Faslodex Girls Thread
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Welcome Ashlyn,
Sorry you have to be here but it sure helps to read those tips from pajim and others experiences on Fas. I have been on it for 3 1/2 years and it took me from progression to NEAD in about 6 months. Added Ibrance and I am "nearly normal" (joke) 4+ years after dx.
Some people say the shots don't hurt, but they always have for me. In my experience, the sore muscle feeling lasts from 2 to 4 days, but is kind of a good sign as it means the drug got to where it's supposed to be.
I had bad nausea after the first few doses, but it only lasted a short time and was gone after the first few months. Hot flashes are another matter.
Personally I think mild exercise is good after the shots. Stretching definitely helps. But be sure NOT to exercise before the injections. I have done this while waiting in the docs office and it has the effect of pumping up the muscle and the shots hurt much more! Duh...
Welcome to the thread. Hope this combo will stop those lung mets in their tracks and you get a good long run on this tx!
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Eye dryness-. I was having issue with dry eyes and other symptoms of dehydration (muscle cramps, etc). I bought a water filter (zenwater) and try to drink 120 oz per day. Yes, that is a lot of water! But eye dryness went away and when I get at least 80-90oz per day mussle cramps do not wake me up anymore. (though I do take a few trips to the bathroom at night! Filtered water is supposed to be better for you...,it does taste better and easier to drink. Another bonus...... fatigue has gotten better!
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I am also having extreme pain in my hip where I get the shots. Been getting them for 2 years and stable (yay)! But the last few times has left the muscle feeling like it is almost separating and starting yesterday and increasing through the night, it has become so painful I can hardly walk! Anybody have similar reaction to the shots?
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Also wanted to add, generally I do very well with Fasoldex. Side effects are minimal and I live a pretty "new" normal life. I have slowed down but in many was that has been a blessing. Very grateful for my doctors and current treatments!
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Is anyone of you ladies anaemic? And does faslodex stopped your haemoglobin from going down further more? Also my mother get's tired easily and has a shortness of breath she she quite often these days, while on faslodex. Anyone similar?
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Hi rainbowlight, I'm not anaemic but I do get tired easily. When I see my oncologist one of the first thing she asks is do I have any shortness of breath. So, ask her oncologist about it. It must be something common if I get asked every month. I'm sure it's not too concerning. Also, I've been on Faslodex since Aug 2017 and I find the side effects change and different ones pop up.
Everyone,
Be kind to yourselves
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Hi Tsu,
Thanks for your info. we sure will do when she have her next visit. I'm afraid that Faslodex may not work for her, since she has bone mets and they are the cause of her low haemoglobin. For the first 4 -5 months on F (she started and of June) the haemoglobin stoped going down, even went up a little bit, but last time when they test her at the beginning of November it went down again. She has lung fibrosis due to radiation and attribute the shortness pff breath and coughing to that too. we made PET scan with showed no lung mets, so they say it's fibrosis. But I'm concern for her anaemia. They say sometimes Faslodex needs 6-7 month to work but I'm worried.
Anyhow, will wait month and do another check up
Rainbow
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Hi all,
I was on Ibrance/Femera trial for 30 cycles and had progression, was put on the alpelisib/fulvestrant trial, but I can't tolerate the alpelisib at all, so just Faslodex/fulvestrant. I've had 3 shots of F so far, the first 2 were pretty good, the last one was so painful, burning as the RN gave it & I had so much pain at the injection sites for about 3 days. I think she did it too fast, I won't let that happen again. Any other tips for me? I will read all 97 pages at some point, but wow, 97 pages!!
thanks! cheers, dee
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Dee, have you tried lifting up the foot on the side you’re getting the shot in? This way the weight shifts to the other leg and your muscle is relaxed. The nurses told me to do this and sure enough it works! Hope it helps
Jill
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The other biggie is to warm the syringes to get them to room temperature. I usually open them once I get to my GP's office and warm them in my armpits. I also spin them between my hands (hard to explain well) in order to mix the viscous suspension. This helps to warm all the contents.
