Faslodex Girls Thread
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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....
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Tina. I would try it again. Sometimes after taking that break the side effects are different. As long as cancer is still halted by it why mess with success. Youre gonna run out of drugs that work before the czncer progresses. Then what r u gonna do?
Gailmary
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Tsu. If ct shows more bone mets then that is progression. You'd want to change drugs then.
Gailmary
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Oh for sure, we’ll be switching-Oncologist and I already discussed going back on chemo if there is progession. February 4th CT showed nothing different and I have another one March 29th and Oncologist April 2, so I’ll know everything soon enough
Be kind to yourselves
Tsu0 -
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 time0 -
Hi Ashlyn, I noticed that you changed to Faslodex and continued on Ibrance since there may have been progression. What has your experience with Faslodex been like? Has it been more effective than with Femara? I am in a similar situation where I'm on Ibrance/Femara and we are suspecting progression and am curious to know if changing to Faslodex has been helping others. I've definitely seen some literature on here that says sometimes cancer progresses not because of resistance to Ibrance, but because of resistance to hormonal therapy.
I had another question about taking faslodex while on ovarian suppression. I'm premenopausal and havent had an oopherectomy. I get a zoladex shot to suppress my ovaries. Is Faslodex a viable option in this case?
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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
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Wow, Tina2—-that is terrific news! 🥂🍾 Iam hoping I will get there too someday 🙂
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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!
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wow, Tina, that is great. Didnt know that was a possibility. Im going off faslodex in 2 months though not because of progression. I hope i will be able to use it again some day. I'm also on femara and going just to femara and xgeva quarterly.
Gailmary
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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
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Give it time Sungen. The sore butt and ache probably won’t last and there are ways to minimize the initial symptoms (look back). I’ve been on it for about 16 months and, while I do find I have increased fatigue and more aches/pains, I also know that this can be a powerful treatment that beats the heck out of most of the chemo options. Even Xeloda, which is pretty low on the SE scale, has some nasty tendencies (particularly hand and foot syndrome which reared its head with me very early on).
Hope thepain eases.
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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.
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i cant relate to that. In fact Thursday at my appointment I plan yo ask to continue on it. Only once did I have lots of discomfort from the shots.right now im on both letrezole and faslodex. Dr said lets quit letrezole at the 2 yr mark in May. Id rather quit letrezole as i have severe insomnia just as i did 7 yrs ago when i took it before metastasis.
Everyone, please tell me sleeping is not an issue on faslodex. The one time the shots hurt is when they were injected in my hips as opposed to buttocks. Nurse said she always gave them there. Never saw her again. Otherwise gotta go slow and relax the leg on the side getting it. Bssically i stand on opposite leg and alternate to other leg for other butt cheek.
Gailmary
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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.
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LIbby, maybe you will be lucky and the side effects when you add the AI wont be as bad the second time around. Its been better for me in spite of the severe insomnia. The first time i also got fibromyalgia from the femara. I hear its not unusual to have different side effects the second time around.
Gailmary
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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
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Ashlyn, thanks for letting me know. I am also on Zoladex, Letrozole and Ibrance and might move to Faslodex.
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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
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update: saw MO.
Immediately he said to drop the letrezole. It can cause insomnia. Therez no order to meds to use that nurse implied. Earlier he said he wouldn't change for 36 months then he said 24 months. Its been 21 months. He said multiple times that i will be fine. Not like I'm worried.
This means i will stay on faslodex. He said it means shots every month. Im great with that. Far rather than trying to remember pills.
Wishing you all the best,
Gailmary
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Gailmary,
Many of us have done very well on Faslodex alone. Good luck to you!
Tina
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Tina, thank you. My dr has reassured me i will do well too. When he took me off ibrance after a year he said he can always put me back on it. So that may be what I can expect later. But as I told my friendn I wont know what I get next till there is progression. That could be years and new treatments may be available then.
Just hanging in there and hoping ill be able to sleep better soon.
Gailmary
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This is huge news! We could potentially take a pill instead of the shots!!
https://www.apnews.com/Globe%20Newswire/dadddbe318d9cc0a8c29c996af78889f
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chemomaze! That’s promising! Thanks for sharing.
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^^^ 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.
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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 ?
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I have been doing very good with faslodex and Ibrance. But this month I have noticed pain on both sides of my hip on the same spot. My last body scan showed activity on one side of my hip and calling it possible metastasis but is it possible to have possible metastasis on the exact spot on both sides? My friend insists it is faslodex because faslodex caused her so much leg pain she was unable to walk. The lesion on my spine is showing positive results (stable) with this treatment so I am praying it is faslodex on my hip. Pain is a sharp pain like a thick need poking me. Just wonder if anyone else
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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
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Sadlesservant
Thank you for replying I will look into Abemaciclib.
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