Faslodex Girls Thread
Comments
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Renee - I am not getting a combo and the Faslodex is working - I think the combo idea is very new but I've flunked all the AIs so don't know if that will stop my onc from re-prescribing them - I am seeing my onc tomorrow and I am going to ask her the question. You should probably call your onc and get an appointment to discuss too.
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Renee,
I've been on Faslodex alone for nearly four years as a first-line treatment. It shriveled my lung mets and rendered them inactive in less than half that time.
Tina
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Tina, You are my shining STAR....4 yrs! that is great! Don't know but isn't that some sort of record? I hope that it stays your "go to" Tx for a long time. Have a super summer. Hugs, Peggy
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Momonana6, there was someone else on this thread who got 7 years out of Faslodex!
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Renee, Here is something I noticed just this morning on faslodex plus ibrance for 2nd line treatment
http://www.breastcancer.org/research-news/ibrance-offers-benefits-as-second-line-txI am just on Faslodex alone too as 2nd line treatment. I only got 9 months out of anastrazole.
Sandy, How long have you been on Faslodex? Did you get any kind of results from the AIs before switching to this tx?
4th set of shots today, 3 different RNs and it seems like effects are different with every one. This time more numbness than pain so far. Will see tomorrow. I asked her to go super slow this time.
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All,
There is an active Ibrance thread in this forum. It includes a lot of discussion about using Ibrance in tandem with Faslodex. You may want to check it out.
Tina
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yeah I've checked out the thread on Falsodex and Ibrance and asked my MO about it. Apparently it isn't really accepted as second line of treatment yet by all insurance companies and he said the SEs would really impact QOL for me. I was in the AI for less than a year but NED for four months
))I hope the Falsodex works. I guess I just panicked a bit yesterday. I'm really tired right now and work is crazy so I guess I had a moment.
Thanks for the feedback!
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Hi Renee, here are a few studies. Most are Faslodex alone versus faslodex with something, and they are second-line therapy. It's a legitimate standard of care, particularly as second-line.
http://www.ncbi.nlm.nih.gov/pubmed/23902874
http://www.nejm.org/doi/full/10.1056/NEJMoa1505270
http://www.ncbi.nlm.nih.gov/pubmed/24327334 (this one is really small so don't pay too much attention)
http://www.ncbi.nlm.nih.gov/pubmed/24317176 (this is the paper comparing two cheeks with one cheek)
Pam
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Hi everyone. First posting. Our mom is newly on Faslodex (this week will be her third injection). Concerned about her insomnia and intestinal distress (varies from gas to constipation to loose stools). Has anyone experienced these side effects on Faslodex? If so, how have you coped?
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Farmsupport - I don't have the insommnia very often and when I do I take half an Ativan (it's an anti-anxiety drug prescribed by my PCP a few years ago - I probably take it twice a week). As for the intestinal distress - I noticed it a couple of months ago and have found that the few days after the shots I am careful not to eat too "high fibre" but the rest of the time I do as constipation has been my constant companion for the last seven years under various treatments. Afraid there isn't much to do about the gas - if it gets to be too uncomfortable talk to your drs. and see what they recommend.
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Jobur - I've been on the Faslodex I think for about four months - as for the AIs I eventually flunked all of them - they worked for a while but the se's were just way too much for me - I was suicidal on Arimidex and Femera sent my BP into the stratosphere even with meds to control it - on Aromasin (which I took with Afinitor) I had no way of knowing se's as the Afinitor was just horrible for me I was so short of breath I couldn't walk from one room to the other without resting, now all of these actually worked a little at stopping progression but I couldn't stay on them - the Faslodex is relatively easy but the fatigue has pretty much brought me to my knees for two weeks every month so we'll see - right now things are o.k.
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Renee - talked to my onc today about adding "something" to Faslodex and she said "not going to do that" she was aware that it's being tried in many places but until she sees "good" results all round she isn't going to be doing it - her thinking is that if you're doing well on Faslodex - then stay on it!
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Dear Famsupport, Welcome to the community. We are glad that you reached out here on behalf of your mom. Here is some information on our site about Faslodex and its side effects. We hope that you will find support and information here that is shared by those who understand and can offer their experiences. Stay connected and keep us posted about your mom. The Mods
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hi! I'm 5 weeks in on a fulvestrant and ganetespib trial and my hands tingle and my fingers cramp up and pinch in together the day of treatment. I joke with my husband that i have T REX hands since i can't separate my fingers. I can't now and it's difficult to type. Does anyone else get this?
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Huh! That's a new one and I've been on this thread two+ years. Maybe it's the ganetespib?
I wonder if extra potassium or other 'iums (sodium, calcium) might help? Cramping is usually a lack of electrolytes. Drink some Gatorade before you go in for the treatment?
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Hi,
I'm Lisa Marie,
I'm on Faslodex!! My tumors have shrunk but I don't believe it's the drug, it all the prayers and love..
This is my forth time and I'm having a really rough time. My neck and back are killing me.. I feel tired and don't want to do anything. I want to quit it. I also feel depressed, just low.
Amy words or advice would be a blessing 😇
Thank you,
Lisa Marie
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I just got done with the 3 or 4 loading doses of faslodex every 2 weeks. I did not feel any side effects on the first one. On the third dose, I'm extremely tired. with joint pain. I'm hoping this eases up once I go to once a month. I'm tired 2 to 3 hours after waking up. I have a hard time sleeping due to the knee & joint pain. It feels a lot like being on Femera. I hope it keeps me stable as long as Femera (4 years).
Terri
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Thanks Sandy, I see my MO on Tues and maybe there will be some good news in the numbers. He feels the same way. I can't wait to find out if this drug is actually working!
