Faslodex Girls Thread
Comments
-
Susan, thanks for the word on what happens when you stop the drug. Sounds like you had an awesome time in Europe; I'm insanely jealous. Wishing Ibrance goes easy on you.
Pam
0 -
Cathy, I am so very sorry about your brother
I had a very bad round on the Faslodex in April, but the May was a breeze. I was worried to, it was just a bad month though. I'm hoping you are having "just a bad month" also.
Susan - I'm halfway jealous, including your buttress
0 -
Thank you Sandy. I wrote the name of that down. I have problems with a lot of drugs making me very sick. Glad to hear of your regression. Keep it up.Cathy
0 -
Cathy, Iam so sorry to hear of the loss of your brother. My heartfelt condolences go out out to the family...such a sad time..God bless. Pegg
0 -
Hello everyone....It has been a long time since I have posted here. I don't visit as often as I did. I was DX in 2000...recurrence in 2009 in pubic bone. Have been on Faslodex since Nov 2009. I never felt great after the shot, but felt better in a few days. Now, after 5 yrs, I notice I don't ever feel really good. A BIG question, does everyone take 2 shots? I'm asking because I have always taken one shot...except for one time about 3 yrs ago when it was suggested 2 shots would be better. So I tried 2 and thought I was going to die. Decided that was it for 2. Went back to one shot. Where I live, Duke Oncology has taken over our healthcare. They are bound and determined for me to take 2 shots again. That is Duke protocol. Just when you think you have things worked out, they throw you another curve. My thinking is "if it ain't broke, don't fix it"
I wish the best for everyone here. This site really helped me get through some really rough days and nights back in 2000.
0 -
Hey MKL,
We just had this discussion in my group on Friday. It is now 2 shots for everyone. I'm in NY and know people being treated this way in several hospitals. I don't think it is just Duke protocol.
It does suck. I passed out after my first one the first time!!!
0 -
MKL,
I was switched to the now-standard protocol of two shots after 18 months when my doctor was replaced by a younger oncologist. The studies at that time showed a much better outcome and she was insistent. I am not surprised that you are being asked to change your protocol.
*susan*
0 -
Yup, it's two shots here in Canada now too and I feel pretty crappy for the first week after so I make no plans and just catch up on my PVR and reading - the fatigue is what is getting to me mentally - it's making me depressed. Have onc visit and PCP in next two weeks - going to talk about QOL AGAIN!
0 -
WHINE ALERT
I had my injections the Thursday before last. For the last several days I've had occasional hot flashes, constant low-level nausea and fatigue. Ugh. Fortunately this doesn't happen regularly, so I'm lucky. However add this to the oppressive heat outside, and my incessant backache and I'm a whiny one today. I'm trying to get some work done around the garden and house and have an important presentation meeting later today, but I'm feeling oddly weak and incapable.
I rarely dream about having cancer, but have had three cancer-related dreams in the past month. In the last one, just a few nights ago, my "medical team" (what a joke--in actuality I have one doctor) emerged one by one from behind a curtain to inform me that I had progression. In the dream, I pretended this news didn't bother me a bit. But I felt as if the floor had dropped out from under me.
Tina
0 -
Tina2, you need to rest. One thing I'm learning about all this is we need to listen to our bodies, they will tell us when we're over doing it.
0 -
Tina 2 sounds like you are def in need of some down time.
I have a side effect question. I have been experiencing a steady increase in weight since being on this Faslodex. I haven't changed my diet and I am currently training for NYC marathon so right now I am running about 19 miles a week. I did cut out yoga to accommodate the running schedule.
I also noticed that I am constipated, and feeling all out of sorts sleep wise. I can't sleep at night but then I can't get up in the morning.
The nausea is always there even if very subtle.
Does this sound about right? I'm trying to figure out how to adjust my lifestyle to combat these SEs if that is possible.
Renee
0 -
MKL, Faslodex since 2009?! Tina2, correct me if I'm wrong, but that sounds like a new record! But to answer your question, yup, 1 shot per cheek every time is the protocol here as well. When I was researching Faslodex I think I remember finding a clinical trial that concluded the 2 shot regimen was more effective than 1. Hope it goes easier for you now that you are used to the tx.
