Faslodex Girls Thread 2014

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  • Mzmerz
    Mzmerz Member Posts: 1,054
    edited March 2017

    I had the second loading dose yesterday and I am still sore from the 1st time. I got out of bed this morning and about keeled over from the soreness. I hate to think what I will feel like in 2 weeks, after my next set of shots. I'm trying to imagine being on these double butt shots for several years. So far the only side effects I have are the sore spots, nausea (it's better this time than the last time) and lack of an appetite.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2017

    Mamerz, I'm sorry we have to endure this. I'm slightly ahead of you in the schedule, being two weeks past loading dose #3. I find myself looking forward to the next two weeks of hardly any pain. I think it will be better when we are only getting shots once a month. My nurse thinks so, too. She recommends massaging the area the day of the shots, which is counter-intuitive, but I did it after dose #3 and for whatever reason the pain did not last as long that time. Ibuprofen and a warm shower reduced my pain a lot during the worst days; maybe that would help you too. Yeah, the prospect of years is daunting, and yet years are what we hope for. What a strange situation! Just take it one dose at a time, I guess.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited March 2017

    I just posted this on the Faslodex and Ibrance site, but in case it helps someone on this site, here it is again. Is it bad form to post the same thing in more than one string??

    Girls, this may be total coincidence. However, it may be worth reporting. At the suggestion of several on the site, I starting taking the generic version of Claritin (loratadine) two days before receiving my first shot of Xgeva. I received my final loading dose of Faslodex just before the Xgeva. In the past, the Faslodex has given me a very sore fanny for 48 hrs or so. In this case, I didn't have any soreness at all after receiving the shots. I wonder whether this was luck or the Claritin/loratadine? And, I have had no pain at all with the Xgeva so far.....thanks so much for the Claritin suggestions! My onc had never heard of that and made notes.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2017

    Hmm, Claritin is an anti-allergy med, right? If some of the Fas pain is a reaction to the castor oil, that could be an explanation. Let us know what happens next time. They told me the pain I have is simply because of the large volume of stuff being injected. But I did have a large red patch and itching after dose #2, which I suspect is a reaction to the castor oil. Really, they couldn't come up with a better delivery system?

    P.S. I think the way you quoted yourself and explained is fine. What drives me crazy is when a scared newbie starts two or more threads with the same question, because it fragments the responses, making it difficult for us to follow and help.

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  • jobur
    jobur Member Posts: 726
    edited March 2017

    Joyner and Shetland,

    Hmm, interesting thought on the Claritin relieving a reaction to the castor oil. Sorry for being a dummy, but is that a prescription or otc drug?  If part of the pain is due to a reaction to castor oil, maybe it would also explain why shots seem to be less painful as time goes on. Lots of ifs there, but always great to hear a new idea, and if it helps for whatever reason, we'll just be glad, right? Shots tomorrow for me, and wake for MIL in the afternoon. It's going to be a long day...

    Joyner, I don't think anyone minds if you post the same info on more than one thread. I always read Fas posts, but can't always keep up with the Ibrance threads, so you reach different audiences. No worries.

    Shetland, will you try some Claritin before next round of Fas? You'll make a great guinea pig! (Just kidding.)

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    Squeeeeeee! Squeeeeeee! (guinea pig sound) Hmm, I don't think I will, Jobur. I sure have enjoyed having a whole month between shots! Such a long time without a sore derriere. Not as many hot flashes as I had with letrozole. Here's an odd side effect: I get cramps on the bottom of my feet if I extend them too much, and I have to flex them to stop the cramp. Anyone else? It's interesting because I got calf cramps on tamoxifen.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2017

    Shetland, YES, YES, YES, YES to those foot cramps. I also get them in my hands once in a while. The affected foot or hand sometimes looks like it is bent in a strange way. My big toe will be extended to the side away from the other toes , and some fingers will be bent down towards my palm while another could be sticking up. I have to flex my foot or put weight on it and massage my hand to get relief. I have tried hydrating more, but have seen no change. I did have the same experience while on Arimidex, but onky for a short time.

