Faslodex Girls Thread
Comments
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Tryn - yes, know about all other steps but the nurse problem is only thing not working.
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Jobur
Yes I'm fairly new about 3 months on it now. I am severely fatigued and most of the time I have little appetite. Not sure its the Faslodex or just the cancer in general. I asked my doctor that question and he said its probably both. Now that it is in so many different spots he said it takes a lot out of your body fighting it. Lots of ladies are pretty much s/e free. Good Luck!Cathy
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I had my first dose on Friday. Oh boy, I think I had worked myself up because after the first shot, I passed out!!! The shot didn't even hurt and it was done and then out I went. My blood pressure dropped and we had to wait 30 minutes before giving me the second shot and made me lay down for that one. What drama!!! I think next time will be better and I'll just lay down.
I have def felt nauseous and tired. But no matter how tired I feel, I have a very difficult time sleeping. I think with the weather warming up my night sweats are picking up.
I go for the second round of double shots next Tuesday and then I am supposed to work a night shift at my job from 5pm-1am.
I really hope this works!!
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Rseman - Yes it sounds like you worked yourself up alright! It should be easier for you now that you know what to expect. If you are getting too many hot flashes and night sweats don't suffer. There are drugs out there that your oncologist can prescribe to help. I am on one right now and for the first time in many years I'm hot flash free! I am waiting not so patiently to see if Faslodex is working for me also. Best of luck!Cathy
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add me to the Faslodex girls...
Just started 2 weeks ago. Just got off taxol.... have been through all of the hormonals in the past 7 years..
Still on perjeta/herceptin.
OMG,,,,,haven't had hot flashes this bad in years..nausea comes and goes.
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Thanks Cathy! I am actually taking Effexor to ease the hot flashes and it seems effective for me. Maybe the hot flashes are on the rise because of the amount of medication I am getting all at once. Fitztwins I have never been on Taxol but know a person who is going to be on it indefinitely and it would seem to me that the Faslodex is a much gentler treatment. I hope that is the case for you!
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Welcome Fitztwins - I agree there are some doozy hot flashes with this tx - not many but woooow! I had one last night at dinner at a friend's house nearly brought me to my knees - also find for a week after shots I am soooooo fatigued but otherwise o.k.
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Does anyone have severe time sleeping at night? Has your energy decreased to point where you are taking naps that you did not do before?
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Roberta2 - I am having trouble getting to sleep but o.k. once there - however after I walk the dog early in the morning - I am back down sleeping for an hour or two and not a nap - a deep sleep! It is most annoying as I never seem to get anything done anymore.
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So I had my second set of shots yesterday. One side didn't hurt but the other? just thinking about it made me shutter.
OUCH
I think about all the crap we endure... to survive...
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Fitz - I gotta tell ya one of my shots hurt like HELL time before last - it was my right side - nurse told me this last time if one is going to hurt it will be on side you "use" e.g. if you are right handed it'll be right side, etc. apparently our muscles are more developed in that side and harder to inject into - BUT that said the nurse had hurt me the time before and this new nurse didn't hurt at all - I couldn't even tell she'd injected so I'm thinking it's the nurse not the patient. I take a half Ativan and a Tylenol Arthritis before every appointment just in case but the day it hurt nothing worked. Hope you're feeling better today and enjoying some beautiful weather.
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Bottoms up, Rseman and Fitz. Welcome to the Fanny Pack! I hope you get a looooooooog run on Faslodex.
I had my umpteenth set of injections today (approaching the four-year mark) and am lumpy and sore. My remedy? Because today is unusually cold for May, I'm sitting in a living room chair under a beloved coverlet, enjoying hot tea and popcorn and thinking about retrieving some cookies I know are stashed atop the refrigerator.
Hey, whatever works! Make it a point to treat yourself to something comforting on injection day, if only a nice, quiet time-out with a book or magazine.
(And cookies.)
Tina
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Yes some shots hurt more than others. I think it depends on the nurse giving them too. I do very well with my regular oncology nurse but the fill in nurses.. no so much. First of all MAKE SURE THEY HAVE WARMED OUTSIDE OF FRIDGE FOR HALF HOUR. If not I put the inside package against skin under shirt/sweater. Also a good tip I was given by my nurse is take 2 (pain meds of your choice) I take Tylenol half hour before shots. And the slower they inject the less pain! Good luck ladies.Cathy
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Rseman, Thinking of you today and hoping your 2nd shots go much easier now that you know what to expect. Maybe getting them lying down will help.
