Faslodex Girls Thread
Comments
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Danish, that sounds encouraging. Enjoy the new baby, that is such a happy event for all. Wilsie
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No problems with Faslodex so far. I do think he jabbed a vein on this last one though. :-(
Just found out I have mets to the brain, so my focus will be there for now. Radiation starts mañana. Here's to hoping I get smarter! ;-)
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sky,
Really hate to hear about your new mets location. I would guess that this will be the focus, as you say. All the best with the radiation. I hope it makes you smarter and knocks those nasty mets on their ears.
*susan*
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Danish, congrats on the new baby! I can honestly say that my granddaughter is the best medicine I have! She was born just after my dx. She is such a joy, she makes me smile, and gives me so much to look forward to. I thank God every day for the blessing :-)Wilsie, I have been getting Faslodex for almost a year. Sometimes there is more soreness than usual. On those occasions, I use a heating pad that I warm in the microwave. I don't know why, but the warm moist heat eases the discomfort. You are probably already over it by now, but maybe you could try it the next time it happens.
Sky, I am so sorry to hear about your mets. I pray that the radiation works immediately and completely. Gentle Hugs
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Sky, what a shock. I join the group in wishing you well with the radiation. You seem plenty smart already, so look out, world!
Tina
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Just wondering......does anyone else suffer from diahrea the first two weeks after shots? I was up all night again, and am trying to re hydrate but unable to eat. I was told it may be a side effect, but have never heard anyone else talk about it. Any thoughts or comments? Wilsie
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I haven't, but I know everyone reacts differently. I had that problem with Aromasin. I'm so sorry, as I know that can be problematic. Hope you get relief soon!
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Thanks for your response, Sandi. I am on Aromacin, also, but have been on it 2 years. Maybe that's the problem.
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Wilsie, I have not experienced diarrhea after treatments, but that is one of the symptoms that my onco insists that I report if it happens. It wouldn't hurt to call your doctor about this. Maybe they can get you some relief, and prevent dehydration and other problems, especially because you are unable to eat.
Hope you feel better soon!
Birdlady
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Willsie and bird lady, It is so fun having a baby girl in the house. My daughter and husband are living with us while they build a new house. My husband and I are both loving it. They also have a 2 year old boy who is precious! Willsie, I am mostly constipated from the Halaven.
Sky, I'm so sorry to hear about your brain mets. How did you find out about them? I always wonder because I never get scanned there.
Finished Rads last Tues. And got my Halaven yesterday. Today is my steroid high, tomorrow not so much!
Wishing everyone well on their treatments! MaryAnne
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Hi Susan, Bird, Tina and Danish! Thank you for your positive thoughts. I found out about the brain mets because I asked my Doc for a brain MRI. My tumor markers had been climbing steadily and I figured there was something we were missing, or not seeing. I actually hoped to rule it out. No such luck. Had first of 5 zaps today. Just living one day at a time. Today.
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Hello everyone,
I am a Faslodex girl since monday. I am very hopeful with this drug after four months of weekly taxol which my oncologist had to stop as she was afraid of permanent nerve damage. Two days down and my bum is sooo sore.. a small price to pay for hope. Looking forward to getting to know you all.
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Hi everyone!
I just finished reading all the posts on this thread from beginning til the end and added as a "favorite". I have had three Faslodex shots and was put on Femara at the same time. I have been on Zometa for about five years. I also do some energy therapy....thats new. BUT the exciting piece is that my TMs went from 800 something to 500 something! Fast responder I guess but I was so excited because the mets in my spine were all over the place ( four vertebra..including C1 and a spot on my skull) and the L1 vertebra fractured which is how I found out about the mets. Painful and awful experience but it got my attention and my MO has been on the warpath since. I also have mets to my hips and a couple of ribs-but all bones so far. Couldn't be on the trial with the genetic component because I take Celexa and they have had some cardiac complications with the new med and all SSRIs. Bummed me out but with the double hit of Femara and Faslodex maybe I will get some good time. When I took tamoxifen and arimidex I hit such a dreadful depression we chose the celexa over the trial. Happily, I have had no depressive issues with the Femara or the Faslodex. I love whoever came up with "fanny pack"! And the song was funny too. Good luck to us all!!
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Good morning tigre,
We have almost the same profile. Just noticed that and wanted to give you an extra shout out. My butt was less sore when they injected slowly and higher on my hip. After four shots, we finally found a good way for me. you will too, I'm sure. bye for now.
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Welcome to the Fanny Pack, Tigre and Valerie. You will find great information and support in this forum.
Not to mention a few smart a--es such as yours truly, who owns up to "Fanny Pack" and "The Opposite of Limber" song.
