Faslodex Girls Thread
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I finished my 3rd loading dose of faslodex about 3 weeks ago. I'm supposed to start the monthly dose in Aug. I don' think I can handle faslodex anymore..
The joint pain is unbearable and and complety lost my appetite. I do nothing but sleep all day and night.
Last week I had the worst flu virus and ended up in the hospital for fluids. I have not felt well at all.
Terri
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Terri,
Sorry you have been having such a rough time lately. Were you feeling better before starting Faslodex? What will your next tx options be if you quit Fas? Will you be having scans or TMs any time soon so you would know if it's working for you or not?
It seems like my se's were different when I was getting the loading doses than what they are now, but it can be so hard to tell what pain is from what, se's, cancer, or something else. I had a lot of nausea after the loading doses, but now am mainly fighting hot flashes and hip pain. Thought the hip was from mets, but after my good scan I have to think it's an se.
Hope things take a turn for the better for you soon.
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Terri, is the Xgeva new as well? That "could" be the cause of the joint pain. The fatigue could be from Fas. I suppose it's possible that the once a month will be better, but I somehow doubt it. The reason they give loading doses is to bring up the blood level. That stays up now.
I'm sorry you're having such a hard time. If this treatment isn't for you, then it's time to find something else. "To may you feel better" is one of my oncologist's stated reasons for switching therapy. This certainly qualifies.
Pam
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Hi all, is anyone on Faslodex and Femara? How are you finding the SEs?
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Hi Aoibheann, I am on both and have been for 2.5 years now. I have very little trouble. Some hot flashes, the usual memory issues, thinning hair and a few things that are shot-related (stinking urine, etc.). Basically "menopausal symptoms". In other words, nothing I can't ignore with a to-do list.
I've noticed from this thread that I either at one extreme or part of a silent group. I'm in my 40s, and this is my first MBC treatment. That may be why I have so few side effects. I took tamoxifen before this and it's a step up but not so much different.
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Hi Pajim, I'm delighted to hear that you've been stable for 2.5 years and that it's a 'doable' tx for you. I hope you have a good long run on it. Are you still able to do your normal ordinary everyday things? It's mad that there is such a variation in reactions to these drugs though. I think I read that another lady (Tina?) has been on faslodex for 5 years and is doing v. well but she's on faslodex alone. Personally I am still floored with fatigue and have increased pains and aches and stiffness, as well as the hot flushes, thinning hair etc. Not sure if it's these drugs or chemo reactions still in my system or the cancer. Still it's more bearable than taxol and if it works for a long time (fingers crossed) I'll take the bad days as long as there are more good days than bad.
I am curious though. Firstly, why combine hormonal treatments at all initially instead of adding them on as needed thus prolonging options for hormonal treatment and then secondly, why combinine faslodex with femara as it seems to be usually combined with aromasin or equally why one AI rather than another. Fas and aromasin was my first tx and I had progression on it after three months. I'm also curious to know if anyone else was px faslodex + AI, had progression, changed to chemo, became stable and was put back on faslodex + different AI. I've been on this new combo for three months now and have scans on Aug 11th. Scanxiety is rising!
Hugs x
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Aoibheann,
It's four--not five--years for me. Susan_01443 was the Five-Year Wonder until recent progression.
Yes, I'm doing very well on only Faslodex except for some SEs. When I asked my oncologist about adding Ibrance, he said he would if I progressed. He prefaced this with, "Ibrance is not a walk in the park, you know."
So--so far, so good.
Tina
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Hi Tina, apologies for my mistake. Fantastic news though that you're four years down the road with Faslodex and doing well. Love to hear good news. Stay well
Hugs x
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I have moved from an urban center to the Rhone-Alps! Thanks for the change of address! I will enjoy this lifestyle even more! But seriously, yes, five years, very few side effects. I miss Faslodex very, very much.
http://postal-codes.findthedata.com/l/213865/01443...
Now I must return from my French fantasy. It was a lovely visit. *susan*
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Ah, numbers--never my strong suit. Sorry, Susan! However, the Rhone -Alps--wow! Coulda been worse!
Tina
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Aoibheann, back in the Stage 3 days, when I had chemo, I was most annoyed that the doctors couldn't tell me what the side effects were going to be. It took me months to realize that is because they didn't know! Every woman is different. It's not really a matter of luck I don't think, but how our individual bodies respond to things.
I work full time, play golf, basically do all the things I did three years ago. The only 'accommodation' is that my boss takes into account the fact I don't remember anything anymore.
There is a story behind the reason I am taking Fas + AI as initial treatment. Back 2.5 years ago my onc said, well, usually we give just the AI. BUT, you've been on tamoxifen and progressed (another long story but I was probably Stage IV at the beginning and we didn't know it). I was given the choice to have them both. There had been two studies published comparing letrozole alone versus Faslodex and letrozole for first line MBC therapy. One (American in the NEJM) said overall survival advantage for the combination. One (European, J Clin Oncol) said the two regimens were equivalent. I went home and read both the papers. Then we had a debate. I thought the level of evidence behind the New England Journal paper was better and "went for it".