Tina2, I don't know you well, but have read some of your posts, and you sure don't stride me as being a whiner! What a horrific dream! Sounds like progression anxiety is making it's way in to your dreams. Hope you're feeling more like your strong, capable self today.
Renee, Yup, I'm with you on the se's, except maybe the constipation. It has def affected my sleep. I had finally(!) been sleeping well again before the tx change, now can't get to sleep at night, then when I finally do I wake up several times a night with hot flashes. I have an rx for generic ambien that helps, but you're not supposed to take it every night. For me, the nausea often precedes a hot flash, and am also back to getting plenty of those, day and night. My weight has been creeping up too, but I attributed it to too many ice cream treats before bed. Have cut that out, so we'll see. Hope you find something to help you sleep, as that affects everything else. I have not tried OTC melatonin, but it seems to help some people.
Wow, that's great that you're training for the NYC marathon! You go girl!!
0 -
Hi Ladies, I find this so interesting to see that I'm not the only one with extreme s/e on Faslodex. Since starting it about 3 months ago (after liver progression) I am tired ALL of the time. And most days also weak. I usually have to force myself to do anything and it seems to be getting worse. I told my doctor (not my reg MO) but one that fills in on days when its often just shots. She said "that is odd" it is a hormone treatment so I don't understand why it would do this. Well she started to make me wonder about myself and my symptoms. My bone pain is also increasing since I was dx with progression to bones. I really doubt after my CT scan Monday that I will be staying on it. That means chemo but if I feel better and less pain then I find myself looking forward to it!Good luck to you all!
Cathy
0 -
Rseman, I gained 7 pounds on Fas immediately. Over the last two years I've gained close to 20 pounds, but a lot of that is me feeling sorry for myself. So maybe half is Fas. Susan just told us she lost 8 pounds within 6 weeks of stopping the drug.
Tina, you are not a whiner. You need some A/C and feet-up time. Chocolate might help too.
All, the Faslodex label says two shots. Yes I know I'm slightly crazy for having read the label, but I like to know.
And Cathy, just because something isn't a "more than 5%" side-effect doesn't mean it isn't a side-effect for you! My Mom is going through this right now with an anticoagulant. They keep saying "but the drug doesn't cause that". Well, it does for her. I hope your scan goes well.
0 -
Are there any longtime Faslodex users here who have begun taking IBRANCE as well?
I intend to ask my doctor about this when I see him in a few weeks. Since my mets have been stable/NED on Faslodex and results with the new drug have been so impressive, I would think we should consider it. Any other tack strikes me as gambling on the Faslodex working for a very long time before progression, the timing of which no one can predict. Once my cancer progresses, Faslodex and the option of the combo will no longer be available to me.
Tina
0 -
Tina2 so glad you wrote this. I just started Faslodex and my MO didn't even mention Ibrance. I am going to ask him about this on Tuesday when i see this. How come you can't go back to Faslodex with Ibrance later?
0 -
Tina: if just met with my MD Anerson Onc on Thursday. Since he put me back on Faslodex a year ago, I asked him the combo of Faslodex and Ibance. He said , not yet, Faslodex is making you stable we don't want to change until images change.
0 -
Tina, my thinking is that so long as the med you are on works, stick with it. That said, I am starting to have progression. And I plan to make the next treatment Ibrance, with or without Faslodex.
Next week I discuss with my onc. We're going to try to figure out how to deal with the two little spots I have (up from none six months ago). He may have other ideas and I'll listen to them, but it seems that Ibrance is easier on the body than A/A, which would be next.
You bring up a question I've wondered many times. Usually clinical trials test A versus A+B. Usually A+B is better. BUT. Does A+B last longer than A-->progression-->B? No one ever tests this. It's so hard to know. Often you need overall survival data to determine whether A+B is really better than A-then-B. For Ibrance, we don't yet have those data. Not even from the Phase II trial. I've been waiting and waiting, but all those women with MBC are living a long time (Yeah!!).
0 -
Thanks for your responses.
I understand that one stays on a proven treatment until it no longer works. However, I always thought once a treatment fails, one moves on to the next likely drug, not a combo of the drug that failed and a new drug. Is this not so? That's why I wonder if I can go on the combo now. Since I've been on Faslodex for almost four years, I can't help but feel I may be pushing my luck with it alone.