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HI Renee,
I'm on it alone also, and it seems to be working. I also get Xgeva, which is a bone strengthener. I've wondered off and on if I should be in combo with something else, but since my tumors aren't growing, I'm good with just the faslodex.
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Well Tuesday will be interesting because I just found a new lump in my left armpit. It is small and hard but doesn't hurt to the touch. Not sure what my TMs are so with this physical change if there are any changes in the TMs I wonder if he will want to see how things go or make a quick change. My husband is coming with me on Tuesday. I say it isn't bothering me but I haven't been able to sleep and I hate this sense of having no control over the situation. Very frustrating to say the least.
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Thanks JFL. I really appreciate your response re Faslodex. Sorry that it took so long. Hope that you are doing well. Pegg
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Dear Fanny Pack,
It's a Happy Anniversary here. This month marks four years since I was diagnosed with lung mets and started treatment with Faslodex. I am pleased to report that last week's CT scan of my chest, abdomen and pelvis shows no change in my lungs since last year's scan and "no definite metastatic deposits."
I'm annoyed by "definite," but tell myself the radiologist used that qualifier to cover his fanny.
Tina
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Renee - I am much older than you and have had problems with periodic itching with little bumps that nearly drives me insane. It is usually in the same spots on my legs and butt and occasionally on my arms. It comes and goes, no rhyme or reason. But, it is always at night, never in the daytime. It started happening after menopause and pre-cancer land so I'm thinking it has something to do with the loss of estrogen. My doctor has tried special cremes that haven't helped. When I have those episodes I use Benedryl 25 mg. and it usually helps pretty quickly. Sometimes it takes two of them to solve the problem. I also us Aveeno Anti-Itch Concentrated lotion which helps soothe the itch until the Benadryl kicks in. Hope you find a simple solution.
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Good news Tina!!!
Ah yes, the radiologists of this world - one of mine thinks my appendix was removed surgically, NO! and another constantly refers to my mastectomy - NO! (my breast tissue was autolysed by chemo and rads) problem is that once this appears on a report it is repeated again and again - I have recently lodged an official complaint to get these references removed as I'd hate to be taken into Emerg in pain on the right side some night and told - no you can't possibly have appendicitis!!!
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Yay Tina! Four years is a lot of holes in the rear.
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What great news, Tina! There's hope for us all.
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Hello Everyone,
I was wondering if someone had some advice or could direct me to some articles or research? I was switched to Faslodex back in March after a progression on aromasin. Since then my tumor markers have consistently gone up. My onc wants to wait out this next month to see what happens with the tumor markers again and then he will probably order a scan after this month. I am a bit frustrated because I am nervous about what could happen in terms of progression in this holding pattern of a month I am in. I only have mets to the bone and would like to keep it that way for as long as possible.
Also, I am wondering, if I had responded to Letrozole and then Aromasin but not Faslodex does that mean I am no longer a responder? Has anyone had this happen? I'm wondering if they would keep trying hormones if the Faslodex never worked. I know that these are questions I could probably ask the doctor but I guess they are kind of premature and he doesn't really like to delve into stuff that may or may not happen until the right time.
Also, I have heard that there is some research out there about survival rates determined on whether a certain medication works for a particular length of time and I was wondering where I could find that. I was on Letrozole for 6 months, Aromasin for 3 months, and now it seems that the Faslodex isn't even working.
Does anyone also think that this is a ripe time for a second opinion? I had gotten a second opinion when first diagnosed but I'm not sure if at this point it would make sense to get another one.
Any input is so greatly appreciated. Thank you ladies!!
Renee
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Renee,
I hear that Faslodex takes awhile b/4 good results come in. I'm in the same boat, My markers went up, but I just started Faslodex when Femra, Aromasin with Affinitor failed me. The loading does has me so exhausted that I can sleep all day and night. I hope this goes away after I'm off the loading dose.
We have been scanning (PET scan) every 3 months for the last 2 years. I have not been stable since.
Terri
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Ughhh Terri, I'm so sorry. That sounds amazingly frustrating and scary. I'm done with my loading dose and I guess that is why he wants to wait and see what happens. I didn't have the exhaustion. Actually, I have been having the opposite an not been able to sleep at night but then I am tired the next day.
I guess I am going to have to hold tight and figure out a way to distract myself. I've been on vacation at home for the last week so going back to work on Monday should help out.
Thanks for the response! I really hope they get you stable soon.
Renee
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Hi Renee, Faslodex works on a totally different mechanism than Letrozole and Aromasin.
The latter two are aromatase inhibitors. Which means that they block the enzyme aromatase. I'm 90% sure that their mechanism is they prevent the body from converting an estrogen precursor to estrogen.
Faslodex (fulvestrant) is an estrogen receptor antagonist. What it does is to "bend" the estrogen receptors on the surface of the cancer cells so that the receptor no longer recognizes estrogen and cannot bind to it.
It is totally possible for someone to respond to one and not the other. Maybe your cancer cells bind estrogen differently than other people. Maybe you have so many estrogen receptors on the cancer cells that the fulvestrant can't prevent binding.
To answer your next question, it is my understanding that people often respond to the next hormonal for less time. I got three years from Tamoxifen, 2.5 from letrozole/fulvestrant.
There was a very good talk on this at the last MBC Network conference. The lady talked about how cancer cells respond to the lack of estrogen by creating more and more estrogen receptors. Eventually you can't block them all, which is why hormonals fail.
http://mbcn.org/special-events/category/speaker-vi...
As for second opinion, can't hurt, might help. I don't know of they can tell you anything different, but they might have some additional strategies for you.
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