Faslodex Girls Thread
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Susan - Sorry to hear of your progression, however Faslodex was awesome to you for four years. I hopeXeloda is as kind to you.
I had my second set of injections on Thursday and I am good with needles but oh man my one side was so painful and extremely sore now. The RN that gave them to me she must have "twinged" something possibly a nerve. I have a question. Do these shots give anyone else a funky smell, I think from urine for first couple days?
Cathy
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Tryn2, yes. A "barnyard" and "mushroomy" fragrance in urine was discussed at some length on the earlier Faslodex thread. Some injectees notice a funky odor for a few days after the shots, others do not.
Tina
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Hi Roses Toeses and Sandilee, Have my sad face on here... But thinking positive thoughts that the Ibrannce will kick the buggers. Iam still hanging in there with my Faslodex txs. Please send an update. Hugs to you both. Peg
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Thanks Tina2 - Thanks.. nice to know it is quite normal.Cathy
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Faslodex second loading dose. Has anyone had very low back pain? My back has been this way since first dose.
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No Roberta but shots hurt right to hip.Cathy
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Hi Roberta Have you tried asking the nurses to warm up the faslodex before they do the injection? Also, it should be done very slowly. When I first started I had terrible back pain to the point where I was down for four to five days and suffered with mild pain the rest of the month. After they started warming the syringe, it went away! I find I have had to insist that they do it (in a heating pad) every time there is a new nurse. Worked for me - I hope that it works for you!
Susan Ann
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Just came back from Faslodex shots - and onc appt. first one after three months on Faslodex and scan and bloodwork and things are good - some regression and tm's trending down - I am thrilled! Bought new dogwalking shoes to celebrate!
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WTG Sandy !!! Congrats.Cathy
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Sandy,
Excellent news! Enjoy the shoes!
Tina0 -
Just had my very first Faslodex shot today. I started on Arimidex when I was first DXed June 2013 and had decent results for almost a year, then went to Aromisin/Affinitor combo for 7 months beginning August 2014. They didn't work as well as my tumor markers kept inching up, and finally my last PET scan the other week showed some hot spots again in my bones and a few lymph nodes "in the belly" as my dr. said. He says they are not in the stomach, but behind it. So today I begin the shots. I have read of the possible SEs on this thread, and am hoping I won't have any/many. Is there any advice for me regarding this drug? I am hoping for a few years on this but with my not so good history on the other hormonals, I'm not counting on anything. The next step will be Xeloda but I really hope to hold off the chemos as long as I can.
Any advice about Faslodex is appreciated. I tried to read as much as I can on this thread but it's pretty long and I'm really tired today.
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Welcome Wandering,I have had two sets of injections of Faslodex and am due Thursday for my third set. The only side effect that I have had is the sore bruised injection site and hurts right down to my hip. I was told to take something for pain before the shots and I keep taking it for first couple or 3 days. Maybe worse for me as I have some arthritis in hips too. Good Luck with it! Oh yes lets not forget the funky odour in urine for first while after.
Cathy
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At the very beginning of this thread there are hints on how to handle your Faslodex shots - that's what most of us used when we started.
Tryn2 - I too have arthritis in hips and must say the shots don't help it - I take Tylenol Arthritis (only 1 because I am drug sensitive) and have found that Claritin works as well (I take it with the Tylenol) - I have started to have hot flashes (the worst I have ever known) and I notice that I am getting quite tired but napping has become my new hobby and I rest in between activities.
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hi!
I have been getting two 250 Faslodex shots and one xgeva shot for the last 17 mo. After the first 6 mo I started feeling short of breath. This has gotten much worse over the last five months. My PCP has ordered tests to rule out problems with heart and lungs. I feel this is a cumulative effect from the Faslodex. Is anyone else having this problem? I used to zip around from morning til night but now I can't even walk across the room. Can't see my oncologist as he is on vacation for the next 3 weeks. All my CA markers are down and all other blood work is normal.
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It's day 2 after my first Faslodex shots. I did okay. I got one in each cheek, but not really on the cheek, more up towards the back, and to the sides. Almost my hip area, the fatty part of each. I've noticed an unpleasant odor and I've read that some have experienced that. I'm taking Ibuprofen for the pain and using a heating pad too.