Tina
0 -
Hi Tina,
You bring up an interesting question. I was on Arimidex for 4 years, and NED. I had a small progression to skin only, and Faslodex was added to Arimidex. There was then talk about dropping the Arimidex and adding Ibrance to the Faslodex (I guessed). Something about jump-starting the anti-hormonal effectiveness in my system. But six months after I started Faslodex, more progression and Ibrance is off the table for now until I can hopefully clean things up with chemo. I'm with you about staying ahead of the game if you can! Problem is we have no clear cut path, and everyone reacts differently to these drugs. But Faslodex may still not have run its course with you! I would certainly discuss it with your doctor.
Wishing you all the very best!
Rose.
0 -
I'm new to Faslodex after taking Femera for 4 years & AA for 16 months. I've had bone mets from the start and on my 6th year, I now have liver mets. Probably the last thing I take b/4 going onto chemo again.
Terri
0 -
Hi ladies,
I just started faslodex yesterday and will start ibrance next week.
Tina and rseman I will be interested in what your oncs say about adding Ibrance. I'm excited about the combo. I will take the lowest dose possible though because I wasn't able to tolerate the A/A and continue to work
0 -
Tina I think it depends on the philosophy of the doctor and of the patient. Some add things and others switch totally. If the meds "mostly work" then maybe adding a little whammy will stop the progression? If there's a major change it's time for something new?
I have zero experience with switching meds. I only have the one experience of choosing the first meds. What I'm on now was chosen when my onc gave me two choices and the relevant references. I read the papers and made a decision. I'm on a combo now.
From here on out I think it's art. Ibrance is only approved for first line therapy. The PFS data from some of the other trials are coming out but there aren't a lot of them. It's so early with this drug. Doctors are using it in all sorts of ways and no one really knows how effective its really going to be.
The thing about Faslodex is that the survival curve (the progression-free-survival curve) is asymptotic. The longer your cancer stays quiescent on Faslodex, the more likely it is to keep working. 50% of women make it 14 months (first line). If you last that long you have a 50% chance of making it to three years. After that you're off the curve from the clinical trial. That's you, my friend. No way to know how long it Faslodex will last.
Treatment philosophy. Can you tell I've been thinking a lot about this lately?
0 -
pajim, I've been thinking about treatment philosophy a lot too. Thinking of it as an art sort of explains my oncs recent behavior. His philosophy apparently is to change meds even if he isn't 100% sure there is progression. (My single rib met was more active on the last PET.) He said he likes to get out in front of things. At my appt a few weeks back he first said faslodex, then left the room and upon return he wanted me to try the A/A combo. When I saw him this week and we agreed I couldn't continue with the A/A he started faslodex. He calls an hour later and adds ibrance which is interesting because he initially said the other oncs had patients who didn't do well with it. (I'm assuming side effects) So it may be the "art" at work that he now wants me to try it at 75 mg. I know he is aggressive and I hope not too much so.
My apologies for repeating what I've posted before; the reference to it being an art really resonated with me.
Being the canvas for experimental art....... Good times. (eye roll and sarcasm)
0 -
Intothewoods - you're doing us all a favour posting this - every little bit of ammo I can get to see Ibrance approved in Canada is a good thing - I am worrying about the faslodex not working and would love to convince somebody (anybody) at my cancer clinic that Ibrance should be available - asking patients to petition the health ministries in each province and territory is a bit much one would think.
0 -
Cathy, I know that this is late, I am very sorry about your brother.
0 -
Has anyone had extreme itching at injection site?
0 -
I am loving this information!! I have a question what does A/A mean? And not only am I having itching at the injection site but on my arms and legs as well
0 -
AA is Aromasin/Afinitor combo - there is a thread for that! Yes, extreme itching time before last - alleviated by using prescription strength hydrocortisone cream prescribed by onc for something else last year (huge tube though) also hear that benedryl cream works too. Also I am allergic to adhesive so if anyone puts an adhesive patch on any wound - yikes!
0 -
208sandy, glad the info may help you!
rseman, A/A is for the combo of afinitor with aromasin. Darn acroynm-itis :-)
0