I'm on to 3rd set today, monthly hereafter. Feeling a little anxious this time as my regular onc nurse (who I like and trust) will not be the one giving them this time. Will definitely be checking the package temp!
Tina2, didn't you just get back from Spain? Hope you had a wonderful trip but are glad to be back home too.
Fitz, the nausea I had at first seems to be on the decline. Will see if it increases again after tx today. The hotties have been on the rise again, now back to day and night, pretty much whenever.
Hope the rest of you had a good weekend and are enjoying the day.
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thanks Jobur!!!!! I'm in the room right now
))) good luck to you too. I'm thinking some shopping therapy is warranted after this! Lol.0 -
This morning marked my 1 year of Faslodex treatments, and it almost didn't happen. I had a reaction to the treatment last month, really bad bone pain, shortness of breath, rash on my face. I went for scans after that treatment, and other than an increase in uptake on the T7 vertebrae, everything appeared stable, so my onco thought my body is starting to reject the treatment. Same thing happened to me with Tamoxifen, I was only able to take it for 3 months before my body totally rejected it.
Until last month I had been refusing narcotics, trying to stay off them as long as possible because I still work full time. The pain was so bad last month though that I caved, and now take tylenol w/codeine as needed. It helped immensely with the pain.
It was my understanding that we would do the Faslodex again, but when I got to treatment this morning, they only had me scheduled to have the Xgeva and labs done. I don't see my onco again until the end of June and certainly don't want to be without treatment, so I literally begged them to give me the Faslodex.
Here's hoping I didn't make a mistake in getting it again. So far so good, have the standard post-treatment headache, sore butt and slight nausea - all normal - fingers crossed.
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Hey terri-c, I hope you are feeling ok after your shot.
When I got the in the room today they were ready for me. They made me lay down on a bed with an ice pack on my neck and smelling salts nearby!! It was a bit overkill. I was fine. Poor nurse was probably worse off than I was.
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Rseman, glad to hear things went better today. Bet the nurses are too, but hey you've got to hand it to them for being prepared!
terri-c, Hope all is well with you tonight. I would be scared of going without any treatment for a month too!
My tx went okay today, one cheek seems a little more sore and swollen but as usual, my anxiety turned out to be worse than the reality!
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I'm having a second go on faslodex, much to my surprise. I had it as first line treatment with aromasin after initial diagnosis and had progression on it after three months. Now onc has called it a day for taxol due to worsening neuropathy. He put me on femara with the intention (his) to start on afinator providing that my scans were stable. I asked him if I could have Ibrance but it hasn't been approved in Europe yet. Anyhow he phoned me with results saying that ct scan was stable though bone scan showed some activity and out of the blue said he'd give me a break from chemo and perhaps taxol had killed off the estrogen resistant cancer cells and that maybe we should try faslodex again. I don't know. So I had my first set of injections and have to go to my gp for the second set and from then on I have them in the hospital. I hate this. Waiting for scans in a couple of more months to see if there's progression. Hugs to all xx
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I'm not so sure they actually gave me Faslodex yesterday. The shots didn't really hurt much, and they ALWAYS hurt while getting the injections. I had slight pain at the needlestick, same as you would have after a flu shot. I do not have my typical "lumps" and did not get sore at all. This is a first, as I am always very sore after the shots. I got up this morning and felt completely and totally fine, and I've never felt fine the day after treatment, I'm always really sore and feel kind of crappy.
Anyone else have the shots and feel like they didn't have the shots?
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Yes, I didn't feel the shots the first two times, and this last time I had the se's a couple of days later - the fatigue and slight nausea and also didn't feel the shots at all - in my case it is the nurses doing the shots - I've had three nurses and one of them is just too rough, the other two I can't feel the shots at all - I can't imagine any cancer clinic not giving the med - it doesn't make sense to me.
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Terri-c, lots of time if it weren't for the needles going in, and the smelly urine for a week, I'd never know I had the shots. Some months lumps, some months not.
I'm really sorry for those of you who have trouble. I had a few issues the first two times, but I've been at this more than two years now and my body is used to it.
Rseman, I'm glad it went OK this time.
Welcome to all of you new to the treatment.