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Thanks for the tips Grrifff & SS, I did warm up the injections in my armpits!! I'm not sure if this RN had ever done it before because she kind of looked at me oddly when I took them out of my sweater! They make you lie down on your side to do the shots so there isn't any weight on the side getting it. I think she was just bad at it because the first 2 doses were fine. It also burned going in on my right side, I told her to stop & then slow it down.
I'm due for another set on the 18th, I will be watching closely.
cheers, dee
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Dee, I had those shots for 16 months and only had one bad one. She did it too far out from the center and I also think it might have gone into the skin instead of muscle. I felt it going all the way down the outside of my thigh/hip area. That whole area was still sore 4 weeks later. All of the nurses I had would wrap the tubes in a hot towel for awhile. They should know to do that imo.
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hello ladies - I recently started taking faslode shots ( completed the loader doses and 2 months on the monthly so far)... I find that my urine become very stinky with a pungent odor after the shots and lasts for a few days..
is this common? Is there anything we can do to alleviate this?
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Utopria,
I just started taking these shots & read that the stinky pee is caused by the castor oil that the shot is administered in. I haven't found it to be too bad, but I've only had 3 shots so far, 4th on Tuesday.
GG
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Yup, stinky pee is the norm. I’ve been on Fas for almost a year and don’t find the smell that bad - biscuity smell to me. I think of it as a sign that all is well.
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hi Utopia - same here - urine smells weird for a couple days. Nothing really one can do but keep drinking H2O
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Hello Ladies, just wondering if anybody has thigh pain-for me it’s one leg then the other and today is both. Starts at hip and goes down to knee. More like an ache. It wakes me in the middle of night too. I’ve been on Faslodex for year and half and seems to me that side effects can change from month to month???
And on another note, Christmas is here and all moms, wives, girlfriends feel the need to have everything perfect. It can’t be with how crappy we feel sometimes, we can’t get overtired and overwhelmed by it all. We have to cut ourselves some slack-“whatever will be will be” and smile when you look at the tree and it’s half decorated(like mine) 😊 It really is is the time of year to be thankful we are all still on this planet and doing pretty good.
Give yourselves a big hug and head to the tub with a bottle of wine 🍷
Always be kind to yourselves
💛💛💛💛💛💛💛💛💛💛
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Hi my partner has started faslodex injection 5 weeks ago and has knocked her about, achy and pain in back, itching and lost of appetite anyone else been through the same situation
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Hi, I have been on Faslodex for a year and a half and have experienced all of those side effects. They seem to change month to month, but sometimes the body aches feel like when you get the flu. Hot bath helps that. Loss of appetite to the point of forcing myself to eat and the itching happened twice. If concerned, look here, pretty sure someone, sometime has had it. Like I said they seem to change month to month. One month the bottom of my feet ached really bad, but that never happened again. If serious, contact oncologist.
Take care
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Hi. I have not experienced the itchiness or loss of appetite but the aches? Most definitely. It is dry consistent with me. For about two days after my injection everything hurts, even my wrists and ankles. I assume it is some type of inflammatory response. My hips are always the worst. I like to think it’s the bone mets receding.
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Has anybody had tailbone pain? Yesterday an hour after I got up it started and was so excruciating, I couldn't walk. It's gone today, but that wasn't fun. I know I have mets on my spine, but last scan didn't show any that far down. I didn’t fall or anything either
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First dx 2000. Lumpectomy radiology tamoxifen Lymph nodes clear Stage 1 IDC.
Recurrence 2014.
Aridimex 1 or 2 years. Quit working
I was on fasoldex and ibrance 2 years when it quit working
Then started fasoldex and afinitor.
Several SE worst being swelled feet and ankles.
Any comments on the swelling? Thanks.
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shygirl18 -- I have been getting faslodex injections since August, and I also had problems with itching. My MO had me start taking claritin 5 days before injection, and continue for 5 days after. I haven't had problems with itching since. I've heard it may also help with bone pain.
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hi!
I’ve been on Faslodex since May in conjunction with Verzenio but unfortunately it’s not working so I’ll be moving on.
