Hi. Just wondering if anyone has been on faslodex for years and now is having long term effects? Have been on it for 6 years and I’m starting to have a lot of pain in lower back and hips. It’s really painful. Thanks so much. Marianne marino
faslodex: Hi. Just wondering if anyone... - SHARE Metastatic ...
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Yes. I was on it for for over five years and my poor little tush couldn’t stand so many shots. I have been off of it for 5 months and still have pain. I am on Orserdu which is a daily pill that replaces the shots. Ask your doctor about it. The medication was approved by the FDA in February of this year. This is my second month on the medication. I need to take anti nausea pills fifteen minutes before taking Orserdu. I get muscle aches from the medication and take Oxy and Pregabalin for the pain. It’s not an issue for me
I was on Piqray which had a lot of nasty side effects. I feel my old self on Orserdu. I live in Rochester NY and need to order the medication from Buffalo as not every hospital carries the medication.
We’ll see how it works I just had a small lump removed from my left breast at the base fold line and it is cancerous. When we have breast cancer there is always a concern
Be well Reenie
Hi RbethI know this post of yours is 9months old so Im hoping you are still active on this sight and receive this question. How long were you on Orserdu and did it work? When you first started Orserdu how long where you taking it before side effects like the nausia you mentioned started.
Sorry I don’t recall. I went on chemo infusion. Had only two infusions then TRUQAP was approved in November. I have been on and off since February. Started on 200/two pills twice a day. Too much diarrhea 24/7. Down to 320/two pills a day twice a day. Same diarrhea. Down to 200/one pill twice a day. Same diarrhea. I am off for a week then I’ll get less and see what happens. It causes sleep issues. I sleep day and night.
The good part about TRUQAP is it is lowering my cancer numbers. I get my blood tested weekly before I take the medication.
My physician at msk in nyc developed it. I have breast cancer in my colon and stomach lining.
Best to you. Rbethgold @ yahoo. Reenie
I have been on Faslodex(Fulvestrant) 9 yrs and began this Spring with an odd mix of symptoms that have been examined in detail with no cause found and am going for a Neurological consult in about a month. Pain is not the primary symptom I am experiencing but I am starting to learn about Drs not leaving pts more than 8 yrs on Fulvestrant because no one knows the longterm effects. I hope you can find the cause of your pain and get help❤️🙏👍
Fulvestrant was my second med and I got over 9 years on it, 2009-2018. I don't remember having rough side effects. The syringe full of it should be warmed a bit so it's not fridge cold--hands or arm pits work for warming it. Take weight off the side being injected, plus it should be given slowly. Do they do those things when you get it? I loved not having the daily reminder pill, LOL. (I have no idea why this is showing up with bold letters!)
I got fulvestrant injections for a long time and eventually found a way to help my body process it: right after the injection, I drove to a beautiful area up in the hills, parked and walked for a solid hour. The hills were gentle ones and, while I was tired afterward, the pain and discomfort was gone and didn't return until the next injections.
I figure that vigorous exercise warmed the nasty stuff and helped to move it away from the injection site more quickly than if I'd just gone home and sat on my heating pad.
That said, after my walk I did spend an hour or so on my heating pad, just to be sure.
Beware. The 2 times I had pack pain, my cancer had spread back and hips.