2 Member Posts: 757

All,

I'm eager to discuss the side effects of long-term IM injections with others who have been on Fulvestrant/Faslodex treatment for many years. Do you have increasing pain, discomfort and mobility issues? Have you suspected the cause to be repeated injections themselves rather than inept administration? Have you changed treatment because of this? Your input is welcome on this thread or via PM. Thanks in advance.

Tina

P.S. Oral SERDS seem to be off the table at this point.

Comments

  • candy-678
    candy-678 Member Posts: 4,085
    edited August 2022

    I have had Lupron injections for almost 5 years now. 4 of those years it was a monthly fanny shot. Now we switched to 3 month dosing--- due to travel to the cancer center, not due to numerous fanny shots. I wonder if getting my ovaries out would be a better choice. But then surgery, recoup of surgery, off Lynparza to raise the white counts, etc. So I continue the shots.

    I have not seen any issues with the multiple IM injections. Not that I know of....

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2022

    I was on Fulvestrant shots every month for 18 months or so. I did/do have lumps from those shots. I was told by MO to be sure to apply heat and cold (alternating) for a day or two to get that med to disperse better.

    Shots stopped in May for me. Don’t have any lingering pains, just lumpy.

  • cowgal
    cowgal Member Posts: 625
    edited August 2022

    Tina, I have been on Faslodex for 2 1/2 years. I seem to be one that gets some of the worst side effects of some of these drugs. I would have started Faslodex and Ibrance in February 2020. I started XGEVA in October 2019 I think. Anyway, I developed sciatica on my right side and lower back pain within a month or two. I had never experienced either of these conditions before starting these two drugs. I did go to a spine specialist and I have degeneration, stenosis, a bulging disc so there are obviously some age related issues going on...I am 58. I lost mobility quite swiftly and when I woke up each morning my pain level was a 10 to get out of bed and I was unable to sit on a toilet for at least 30 minutes as I was unable to do any sitting of any kind and had to walk around as best I could until it was at least tolerable to sit. When I started Faslodex, they were giving it in the muscle above my buttock. After my problems started, they only give it to me in the side IM injection site and I have been told that now they only give it in the side location for anyone else on Faslodex. I did do PT but it made things worse and the PT and spine doctor thought it was time for surgery. I was not convinced that surgery would make anything any better and might make things worse as I think that Faslodex and or Ibrance exaggerate the pain in areas that are arthritic or degenerating. I did make some lifestyle changes that have helped some but not completely and I still have problems. I had to trade sides of the bed with DH so that my bad side was not the weight bearing leg when getting in and out of bed and I sleep with a wedge under my top half and pillows under my legs to elevate. Both the PT and the spine specialist insisted that with what my spine x-ray and MRI showed that I should be most comfortable sleeping flat on my back with just a pillow under my head, which is the worst for me so that is why I am doubtful that surgery would fix anything because I am not sure they have it figured out what needs fixing and it may well not be anything that can be fixed other than changing medication. I have been NEAD since July 2020 so there is some positive and I keep working to try to figure this out on my own to improve my situation and am way better in 2022 than I was in 2020. I also have lumps from the shots. I am hopeful that they will get an oral SERD that is effective but make it where we don't have to get Faslodex shots every month.