Anyone been on Fulvestrant 9 yrs?

[fancydog]

Having bizarre symptoms that put me in the hospital twice in June, no CA found anywhere!Vision and balance off, toes numb(never had neuropathy),vertigo, N/V wt loss 20+, missed tx June now having hot flushes.Seeing Dizziness ENT next week and Balance Disorder testing.

[Pups2Cute]

Hi Fancydog! I’m sorry you’re experiencing this. It sounds like you’ve been doing well on Fulvestrant for a long time and this is a new issue. My Mom started Fulvestrant recently and just had her second set of shots last week. She had switched from Ibrance and letrozole after over two years of it working well for her. Now that they detected a liver met and she switched to Fulvestrant only with trial med. We’re not sure if she’s actually on the trial med as well or the placebo due to the nature of the study here in Canada. Do you take only Fulvestrant and is this your second line of treatment? I heard it typically has very if any negative side effects for most. I hope your symptoms improve soon. Take care

[fancydog in reply to Pups2Cute]

I only had one + lymph node all 9 yrs I have been on it. I hope your Mom does well, yes I'm on it only(old protocol).

[Pups2Cute in reply to fancydog]

oh that’s great! Thank you! I hope it’s effective at shrinking my Mom’s liver met. She was nead before that with Mets to some bone that isn’t detectable in scans.

[Timida in reply to Pups2Cute]

I’ve been in Fulvestrant for 4 yrs and it has worked well. There are no apparent side effects. My scans remain clear. I had bee on Herceptin but it seems to have caused Pulmonary Hypertension so that’s why I began Fulvestrant. I am concerned about taking it long term. I hope things improve for you and that you get to the bottom of this.

[Flag1947]

I was hospitalized in August (last year), with "altered mental status" three days testing, no conclusion - possible seizure? I have been on Ibrance and fluvestrant for over 5 years. Hot flashes/cold night sweats and of course no hormone replacement therapy allowed. I had neuropathy from nerve damage in the 1990's. I have not been losing weight - just sleep. I know the treatments have been working but my CA-27 has steadily been rising since Jan. I believe your body can build up a tolerance for medication and these symptoms have become much more frequent and severe.

[PJBinMI]

I got over 9 years on fulvestrant. Didn't have any of the side effects you mentioned. I hate to have to ask this...have you had an MRI of the brain? Brain met can cause some of the side effects you mention. Also, do you happen to have lobular bc? It can be sneaky and harder to see on scans! MRIs better than CTs. (I have had metastatic lobular bc for over 19 years! Some of us do really well. Had a brain met, treated with focused radiation, about 5 years ago.) I hope you find out what;s going on. Oh, Effexor (rx med) got my hot flashes under control. The long acting Effexor.

[fancydog in reply to PJBinMI]

I've had brain MRI and special Brain CT, nothing found. MBC is ductal. Since being off Fulvestrant since May I began having hot flushes 2 days ago, started taking a little Cymbalta I had on hand. Thank you for reply

[TwithBC in reply to PJBinMI]

...were you on Letrozole prior to fulveatrant..have you been on Ibrance with either?

[PJBinMI in reply to TwithBC]

Yes, I was on Letrozole for nearly five years before Fulvestrant. Targeted treatments weren't around then. When they were, my onc added Ibrance to Fulvestrant briiefly in 2016 but it damaged my lungs, interstitial lung disease.

since Ibrance was stopped, that's been stable.

[diamags]

9+ years. No side effects like you're having. I'm sorry you're going through what you're going through.

[LadyKatarina]

Be aware that the generic versions of fulvestrant sometimes have other additives. Some companies add preservatives so the syringes can be stored at room temp--but many of us react to the preservatives. There are many generic brand names that are harder to tolerate. You can ask your infusion center pharmacist what you are getting, and if they have changed recently. I did and made an Excel chart of the generic fulvestrants vs my symptoms. They ended up ordering me one that I could tolerate. At present I am on the brand name of Faslodex by AstraZeneca. Best to you!

[fancydog in reply to LadyKatarina]

That is very interesting, I was switched to the preservative type about a yr ago. I had been on the Faslodex from AstraZeneca all the yrs before!!

[fancydog in reply to LadyKatarina]

What kinds of side effects did you have?

[LadyKatarina in reply to fancydog]

I only got three injections--but by the third I had pretty severe brainfog for 18 days. I have talked to others here and on FB that have reacted to the preservatives versions too. The other brands caused me to have brain fog in the first two weeks. My onc suggested I try letrozole instead--but that caused problems too--AI's are really harsh drugs--so I ended up taking a break for awhile. Now I am back on AstraZeneca Faslodex and I am having way fewer problems! Best to you!

[LadyKatarina in reply to fancydog]

Can you go back to Faslodex brand? Another woman and I think it does build up in our bodies. Half life is 50 or 60 days, and they give it every 28. Maybe you need a couple month break? Are you taking fulvestrant with anything?

[fancydog in reply to LadyKatarina]

I am old protocol, Fulvestrant only. When first dx metastatic I was on Letrozole only and had progression in 9 months, then Taxol 7 tx only and had very bad reaction, was off all tx for a month, had a scan that showed only 7 tx of Taxol had cut tumor load in half, then was asked to choose between an oral or Faslodex, been on it ever since.

[13plus in reply to LadyKatarina]

I had Faslodex for 3 years with iBrance and always had ongoing itching , even taking Claritin which helped enormously but the itch would keep flaring up. Then after a year off I was taking Faslodex again while in a trial. I knew it was different because the nurses were talking about how less think it was and so much easier to inject. I had NO issues at all with it! I had to end up back at my original treatment center and as soon as they gave me the old version again. Bam , the annoying itch was back! So it’s very interesting to hear of your experience trying different versions!

[SeattleMom]

Hello, Kim!

Hope you are feeling better! Did you get a diagnosis for your symptoms? God bless you!

Linda

[fancydog in reply to SeattleMom]

Thank you for your interest. Tomorrow I see a special "dizziness" ENT then Tues early I have testing for a balance disorder. Thursday I see my Oncologist and supposedly get my Fulvestrant shots unless there is a desired change in treatment. I have missed treatment for 2 months which is the longest I have gone in between shots. My disabling Vertigo is the main problem I think I have so we will see what comes of this week.❤️

[SeattleMom in reply to fancydog]

You will be in my prayers! Hope everything gets figured out and you are soon back to happier days! 💗💗🙏🏻🙏🏻

[24siofra]

I have been on Fulvestrant for 8 months after 16 months on Ibrance and Anastrozole ( there was progression in the bones). I do get strange side effects which people keep telling me are completely unknown! I have a kind of tight feeling in my head and also sometimes a bit of vertigo. I know this as I had benign positional vertigo before. It was worse to start with then went away for 3 months but came back less intensely the last three weeks. But right now is better again. Not very encouraging but at least it seems to be getting less. I hope yours does too. Take care.

[fancydog in reply to 24siofra]

❤️❤️❤️🙏

[fancydog in reply to fancydog]

Thank you All for your input and support. I have been continued on Fulvestrant generic and now doing fine. Scans in November!