Bottoms up, gals!
Tina
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Welcome Tigre and Valerie! Tigre, make sure they warm up the shots. I do it myself while the Zometa drips.
Skylotus, I'm so sorry to hear about the brain mets. Sounds like they are zapping them right out of you -- I hope they are successful.
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Whoever wants info about Faslodex injections, be sure to read the topic posted at the top. I think it saved my butt!
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hi Pajim! Thank you, me too! ;-)
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So, here I sit, slugging water. I am on my second litre since 5, trying to puff up my veins for tomorrow's blood draw and to minimize those post-injection issues. This is the 55th set of injections. I know that I am lucky that Faslodex is working so well, but I am a little tired of backing into my treatments! Doesn't matter. I will put on my smile [but no slap] and head to the hospital in the morning.
Now, I have to go "pee" once again. :-)
*susan*
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Susan,
Didn't John Masefield write a famous poem about that very thing?
" I must go down to go pee again, for the call of the running tide
Is a wild call and a clear call that cannot be denied."
Or something like that. ;-)
Tina
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Hi Ladies,
Like to let you know that I will be starting Faslodex next week. I am a bit scared since I did not do well with the Tamox and Femera, hope the Faslo will as a maintenance drug keep me NED for a long time.
Good luck to you all, I think I will post here a bit more in the future
Carol
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Thanks for welcoming me. Glad I read about those strange smells! I've got a mushroomy, loamy smell. Worse when I sweat and the pee has got the same smell. But thankfully I can stop grilling my husband saying things like " If I did smell would you tell me?" And then of course not believing him. Poor guy. Told him it was a side effect...just shook his head
.Such great response Susan! I'll pray for the same for us all!
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I had my first Faslodex shot today. The shots weren't too bad as the nurse did warmed up the Faslodex. It reminded of getting a yellow fever injection for a trip to Africa many years ago except the yellow fever shot was given in the arm as opposed to the butt. Too early to tell if there will be any side effects from the injection site.
Welcome to Tigre55 and Valerie - Good luck
Skylotus - Stay positive -
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thank you for the welcome. I think it will take a few shots to get the temperature and speed right.
Valeria, that is incredible. We do have the exact same profile, except my mets are also to the lung and liver besides the bones. I am due to have a knee replacement in the near future, just have decide when.
Danish - jeg er ogsa dansk
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Tina, I leave all poem and lyric references to you. I will be responsible for all Mahler, Mozart, and Brahms requirements of the Fanny Pack.
Welcome to all our new members. Yes, I hope that all of you get as many months as I have. Someone mentioned this on a different thread. May we all be outliers.
*susan*
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Welcome, Carol. Be sure to check out the tips at the beginning of this thread. They'll help!
Tina
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I'll be joining the "Fanny Pack" next month. The oncologist is adding Faslodex to Arimidex... happy, happy, joy, joy! I'd better read those tips too...
Rose.
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Welcome to all the new Fanny pack members. There are so many here with good information and suggestions. Pajim, I never thought of warming my own while the Zometa infusion is going! I am definitely asking if I can do that next month!Skylotus, I am so glad you pushed for more answers when you knew something was being missed. You are in my thoughts every day, and may the rads zap those mets!
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I have been on Faslodex since June2013 (one year) and a few months ago started to have hip pain and lower back pain. MO ordered PET, MRI and bone scan. Nothing new - other mets in the spine are stable. PT didn't help. At present I have increased my pain meds. The MO says that she has never seen this kind of side effects with Faslodex. I don't know what else to do. The Orthopedic surgeon says that I have 'active spots' on my spine and he cannot do anything for me except prescribe narcotics for pain (which I can't tolerate).
I was wondering if anyone else has this kind of pain due to Faslodex? Any suggestions? I don't think the MO will stop Faslodex since everything is stable since one year.
Desi.
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Dear Desi,
I don't think I can help, pain is probably not for the same reason but same place.... so I can sympathize. I have bone mets in spine and hips and I do a one day "off" one day "on" schedule. I rest one day and do stuff the next. I am taking femara and foslodex and one piece I am certainly grateful for is that since the faslodex my tumor markers have dropped 300 points. Sooooooo I guess I just work on acceptance and taking care of myself . I also find that meditation and acupuncture help a lot with pain though it takes a lot of time , I just have to take it. One med that people take that isn't a narcotic but it works like one....it is an opiod (narcotic like) is Tramadol. It doesn't get you high but it works. I have taken it withTylenol. I hope we both figure out a way for a good quality of life......its a lot to do with the emotional response to all this craziness....at least for me!
Be well sisters!
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