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Thinking Faslodex is not working for me. Been a week from .... U know where. Have had some pain before last injections but nothing like I've had this last week. Rib pain, the more I moved around the more pain. Took 2 T#3's (1 didn't do much) and they made me sick. MO gave me something to help my stomach till next visit so I can take them. CT on June 8th will tell the tale.
Then 2 days ago I lost my brother. So I'm in pain more ways than one. Visitation and Funeral to get through yet. He was only 59 and so supportive and caring. Such a great loss to me.
Best of luck ladies.
Cathy
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Oh, Cathy, I am so sorry about your brother. Two of my younger brothers died within two years of each other in the first decade of the 2000s. I still mourn and miss them. The loss of a sibling is a shock and brings a unique kind of sorrow.
With sympathy,
Tina
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Cathy, I'm so sorry. There are no adequate words…
It looks like my relationship with Faslodex is short-lived. Progression in spine and ribs, so on to chemo. I can't say I'll miss Faslodex! Wow, I had every side effect imaginable… weird reaction. I wish all of you the best...
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Dear Fanny Pack Extraordinaire,
As some of you may recall, I was on Faslodex for 62 months. Faslodex got me to NED, and then let me stay there for almost 5 years! With my progression to the bones, it was time to move on, but I moved on a little differently than most. Instead of diving into a new treatment plan, I got on a plane and travelled to France, Spain, and Turkiye after being given one last Faslodex injection so "You have something in your body fighting the cancer." And then I was off. For six glorious weeks.
It has now been 3 weeks since the end of my Faslodex period, and I thought I would write up some of the changes I have felt in my body.
Lowered appetite is a big one. I have lost 8 pounds, some of which I attribute to the amount of walking I did in Europe, and some of which I attribute to eating less. My lower back hurts less, though still gets sore when going uphill [that is normal yes?], and the pockets of fat on the outside of my upper thigh, where the Faslodex goes to hang out, is far less sensitive to the touch. My naps in Europe changed along the way from being something I had to have, to something I might do just for the enjoyment of a siesta. Overall energy levels have definitely gone up. The carpal tunnel, i.e. neuropathy, in my hands has gotten much better. I still have problems with fine motor control, but I haven't woken in the middle of the night due to hand pain in several weeks and doing "normal' things around the house seems possible. I haven't tried sewing or playing the violin so I don't know how much better this all is. I think that my brain is a bit faster now, but to be honest, that could because I feel so much better rested overall. And for the TMI part, though I thought this was a Synthroid thing, my bowel movements are returning to normal from their previous almost-diarrhea to very-diarrhea state. They still happen as soon as the Synthroid hits my stomach first thing in the morning, but the coffee after 30 minutes no longer starts a second round.
I now move onto letrazole and Ibrance [chemo is off the table since the liver shadows were a false positive] and am, as always, hopeful that I will be a good responder once again.
May Faslodex work for each of you for years to come. All the best,
*susan*
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Susan,
I'm selfishly sorry that you're leaving the Fanny Pack behind, but delighted that you have a promising new treatment plan and that your essential optimism has emerged triumphant.
Thanks for your thoughtful observations on the differences since Faslodex began began diminishing in your body. Your insights buttress my growing conviction that I can attribute to it much of the constant lower back pain, sporadic edema and other bothersome issues of the past four years.
("Buttress"--get it?)
Shamelessly, cheekily yours,
Tina
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I did get the buttress! So for you, we have a flying buttress. -Notre Dame, Paris, from a boat.
*susan*
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Ah, oui! We'll always have Paree!
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Cathy - so sorry to hear about your brother - losing a sibling is a hard thing and he was so young. Sending you a hug...
About the T3's - they make me quite ill - so does all codeine so my PCP switched me to Dilaudid - it works like a miracle for me when I need it - maybe you can try it - my PCP says "it's a very clean drug so very minimal se's" - all I know is when I tore my rotator cuff last year it was the only thing that allowed me to sleep through the pain - it's worth a try. I haven't had a lot of se's on Faslodex but I am starting to have things "creep up" - trigger thumbs the last two days, extraordinarily sleepy during the day and very low energy - not terribly hungry - so unlike me but my scans showed some regression so I'll carry on for a while. Perhaps you'll show some regression when you next get scanned - I'll keep my fingers crossed for you.
Susan - good to hear from you and especially happy to hear that you're going to go on Ibrance instead of chemo - also good to see that se's are diminishing. Hope you'll keep visiting this thread...
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