Faslodex Girls Thread
Comments
-
wilsie2, thanks for reply. I started Faslodex yesterday, we may need to change name, I got my injections in my thighs, which was a relief cause my hips are already in pain. I am an RN so they let me inject my self while the nurse did other injection. I went slower than her & have hardly any discomfort in that leg, I will make her go slower next time. Slept best I have slept in a long time, had been waiting over a month to get started in clinical trial. Hopefully I will have positive results to report soon.
0 -
I'm sorry you're dealing with that, Sue, that does stink!
Really weird about the bone scan not showing it, too. My understand is like Pam's, that bone scans show all kinds of bone things that aren't all cancer. I think part off the trick is for the radiologist reading it to be able to tell the difference between probable cancer and healing fractures, etc. On my bone scan, there was what looked like a non-met rib I had fractured and also areas that suggested mets and the PET scan confirmed it.
I hope your onc is doing something about that hip and not just leaving it to chance.
0 -
I hesitate asking this, but does anyone on this thread have neuropathy? I noticed odd numbness and tingling in parts of the ring and pinky fingers of both hands almost immediately after my hip replacement surgery two months ago. When I told my surgeon about it on my follow-up visit a month ago, he posited that it might have been caused by a "positioning issue" in the hospital and that it would probably diminish. If it did not, I should let him know. Flash forward another month. It has not diminished and there have been additional periodic tingling and odd "nervy" sensations in my right arm.
When called my surgeon's PA about this the other day, she told me to come in to see the surgeon. Yesterday, when my hip precautions were lifted, I could finally bend and twist to touch my feet and toes for the first time. They're numbish on the right foot. I can't yet reach the right. Eeek!
Since many cancer treatments cause neuropathy, I am concerned that the surgeon may blame Faslodex treatment for this and perhaps not help me. (I have nothing on which to base this terribly unfair conclusion except my own longtime fear of not being heard and helped, which dates back to childhood.) Dr. Google gives no indication of Faslodex being associated with neuropathy. Do any of you have information to the contrary?
Tina (newly neurotic about neuropathy)
0 -
I have been lurking on this thread for a while as my onc is getting ready to put me on the "shots" at the end of June (after scans) so......
About the neuropathy - I have had it since my chemo six years ago - mostly in my feet and ankles I was told if it lasted longer than three months it would be permanent - then two different times I was given Lyrica which works for some people but not for me - it makes me very dopey and the neuropathy remains (as it did for my late DH's diabetic neuropathy) - I've been on a bunch of the AIs, Femara, Arimidex, Aromasin and no new neuropathy - it does sound like it may have happened during surgery - what anaesthetic did they use and does it have se's - after you talk to the surgeon you might want to talk to a PT but pretty sure they can't blame it on an AI though God knows they are the cause of a bunch of se's.
Good Luck! S.
0 -
Tina, did you get any antibiotics? Fluoroquinolones are known to cause neuropathy. I had CIPN from chemo, and then got one of those antibiotics for infected seroma after mastectomy and had immediate worsening of neuropathy within 1 day, by day 2 had no feeling at all in my fingers. Stopped the ciprofloxacin and fingers got better slowly, although it took over 4 years to get better enough I hardly notice except if I type more than 15 minutes at a time. I have only had the one dose of Faslodex, but from what I have read, it should not contribute to neuropathy.
Sue, I got my injections in thighs also and am so glad I did. If my back side hurt as much as the legs did for the first 2 days, I would not have been able to sit or lie down in any position. I have very little muscle mass anywhere, so MO agreed to request nurses to use thigh, and I think going more slowly with the injection next time will be helpful. Thanks for doing the comparative experiment on yourself! Good luck on getting into that trial soon!
0 -
Not really on topic but did anyone catch Marissa Weiss on NPR today.... she was interviewed on The Pulse (talked about this site).0 -
Linda, I was given an antibiotic in the hospital, but have no idea what.
0 -
Tina, I though I'd weigh in that so far no neuropathy from the Faslodex. I did have it with taxol and I know it's no fun at all.
For what it's worth, vitamin b helped a little bit but Cymbalta cleared it right up for me--so much better. I stopped the Cymbalta when I was done with taxol and the pins and needles never came back. The pads of my toes will probably always be numb, but I can live with it as long and I don't have to deal with the itchy electric tingly junk. Hope you find relief soon!
0 -
Oh, and welcome Sandy, hope you have a great run on Faslodex! 20131512, I'll have to google that--this site has been such a blessing for me, I'd like to hear what she has to say
0 -
Tina, no neuropathy here. I do promise, however, that you will eventually be able to reach your right toes. May take a little while and some stretching, but you'll get there.
0 -
Well Faslodex did not stop my progression which was discovered after a lump appeared under the skin on the sternum opposite my breast cancer. It grew rapidly (at first everyone diagnosed it as a cyst) and a biopsy two weeks ago (after 3 injections of Faslodex- on the second of which my lower back went out two days later) showed it to be breast cancer ER positive. So I am back to ER positive after being told I had changed to triple negative in December (lung fluid pathology which I guess can be misleading) and have started again on Xeloda by itself without the Doxataxol. Hope this shrinks things like it did the first time. Bye for now Fanny girls.
0 -
Prosper, so sorry Faslodex punked out on you, that really stinks! Wishing lots of good success with Xeloda and really easy side effects.