    Lynne

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  • Lindalou
    Lindalou Member Posts: 647
    edited April 2017

    Count me in as a foot/leg cramper. Especially in the middle of the night. Checked my magnesium level and it was fine, and I drink water all day long. No difference. MO finally told me that the cramping is a SE of Fas post marketing. Aren't we lucky??

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  • pajim
    pajim Member Posts: 2,785
    edited April 2017

    Raising my hand on having had foot cramps at night. Never thought of them as being a SE. Figured I needed to eat more bananas or exercise more.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2017

    Me too -- horrible foot and legs cramps with Faslodex+Ibrance. Thought it was the Ibrance all along. Off Faslodex and on Xeloda now for 2 weeks, and still dealing w/them, although not quite as severe.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited April 2017

    Cramps!I thought it was just me and assumed they were from aging or arthritis. I've had sporadic foot and hand cramps over the years, and recently some surprisingly painful cramps in my thighs at night.

    Tina


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  • cling
    cling Member Posts: 333
    edited April 2017

    Ahhha! That explained my increased toe cramps!i had toe cramps occasionally before, but after 3 + years on Fas, the frequencies increased, plus started getting lower leg cramps. Wonder if the cramps will move upward or increase in frequency?

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  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2017

    The cramps seem to be an se of all estrogen sucking drugs as far as I can see - I am taking a very low dose of magnesium at night even though my mag levels tested as normal and the cramping is much less - taking too much magnesium can lead to severe diarrhea so my pcp warned me re dosage - talk to your pharmacist or dr and see what they suggest.

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  • Faith-840
    Faith-840 Member Posts: 995
    edited April 2017

    I've got lots of foot and calf cramps but I'm not on Faslodex. I think it's the femara or any AI. If you use chelated magnesium, it shouldn't cause any diarrhea. I take it every night but still have the cramping , although I'm sleeping better.

    Faith (in the future)

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited April 2017

    Hello. I have just been diagnosed with bone mets. My mo said he is going to see if my onsurance will cover falslodex and ibrance. I wanted to introduce myself as I will hopefully be starting it April 20 th. Im do glad yall are here with your experienced. Thank

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    So sorry to hear about the bone mets, melmcbee. You've already been through a lot. Good news is you can live a pretty normal life on Faslodex and Ibrance. Hang out with us.

    Wow, that's nine of us already with foot cramps! I told my onc about them and she nodded knowingly. She said they used to prescribe quinine for such cramps, but it had unsafe side effects such as heart problems. But she said I could try tonic water, which has a small amount of quinine in it. Please run it by your doctor if you decide to try this. I may try it if the cramps start to interfere with dancing. So far it is mostly in bed and once at yoga class. It seems that I have more hot flashes the first few days after the shots --Anyone else? -- so now I am wondering if the day of our Faslodex cycle makes any difference in the number of foot cramps. Inquiring minds want to know.

    Had my fourth set of shots. Asked for my now-favorite nurse again. Much less post-injection pain! She gives them fairly low and toward my sides, and that interferes less with sleeping and sitting than other locations. Yay! I am doing this. I'm so badass ...Ha ha!


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  • Lindalou
    Lindalou Member Posts: 647
    edited April 2017

    Hello everyone,

    Well, I'm off Faslodex and on to Ibrance and Femara as my CT showed too much progression. I hope you all get as many years as I did on Faslodex and I wish all of you the best. Keep fighting Ladies.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited April 2017

    Very sorry to learn this, Lindalou. May Ibrance and Femara be the super team that beats back the progression.

    Hang tough. The Fanny Pack is rooting for you!

    Tina

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    Lindalou, how long were you on Faslodex? Best wishes on your new combo.

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  • Lindalou
    Lindalou Member Posts: 647
    edited April 2017

    Shetland, I was on 6 years. Never had new progression, but had very slow hardly measurable progression for the last 2 years, some radiologists called it stable. I do not regret changing up meds then as I had a decent QOL. Now of course is a different story for me and time to change.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2017

    Lindalou, Six years? That is great. I hope you get at least that long from Femera and Ibrance.