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I was on arimidex for one year after lumpectomy and 4 weeks of high dose rad. They found liver mets and switched me to tamoxifen. I asked my onc after the mets dx about surgery but got the standard once its in your blood stream nothing can be done. So after a year on tamoxifen my liver mets which had shrunk began to grow. Not a lot-tumor was only 2 inches. My oncologist said since we've been watching you for 2 yrs with this liver mets and you have no other mets( confirmed by PET) lets see if a surgeon will remove it . In the meantime we started Faslodex and lo and behold the surgeon said sure lets remove that tumor. Removed-negative margins and now recovering. Was wondering why I was taking so long to recover from the surgery-granted its major surgery but i get so tired so easily. Just had my last loading dose-get sore butt but didn't think I had any other SE's. Lot less hot flashes than tamoxifen but I feel better now after reading the info here. And yes you get that smelly urine-thought I had a UTI after having a catheter after surgery but urine dipstick was negative. Thank you guys-didn't want to read the literature on faslodex cause sometimes you think you have all those side effects
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Is anyone else experiencing what I'm going to dub "Faslodex Fog?"
Symptoms in recent months: poor concentration/focus, making weird mistakes in handwriting and numbers, low energy. All of these were foreign to my experience until the past year.
Tina
P.S. And annoying short-memory issues about small things. (So far nothing serious, but bothersome stuff like "Did I water that plant just now?")
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Tina, I've had short term memory issues for a while now. Not to mention the poor concentration and focus. I chalk them up to the extreme lack of estrogen in my body. But I don't have energy problems or problems with my handwriting.
Tomorrow I go for what must be round #26.
Wanderingspirit, the first page should contain almost everything you need to know. Reading all 40 pages of this thread is not recommended.
Welcome to all you taking Fas for the first couple of times! May it do wonders for you. I found that the side-effects were more odd the first couple of rounds, but have diminished over time.
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Getting dressed for a gala event, I just opened the bureau drawer in which I keep most of my jewelry. Lying inside were two wadded-up Kleenex. Who knows what distraction led me to put them there.
Occasional incidents like this are starting to freak me out.
Tina
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Thanks, I've read where the SE's are listed, but it doesn't list all the possible SE's. I've read about others once I began scrolling through all these posts. I wish the possible SE's could be updated to include other things like the horrible smell, the bruising, and anything else.
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If you want possible se's perhaps try WebMD and check it out - they list every kind of se for every kind of medicine and they are well respected in the medical field.
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I have all sorts of side effects, including that fog you talk about, Tina. In my case, I'm hiding my jewelry and can't remember where I've hid it! I've only been on Faslodex for six months but I'm taking Arimidex too, so maybe that's why I'm so screwed up! I also have the lower back pain you describe, Roberta. And nausea. And neuropathy in legs and feet. I'm only 50, but i feel like a batty old woman. Yikes!
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Tina, It's terribly frightening when your mind doesn't work the way it used to. I totally get it. The freakouts come and go.
Sometimes I think my mind is getting worse (this morning I couldn't remember the name of the nurse I really like who I saw just yesterday), but then I accomplish some bit of tricky thinking (figuring out a bridge hand last night) and feel better.
My onc says I'm not imagining things -- this does happen. These days I keep a to-do list handy. With prompting, the neural pathways work just fine.
Assuming this is a side-effect of Faslodex, I've decided to stand on the square that "the alternative [that is to say not taking this drug anymore] is worse". It helps me not sweat the small stuff.
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Sap the estrogen out of the brain and you get brain fog. I had it with Arimidex worse than with the Faslodex. But I do think that your brain accommodates after awhile so hang in. I played a lot of tourniment type Bridge but backed off for awhile. Lights on, no one home. Listening to the rest of you makes me feel normal. Thank you. This months SE is nausea. Thought I had left that one behind.
This BC site sure does help to keep one from feeling quite so alone and compairing SE and fears helps a body feel "normal".
Mary
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I've had neuropathy since my taxotere 7 years ago and now it's way worse - just since the Faslodex - no nausea but tremendous flatulence, I am under orders to stay on a high fibre diet but right now I am simply unable to go out in the mornings because of this latest se - what next?
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Today marked my 48th Faslodex treatment.
(Butt who's counting?)
Tina
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Ah Tina - good for you!!
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Congrats, Tina! 48 is a great accomplishment.
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Congrats Tina! Hoping it works for me. Was told yesterday that my bone scan shows that it has now spread to bones. Its now both lungs, liver, and spine and both hips. Chemo will be next. Hope this buys me some stable time!Cathy
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Cathy - hate to hear this news - keeping fingers crossed that Faslodex will work for you. Sending a hug, S.
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