Femara and Aromasin are both Aromatase inhibitors and are given interchangeably (so far as I know). They have a different mechanism than Faslodex, so the idea is giving both attacks the estrogen from two sides.
I appreciate your wishes for a long run. I've already had one. Median PFS in that NEJM paper was 15 months. I admire Susan and Tina for being on the asymptote of that Kaplan-Meier curve. KM are those curves you see in scientific papers which compare two treatments.
Edited to make sense. Sorry -- when I get tired I take short cuts.
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Pajim, I appreciate all the info. It baffles me why this blooming disease follows such a different path in each individual. My life has changed utterly. I wish things were more predictible, yet even SEs seem to vary widely. I can't tell the difference between cancer aches and pains and SEs. I have spent the past week more or less crawling from bed to chair. Zero energy, yet last month I had much more days that I could do stuff. Actually now that I think of it we had sunny weather last month whereas this month has been colder and wetter. I'm like a lizard, I warm up and do more on sunny days!
Have you seen any study that relates to my tx? I was stage iv from the start, first line tx was Faslodex and Aromasin, scans showed progression after 3 months, second line tx. chemo Taxol, stable for 2 years 4mths on that, then third line (current) tx. back to Faslodex and Femara (letrozole). I know it's not as hard on the system as chemo so fingers crossed it'll work this time but I'm feeling so weary and sore I'm scared it means progression. But then I guess that is the new permanent state of mind for us all.
I hope you get many years+ on this esp as it is kind to your system
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Aoibheann, the treatment of metastatic breast cancer is mostly art, not science. [I can't tell you how much that annoys me]. There is no "right" answer. Each doc has their own philosophy, each patient has their own philosophy. Those two things together decide what treatment each woman gets. Or rather which order they get them in.
I'm still deciding my philosophy.
The trials (yo, actual data!!) that exist for MBC seem to fall into two categories (maybe 3). One is brand new [chemo-type] drugs which get tried in women who are almost at the end. The second is drugs that are tried for first or second line therapy. Those tend to be new hormonals or new HER blockers.
I'm so sorry you're having such trouble. It seems a cheat that I'm doing fine and you (there are many!) are having so much trouble. It makes me feel horrible. I struggle with the idea that it is OK I'm doing OK.
It seems that even though you are ER+, your cancer is generally hormone resistant. The fact that Taxol worked so long means it may work again. I remember the side-effects of that -- ugh. I hope for you this time the mutated estrogen receptors do the job.
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:: making this a PM ::
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I haven't posted for awhile, but I keep up with the messages. I was stable on arimidex for 4 years, then slight progression. I was given the choice to take tamoxifen or Faslodex. Once seemed to be leaning toward faslodex,so I agreed. If faslodex fails she will order tamoxifen. I have been stable (partial remission) for 1 year.
Something looked ? On last scan, so another scan in September to double check. i did not take tamoxifen after my original dx in 1987. I could have, just opted not too and onc agreed. I wonder if things would be different had I taken the other choice. Hugs and prayers to all of us. Nancy
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Pajim, please don't feel bad that your treatment is working! That's the golden ticket we're all praying for. It gives me hope that some day I'll hit on a magic drug myself before it's too late. As Fitz says, 'enjoy every sandwich'..
But it is so crazy that this is what I am reduced to - 'magical' thinking. Anyway at least I can read and ask people here who are on the actual drugs and learn from them whether what I am going through are 'normal' SEs, and what to expect next etc.
Onc said I could go back on Taxol as tx hadn't failed, it just got too debilitating. He hopes it has killed the hormone resistant cells?! Is this science? I ask why not test cells, he says wait and see. So scans on the 11th and I hope and pray the hormonals are working. He says the longer one stays on hormonals the longer one's prognosis. It feels like russian roulette. Then when I'm feeling crap I don't care.
Take care, pajim, and please don't feel horrible about feeling well. Hugs xx
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I get my round of Faslodex shots Thursday. I'm been on Faslodex since February 2015 and all is good. My question is, and I sure hope someone can answer this, does taking antibiotics negate or interact with taking Faslodex shots? I may be having a possible molar pulled, possibly tomorrow. I know my dentist will want me to take a round of antibiotics. It will be so close to taking my Faslodex shots the following day. Can someone answer this question? Also I have been on Xgeva shots until May of 2014. I suffered with ONJ last November 2014. Wondering if it would be too soon for a tooth pull. I am trying to avoid a possible root canal along with a crown. Thanks
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Naturegirl2, I've been treated with Faslodex for four years. I took antibiotics as standard procedure before and after my hip replacement surgery over a year ago. It was not an issue. I can't answer your question about Xgeva.