    Lynne

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  • girlwithacurl
    girlwithacurl Member Posts: 86
    edited April 2017

    I've been getting my shots lying down and the pain from injection isn't too bad, but the lumps on both sides are huge! They've been there a week.

    Shetland, make sure your tonic water doesn't have high fructose corn syrup--last time I had tonic it caused pain from inflammation.


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    Linda, QOL should still be good on Ibrance and letrozole. You get a week off each cycle, and you have dosage options. And no shots!

    Go for it, 50sgirl and Linda -- show us six years and more on Ibrance!

    Girlwithacurl, they will put that corn syrup junk in anything, won't they? Don't worry. I'm a big label reader. So far, I don't think I need the tonic water, but it's nice to know there is something to try if needed.

    Do you mean the lump of castor oil sitting there in your bun? Nurse Wonderful encouraged me to massage the area the day of the shots to move that stuff out. It is counterintuitive to do that when it is sore, but I think it helps. I also decided to lie down for the shots. I put a folded blanket under my abdomen to help me relax the glut muscles even more, and turn my thigh and toes in also. Worked that out with help from a friend who knows all about muscles and stuff.

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  • girlwithacurl
    girlwithacurl Member Posts: 86
    edited April 2017

    Is that what those lumps are? Castor oil? There is a performance artist named Orlan who put bumps in her forehead and I think of her everytime I feel my glute bumps (I feel like they need a better name).

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    How about "Glumps"?

    The drug is in castor oil. Nice, huh? The castor oil lump I have experienced is a large smooth lump that diminishes over a few days. It is easy to feel because of my aforementioned lack of real estate. That is what I massage after the shots. Some long-term Faslodex girls here have developed fanny lumps that I think may not be the same as the lump of castor oil. Can any long-termers chime in?

    I read in the article cited below that "In a small study...146 of 251 intended gluteal IM [intramuscular] injections (58%) administered by nurses were deemed successful by pelvic CT scan, while 105 (42%) were associated with subcutaneous nodules, indicating subcutaneous placement." (page 34) In other words, skin lumps can happen if the shot isn't done right.

    http://media.oncologynurseadvisor.com/documents/44...


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  • girlwithacurl
    girlwithacurl Member Posts: 86
    edited April 2017

    I like glumps. So far this month's glumps have lasted a week. I guess I'd better get massaging!

    The nurses have told me how hard this shot is to give. Someday there will be a pill!

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Ladies, question for you all. I have a unilateral tongue swelling that's been going on for about 2 weeks. Brain scan is clear although MRI will still be done to further investigate. I read on Fas prescribing information that less than 1% of users have angioedema/swelling in any organ or part of the body. Does this sound familiar? Thoughts? I started Fas on 17 Feb and that swelling issue started about 2 weeks ago.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2017

    LindaE, I have no experience with tongue swelling from Faslodex, so my comment is probably of no help at all, but here it is, just in case. I am allergic to ibuprofen. My initial symptoms are quite similar to what you are experiencing right now. My tongue was swollen and my speech was somewhat slurred because of that swelling. I didn't realize at first what caused the issue, and, of course, I did not take ibuprofen on a daily basis, so those symptoms subsided. I took the medication again much later, and in addition to those original symptoms, I also had numbness and swelling of my entire face and looked like someone had used my face as a punching bag. I am telling you this only to point out the fact that medications can, in fact, cause the issues you are seeing. Although my experience may not be relevant, the sentence below could be. I copied the information below from the faslodex website:

    "Symptoms of an allergic reaction to FASLODEX may include: itching; swelling of your face, lips, tongue, or throat;"

    Lynne

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  • Tina2
    Tina2 Member Posts: 2,943
    edited April 2017

    Linda,

    I'm not a doctor, but I think it's extremely unlikely that your tongue is swollen due to Faslodex, although I suppose you might be allergic to it. The swelling is more likely to be caused by something else you've ingested. Are you on any new medication besides Faslodex? Are you using a new toothpaste or mouthwash? Do you have any other symptoms of an allergic reaction?

    If i were you, I'd just ask my oncologist or nurse.

    Tina

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited April 2017

    The slightest bit of dehydration makes my tongue swell. Happened yesterday.

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