0 -
Fare well, Prosper. Sorry you're leaving us, but hope the new treatment does the trick for you. Please check in to let us know how you're doing.
Tina
0 -
Owie! First Faslodex injections today. I literally almost passed out after the first one (had some other health stuff going on too) and then dreaded the second. The nurse was super nice and took at least 3 minutes to slowly push the drug in. I was totally expecting the shots to be in the fat part of my cheeks, but she did them sort of at the top of the cheek/lower back area. Already dreading the shots 2 weeks from now...eek! Fingers crossed it works!
0 -
Brandall, I though the same thing about location and was also surprised that the spot was so high! Hoping it gets better for you and, of course, that it works like a charm for a long time!
0 -
Brandall I'm so sorry! I had shots yesterday -- the slowest push I've had yet (about a minute per side). Very easy with much less bleeding than usual.
I hope the heart issues get straightened out.
0 -
This is a weird question, but does anyone think they smell bad after these shots? When I used to get AC chemo, my whole body put out this smell that was awful. No one else said they could smell it, but I thought it was overwhelming. A sort of burnt metal smell. I felt the same all yesterday after the shots and part of today. Again, my husband says he can't smell it, but I can barely stand myself! I am on a trial, so I suppose it could be the palbociclib too, but my first thought was the faslodex.
0 -
I do think that my urine smells weird-just like it does from the Heparin after chemo.
But I don't think that my whole body smells weird.
0 -
I never noticed a smell, Brandall, hope it dissipates quickly, that sounds really annoying!
This month I'm having pain in the muscle in my thigh that's the same as what I usually get in the injected muscle. I'm wondering if the Faslodex would spread like that or if I just walked into something and promptly forgot about it (I'm thinking either is about as likely!)--anyone else have that happen?
0 -
my injection site will hurt randomly as long as 3 weeks later. Either side.
0 -
Brandall, I get the heavy-metal smell, but in urine. Lasts a few days then goes away until the next time.
I've never noticed it as BO, but of course, aren't the "emitters" the last to know? Definitely a Faslodex side-effect.
Since your husband doesn't smell it, could be you have sensitive internal olfactory senses?
0 -
I get the stinky urine/BO too. Smells kind of like creosote. It fades faster if I really push the liquids the day of and a few days after the infusion. Nobody else in the house notices it, but - man - I sure do.
0 -
Said smelliness was discussed ad noseum on the previous Faslodex thread, in which it was described as a "barnyard" odor. I notice it when I urinate/defecate, sometimes as early as the evening on the day of the injections or as late as three or four days later. The odor usually lasts two or three days. I surmise it arises from the formulation's castor oil excipient being eliminated from the body.
When I mentioned the odor to my nurse, who has been administering these injections since clinical trial days, she said she had never before heard about it. My guess is that patients were too embarrassed to talk about it or perhaps failed to make the connection between being treated with Faslodex and smelling like ol' Bossy's barn.
Tina
0 -
Forgot to add that I've asked my partner if she's noticed this odor. She says she has not.
Tina
0 -
Yesterday was month 53 for me. My appointments have moved from 10:30 to 12:30 so the waiting room is less crowded, and many of the staff have already left for lunch. Who knows why, but both the blood draw and the injections were more painful than normal. This is the first month that I haven't eaten tons of salty popcorn along with my 2 litres of water the night before. Maybe I wasn't as hydrated as usual? The injection sites seem better today which is a good thing since I have a three-hour client meeting and then a car ride to the suburbs. Today my husband and I have sliced out two hours to search for basil plants since not one of my planted seeds became a plant. Would be a shame to have tomatoes [which are going strong] with no basil to serve them with!
*susan*
0 -
As of today I am a Faslodex using member of the Fanny Pack. I read all your words of wisdom a few weeks ago and it came back to me as I was waiting for a newby to draw blood and get the injections ready. Yikes! Be sure the medication has been warmed. Relax the recipient hip as much as possible. Administer it VERY slowly. I think you saved me a lot of pain! I'll be looking for the smelliness over the next few days
I also saw my MO today. He is starting me on Halaven. The CT scan shows a lot of progression in my abdomen as well as ascities, really uncomfortable. Tomorrow I get a port and will have my abdomen drained. Having left the Afinitor/Aromasin combo, my new combo will be Faslodex, Halaven, and Aromasin.
0 -
Danish,
Welcome! Though of course I wish your previous protocol had not failed you. Hope your port insertion goes well tomorrow and that Faslodex, along with its companions, is highly successful for you.
*susan*
0 -
Welcome Danish!
A question for the long-timers on this drug. I feel like I'm getting "creakier" every month. My joints don't hurt or anything, but I'm getting stiffer and "creaky" is the best way to describe it. Mostly first thing in the morning.
I assume it's due to the lack of estrogen over time (as if I was getting much much older quickly), but do you all feel the same way? I've been at this 14 months.
Pam
0 -
Yes! I call it my accelerated aging program. Gentle stretching and staying active seem to provide the most relief.
0 -
Danish, welcome. Hoping the Faslodex will make the ascites subside. I have had as much as 5 liters drained, so I know what you are going through. Keep us updated on your progress. I get my shots today, and have never noticed an odor. Will have to ask DD, as I know she will tell me.
Wilsie
0