Tina
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I have a question. If you switched to Faslodex after being on an A/I that was failing you (in my case Anastrazole), do you recall how long it took to get any noticeable pain relief? I'm starting Faslodex tomorrow (then Ibrance within the next few days), but my pain level has gone in three weeks from barely an issue to extremely bad. I'm still waiting for the results of scans (CT & bone) done last Friday, and would not be surprised if I have a fractured rib. In the mean time, I'm wondering if you noticed Faslodex kicking in quickly vis-a-vis any pain you were having around the time you started it. Deanna
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Deanna, Good to hear from you but sorry that you are having such pain issues. For me my treatment with the AI started after the "main event" show of A/C, Taxol, then thr AI's. Arimidex first followed by a rotation of others....Femara etc. All of them were very gentle at first but after a few months...big hand'wrist pain. In contrast...two yrs ago with my MBC do Faslodex was started. I never had any pain whatsoever just perhaps some increase in tiredness. I am still on a 3 week Tx schedule with both the Faslodex and Herceptin....going on 2 and one half years so far so good. Here's hoping that your Tx will be very successful with very few side effects. Hugs, Pegg
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Thanks Tina2 for your response. At least I can settle down with the antibiotic issue then, if needed.
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Is this for Faslodex 2015? I started today. Will start Ibrance in a few days as well.
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Christina, welcome! You're in the right place.
Deanna, I can't help with the pain issue either. I'd had back surgery and radiation just before I started Faslodex, but they'd taken out all the tumor they could find in my spine. I wasn't having cancer pain, just surgery pain. I'm told Faslodex takes a while to ramp up. That's why they give the loading doses -- to get the blood levels up as soon as possible.
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Started Faslodex yesterday and couldn't believe how happy I was to be getting shot up with something new! I'm already looking forward to my next dose! And for anyone wondering about those big needles... I didn't look, but they were no big deal. Much less painful than I'd imagined. After doing all the other stuff I knew to watch for from the original post above (thank you, pajim!), the lab tech who gave me mine said she was going to pinch my butt cheeks really hard, which would distract me from the shot itself. Don't know if that's been mentioned within the past 40+ pages, but it worked great for me.
Pegg and pajim... thank you both for the input on my question re. pain. It must be mental, but except for one really painful rib area (waiting on scan results now), I already feel better for having ditched the Anastrazole that was clearly no longer working for me. Our minds can be so powerful!
Like cjanet, I'm also adding Ibrance, which should be arriving today. Should I dive right in or wait a few days to let my body adjust to the Faslodex???
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Deanna, my ass is SORE today!! My Ibrance was rejected by insurance this morning, so the doc needs to follow up on prior auth. They better get that straightened out, I already left them a message nad about to call my insurance company.
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Cristina, did whoever injected your Faslodex follow the steps outlined in pajim's original post (i.e. warming the med, taking your weight off the side being injected, injecting very slowly, and massaging the area to be sure the product was well dispersed? Evidently, those things make a difference.
And bummer about the Ibrance, but I'm sure they'll get it straightened out. I was also warned it might get rejected and need to be resubmitted. And if your butt hurts, maybe it's working out for the best that you don't start Ibrance right away -- just to be sure you don't have any ongoing issues with Faslodex, which I'm sure you won't, but maybe best to let your butt pain settle down.
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I can tell you from last month that SLOW really matters. I still have the lumps and I was pretty sore for the first time.
Saturday (next dose) I plan to have a chat with the nurse, whomever he or she might be.
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Cristina, Sorry about the sore ass. For me the pain during the shots and soreness afterward has been a little different each time. Hope you are able to get the Ibrance approved, but even if not, some gals on this thread have gotten to NED and stayed there for years on Fas alone as 1st line tx.
Deanna, I'm happy for you that your 1st round of shots went so well! Hope it continues to be that way. I have never had the nurse pinch me or massage afterwards, but if the pinch helps, so much the better! I was able to talk to my mo over the phone yesterday and she is going to order my Ibrance but said not to take it until my next Fas injection and monthly visit. Personally I prefer to add 1 thing at a time so I can better tell what se's are from what tx.
Pajim, Wow, you still have lumps 3 weeks later? Yuck. Hope a chat with the nurse makes it go better this time. And please do not feel guilty over successful treatment! That is what most of wish for both ourselves and our mbc sisters.
Ditto to you Susan if you happen to pop back in. I'm so sorry anyone here would pm you with anything but good wishes.
After my June shots, I got both numb and sore on the outside of my left cheek and down the outside of that thigh. It has gotten a little better, but has never felt normal since. Anyone have anything similar?
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jobur, that's odd about your June shot. Did it feel like maybe they hit a nerve?
Well I have a horrible headache today. Not sure if it's the Faslodex or upping my pain meds, which I had to yesterday. Are headaches a common SE for Faslodex?
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Deanna,
I did have some very mild headaches when I first started. but mainly a lot of nausea. I see headache listed as top se on rxlist.com. Both passed after the 1st couple shots. Hope the pain meds are helping you and your headache goes away soon too.
Yes, I think I have some kind of nerve issue on my left side that got exacerbated by that shot. Not terribly painful, just kind of irritating. That is also the leg I have trouble with when walking. Have seen a couple of neurologists, no help.
Jo
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