Faslodex Girls Thread
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I'm so happy for those of you doing well on this drug. Results from pet scan still looking like peunomia in lungs but onc thinks as far as tx the faslodex will be good to try and allow my body to heal. She's thinking adding Ibrance later as my body heal. This pneumonia was BaD. Thought I would die and still dealing with it. My thinking now is maybe faslodex is the way to go anyway and get off that nasty chemo. Lol.
Anyway thank you so much for sharing your experiences.
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Welcome Diana! I am so glad you are going on an "easier" drug for now. You deserve to catch a break from chemo for awhile. So far Faslodex has kept me stable and shown small improvement in SUV's after 4 months. Compared to everything you have been through I think you will find the SE's practically non-existent. Like Deanna said, I too feel a little thicker through my middle, and if I am not careful to hydrate a LOT I can get some constipation. Other than that I feel pretty darn good. I'm praying for good scan results for you and that it is not a lung met. And hope we are all hanging in this thread for a very long time. You take care as well!
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Hi ladies. After great scans on 6 rounds of chemo, my mother is being switched to Faslodex now that she is stable again. I normally take her to all of her chemo transfusions so she doesn't have to do the 2 hour drive home after treatment in case she's too fatigued. Just wondering if she will be able to drive after her Faslodex. Is there any dizziness or other symptom immediately after getting it that can make driving dangerous or difficult? Will her bottom be so sore that driving will be an issue immediately after each shot? She enjoys her drives to the cancer center when she goes in for blood work and spends time in the city shopping or having coffee with a friend, so as long as it's safe for her to drive back I won't tag along and cramp her style
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Golden,
It would be surprising if she had any problems driving herself home. Since she lives so far from the treatment center, perhaps, you should join her for her first injection and then when both of you know that she can handle this on her own, she can make the trip on her own enjoying shopping, lunch, seeing friends on her own terms. All the best to your Mom.
*susan*
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The only thing I would suggest is that she walk around for a bit after the injections and maybe stop once along the way home. It will help to get the meds moving around and help to prevent increased pain due to sitting.
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Thanks! I will definitely tag along to the first in the off chance of a reaction. I've given her a list of suggestions from this thread. We figure no matter what SEs, they can't be any worse than the Red Devil chemo -- and she handled that like a rock star!
I think getting up to walk around a bit part way through the long drive home is a good idea. Will mention that as well
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In the Faslodex/Ibrance thread, there were some discussions that Faslodex resulted / contributed to the expansion or disappearance of the waist line. Could it be true? Is it a known SE of Faslodex?? I have been on fanny pact (Fas and Xgeva only) for over 2 years now, my weight did not change too much but I look like pregnant (not possible at my age!) Can I rightfully blame it on Faslodex?
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I would. My body shape changed a lot the first year on Faslodex. Before I carried my extra weight in my thighs. After fas I carry it in my waist and breast areas.
Glad your weight hasn't changed!! (I'm not so disciplined)
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cling -- YES!!! I still weigh exactly the same -- 116, give or take a pound -- BUT I am now the not-so-happy owner of a true post-menopause waist (or lack thereof) -- something I never had prior to Faslodex. And I get the 5-months pregnant bloat some nights on top of it, thanks to Ibrance. I've also lost 4" in height since my metastatic re-dx, which is equally depressing. But I'm still very grateful for Faslodex (and Ibrance) -- in spite of these frustrating SEs.
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cling, Yes blame it on Faslodex!! I have the same thing. Not much weight gain but a belly that I hate and my MO confirmed that many of his patients have it as well. I swear I look PG too....nice to know there are others that have this. I've lost height too. Are we having fun yet?
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I've got the Faslodex belly too!!
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"Only" 5 lbs heavier but count me in on the Fas big belly. Yuck.
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Wow, I checked the official page of SE, it missed such common "Fas Prego" syndrome!! However, I wouldn't mind to be a Fas Prego, as long as Faslodex continues to hold the MBC at bay! It has been such an easy treatment on other parts of my body😄!!
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Fas belly here, too!
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Moi aussi: a big belly, which I did not have before treatment. I assume our bodies are fighting estrogen deprivation by adding more fat, which, of course, contains estrogen.
As long as the Faslodex is reducing more estrogen than the fat is producing, fine. But what happens if...?
Anyone who knows more about this process is welcome to "weigh" in on my theory.
Tina
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Hi everyone
I'm reading about the "belly" pregnant look. Oh my. I'm 63. Looking pregnant? Yikes. Well as long as this helps. Been off treatments for 8 weeks. Still have pneumonia in lungs from March 1 but preying faslodex will slow the cancer down. Sounds like it's working for you all. 👍
Today is my first loading shot. 💉 Hope not too painful. 😱
Diana.
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Diana, just follow the "Absolute Musts"at the top of this thread.
Bottoms up!
Tina
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Diana, yes, please be sure to read the "Absolute Musts" in the original post above, and don't be afraid to speak up to be sure injections are done this way! I go to a very busy office here -- in fact, I've wondered if you might go to the same one -- and some of the lab techs do it great, but others have needed a bit of coaching. Don't be afraid to speak up if you have any questions or concerns. It can save you a sore bottom! Good luck!!! I'll pray that your body will love Faslodex as it quickly attacks those mbc cells! Deanna
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Is the faslodex belly/weight gain/loss of waist the same or worse than what an aromatase inhibitor does?
