Faslodex Girls Thread 2014

Thanks jobur! Glad to hear that it's been effective for you, but sorry to hear the pain might just be part of the parcel....

Tsu. If ct shows more bone mets then that is progression. You'd want to change drugs then.

Gailmary

I’ve had 6 Fulvestrant injections now and after this last one I have lost sensation in parts of my right glute/hip. Not right near the injection site but further down and on the outer side of my hip. I get the shot on the backside of my glute but I hear that sometimes it can hit the sciatic nerve and that the outside hip might be a better location. I am not sure if my nerve was hit but what I am feeling sounds like neuropathy. My whole right butt cheek to the hip feels like a tingling burning sandpaper sensation. And when I lightly touch the skin it hurts except areas I can’t feel at all. The numb areas are about the size of a quarter but the entire area that is bothering me spans 8-10 inches. It started 5 days after my last injection. Anyone else experienced this or heard of it? It is quite painful.

I also don’t have much padding. Which I feel like makes it more painful? I have had a wretched time

Update: I saw my oncologist last week. He and I agreed that I will remain on hiatus from treatment for three more months, with scans in July.

Thrilled,

Tina

ann273: Faslodex appeared to be helping things after my first scan but the second showed some mixed responses again I too am premenopausal and on Zoladex

Tina: awesome news!

I just had my first faslodex shots today. My butt is super sore and my back aches. Im kind of rethinking if this is my only option right now. has anyone gone off of it shortly after starting because of SE

sungem— I’m fairly new to it, too. Just finished my third loading dose this month. The process of the injections and the pain following my first dose really blindsided me. Heating pad and epsom salt baths have have been helpful for encouraging muscles to relax. I’ve been using topricin for feet (which has extra things in it for nerves) on the injection area, too. I’m also getting fuel from the book Freedom From Pain by Maggie Phillips and Peter Levine. It gave me some tools for slowing things down at the office when I was getting the shots.I can relate to the feeling of not knowing whether you want to do it again.

Gailmary, my doctor wants to add an AI (aromisin or Arimidex)to my faslodex after I finish chemo, hopefully by early fall. I was on letrozole and didn’t enjoy the side effects so I don’t blame you for wanting to stop it. I’d rather get a shot each month than chemo. The side effects I’ve been having since I started faslodex have been milder than with letrozole. I hope you have good response after stopping the letrozole.

Thank you so much for your relies everyone. That's so helpful. I've been on ai's for 3.5 years with very little SE other than fatigue, so it really surprised me. I think I have the option of trying arimidex and if that doesn't do the trick, I can always go back on the faslodex

Wouldnt a searchable database of us and all our stats be great. Now I'm wondering what the nurse meant when tomorrow i can talk to the dr about the order of the meds I will likely take.

Seems im still taking first line after dx of mets and faslodex alone isnt an option. Maybe that's what she means. Will find out tomorrow.

Where does fadlodex fit in the order of drugs you have taken? And im still wondering if its worth risking new additional side effects if I just switch ai's due to major insomnia. I really dont want to take drugs for sleep. 4 hours a night is not easy. More than anything that's why I have low energy. UGH

Gailmary

Gailmary,

Many of us have done very well on Faslodex alone. Good luck to you!

Tina

This is huge news! We could potentially take a pill instead of the shots!!

https://www.apnews.com/Globe%20Newswire/dadddbe318d9cc0a8c29c996af78889f

^^^ that's the trial that my MO was telling me about, she wants me on it as soon as it opens. I'm on the Alpelisib trial with faslodex but unable to take Alpelisib because of the SE's.

Hello to you all, I feel so lost!! In march I was told that my cancer has come back in my bones. I started taking Ibrance 125 and Faslodex injections. April I was given Faslodex every other week and by the end of April my White, red and platelets crashed. I've been trying to recover my white blood did increase and I've had 3 blood transfusions. My oncologist took me off Ibrance in may and now I'm only receiving Faslodex injections. My oncologist just told me that my tumor markers have increased slightly but could be from the injections. I feel so defeated because before I was told my cancer returned I felt great!! I had energy, very little pain and now I feel exhausted all the time. Has anyone had issues with blood counts? or has anyone had increase in their numbers from the Faslodex ?

Hi Momdin,

I am sure others will chime in but my take - it’s the Ibrance not the Faslodex that caused the blood issues and fatigue. I was on Ibrance for only a few months and, despite a dose reduction due to low neutrophils, had to stop as the anemia was amazing. Fatigue is also a widely reported issue which I experienced.

I have found that the Faslodex has been relatively kind. I have some aches and pains and some fatigue but overall it has been tolerable. What about Abemaciclib? Can you ask your MO about this? I am trying to gain access but so far no luck here in Canada. It has recently been approved but still does not seem to be available through my Cancer Agency.

Sorry you are dealing with all this but you will find friends here with a sympathetic ear and much knowledge to share.

Pat