One of the few options I have left is Ainitor/Aromisinbut their thread is very discouraging in terms of side effects.. lately I’ve noticed that a few people seem to be having trouble with the Aromisin part of the drug and opt to take Faslodex with Afinitor instead.
I wonder how many of you are doing that and how are you managing the SEs??
Thank you all!!
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Members of the Fanny Pack,
I owe you this information:
In early October I started a thread in the Stage IV forum entitled Visiting Hiatusville for Three Months. In it I describe a visit to my oncologist in which he and I decided I could stop treatment for three months with no foreseeable danger. Check the thread if you're curious about details.
Last week I had scans of my chest, pelvis and abdomen. They indicate no difference between now and three months ago. Long story short: Yesterday my doctor posited I could go three more months without Faslodex if I wanted. He suggested that we (my partner and I) "would be happier going to the movies than coming to see me."
Well, yes.
I will get a chest xray (!) in three months to check for changes and then go back on treatment. It will be interesting to see if there is any improvement in my arthritis and degenerative spine disease in the interim.
Yours,
Tina
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Great news Tina. I did note your news on the other thread but wanted to say that I am so pleased for you. I am in awe of the number of years you have been on this drug and still doing well. Hopefully I can mimic you success.
This leads me to a question of the group. Have any of you experienced diminished kidney function on Faslodex? There are some indications that my kidneys are no longer firing on all cylinders (slight reductions in creatinine/eGFR levels and more frequent need to urinate at night). I don't think it's overly concerning at the moment, although I have not discussed this with my MO, but am wondering what, if anything, I can do about it.
Thanks. Pat
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Interesting you should post that question. Yesterday I was supposed to have CT with contrast of my lungs but when I got there, the technician said my MO didn’t want to take a chance with contrast cuz my kidney number was a little off. Nothing like it was towards the end of my stint on AA but off enough for him to be concerned. I was glad though cuz the only vein, in my hand, is still bruised from my MRIs the week prior. Drinking half your weight in water is what I’ve been trying to do, that is supposed to help with the kidney functioning.
Suzy (Stllivin)
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Yes.I've noted my eGFR and creatinine have been low for a long time, but my oncologist is unconcerned.I assumed it was due to the NSAID I take daily; I never considered Faslodex to be the culprit. My rheumatologist is keeping track of my blood tests, so I am not going to worry about it until she raises an alarm, even though Dr. Google says I should be concerned.
Interestingly enough, I ran into the same issue as you, Suzy, at my last CT. The tech didn't want to give me contrast until he consulted with the radiologist, who said it was okay.
Head-scratching stuff, isn't it?
Tina
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Yes.I've noted my eGFR has been low for a long time, but my oncologist is unconcerned.I assumed it was due to the NSAID I take daily; I never considered Faslodex to be the culprit. My rheumatologist is keeping track of my blood tests, so I am not going to worry about it until she raises an alarm, even though Dr. Google says I should be concerned.
Interestingly enough, I ran into the same issue as you, Suzy, at my last CT. The tech didn't want to give me contrast until he consulted with the radiologist, who said it was okay.
Head-scratching stuff, isn't it?
Tina
(Edited to delete creatinine, which is usually high, not low.)
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Interesting. I'm asking the question as my MO ordered a repeat of the creatinine and EGFR. I just had a full blood panel three weeks ago so wondered what was up (it wasn't mentioned during my visit with my MO at the end of December). It just seemed odd to me as my numbers have not been outrageously low but there is a definite trend. I also did not connect the dots to my need to get up through the night. This has been going on for the last few months but I thought nothing of it (wondering if I was just drinking more fluid than normal) and hadn't mentioned it to my MO.
Another culprit (beyond NSAIDs which I have also been taking on and off) could be the pamidronate that I am on (similar to Xgeva). Oh... and I seem to have CTs up the whazoo since it all began...
I'm not particularly worried but may need to take precautions as I don't want to have to bail on Faslodex. This has been the first lengthy run I have had since being diagnosed stage IV in late 2017. It's such manageable treatment that I hope I can stay on it for a good long time.
Thanks to you both for the response.
Pat
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