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Shetland, it's been worse for me. I didn't have this w/Anastrazole, but I wasn't taking Ibrance with it either, and there could be some sort of synergistic thing going on w/the Ibrance. I just feel the thicker waistline is from Faslodex partly b'cuz others have attributed it to that, and it makes sense due to its strong effect on estrogen.
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thanks for info. Going to read all of it.
Right. I sure don't want a sore bottom. That made me chuckle.
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Shetland, I don't know; I have not taken an AI. My onc put me on Faslodex when I was diagnosed with mets.
Tina
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I had no [weight/belly shape] problem with the AI which I took alone for two months. Nor tamoxifen for three years. Definitely Faslodex.
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Tina,
The way the Faslodex is supposed to work three ways. First is to deactivate estrogen receptors in our cells, and where that fails it mangle the receptors so that estrogen will not bind and there THAT fails, it occupies the receptor space itself. (Which is much the way Chantix works for nicotine addiction.) My onc explained that I could have a flood of estrogen in my body and that it would not matter because no cell in my body would uptake the estrogen. So our fat is just fat, no matter how much estrogen it might produce. We just flush or something. but cells do not use it.
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Goodbye Girl,
Of course! Thanks. I always understood the receptor mangling bit, but did not take it far enough to realize that any new estrogen produced still could not bind. Duh.
So fat is fat and that is that. Good. One less thing to feel guilty about.
However I'm left with this question: If Faslodex completely destroys all estrogen receptors, preventing the uptake of estrogen the cancer requires to grow, why then does Faslodex eventually fail?
Tina
Addendum: Never mind answering this. It's a rhetorical wail. I know that the damned cancer will rally from any estrogen deprivation to grow again--- cells dividing and multiplying and taking over. The real question, as always, is why and when.
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Well. Had first loading shots yesterday. The nurse said don't look at shot till we are done. I did everything as mentioned to help hardest was it did take a long time to finish the shot. I am so happy we got started on this.my pneumonia is still in my lungs and I have another month for scan to rule out mets and/or let the stuff in my lungs No chemo or anything that can mess with my blood counts etc. this shot was the first Tx since end of feb and my blood work is not looking good in the kidney department. And liver enzymes are up. So I hope faslodex can get in there and do its job. Thanks Goodbye Girl on how this works. I just wonder how fast it starts working.
Now that's a HUGE needle. 💉💉💉💉Everyone take care and may faslodex do its job for all of us. I don't even care about SE s. As long as it works.
💐💐😎
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Tina, I'm always happy to speculate. I'd guess at two possible reasons Faslodex [eventually. . .] fails.
One is from a talk I heard at the MBC conference two years ago. The theory is that the cancer cells create more and more estrogen receptors. Eventually they make so many that faslodex cannot stop them all. Correlation to this theory is that is why estrogen sometimes works when all the anti-estrogen therapies fail. The cancer cells have so many estrogen receptors that when fed estrogen they can't handle it and "blow up". The first part of the theory seems good to me. Other part I don't know. [I'm not a scientist]
Second reason is that not all cancer cells are ER+. So you have some cells which don't need estrogen to grow. Eventually these might come to dominate, and the cancer grows. That would maybe be the reason cancers mutate from ER+ to ER-? That percentage of ER positivity could be why faslodex works longer for some women than others? (Now that's a stretch).
I try not to look at that needle. . .
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Hello All,
I think that all the hormonal therapies eventually fail because the cancer cell can mutate to grow without estrogen binding to it's receptor (ER). When estrogen binds to ER it causes a cascade of signaling in the cell - multiple pathways, quite complicated. This signaling cascade can activate gene transcription which results in cell functions, one of which is cell growth. Sometimes a pathway can become "constituatively active" meaning that some protein in the pathway gets "turned on" and the signal gets transmitted and cell growth happens without step one which is receptor binding. This can happen because the cancer cells are constantly mutating. So you could have estrogen receptors on your cancer cells = ER+, but if the cells can grow without estrogen binding to the receptor, then blocking estrogen from binding, eliminating production of estrogen, or degrading the estrogen receptor would have no effect on those cells growth.
Of course, if all the ER+ cells die and only ER- cells are left, then hormonal therapy would fail then too. My guess is that this happens less often.
Never ever look at the needle!!
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Diana, You got your first loading shots out of the way! ...... and glad it went well. Hope your pneumonia clears up soon.
Kim, Thanks for the explanation. I got a BIG hug from my MO this morning as today marks my 5th year on Faslodex. I have progression but it is slow. He has not had another patient do as well this long. So there is hope out there to continue on this drug for all of us.
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I'm reading these success stories and am so happy for those of you doing so well. Lindalou 5 years and I believe 4 for Tina. None of my chemos worked even a year. Letrozole for almost two years and my mets end of that we're life threatening and once moved me into taxol which pretty much saved me. It's been chemo since 2012. Let's liver kidneys none I'll be happy with any kind of reduction. Depending what happens onc wants to add Ibrance. My pneumonia is holding things up. Boo. But at least I hope faslodex can slow things down.
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