Faslodex Girls Thread
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Radiation first, then I started with Faslodex, Femara, Ibrance and Xgeva. After a year he stopped Ibrance! After 2+ stopped Femara. In July issues with jaw and stopped Xgeva, perhaps temporarily.
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Hi again, so many versions of this journey! I just had my 3rd loading dose of faslodex and I'm ready to be on the once a month schedule! So far the only side effects are the achey hips and pelvis, which is quite sore and noticeable all the time, and also the hot flashes seem a bit more severe though not more frequent. I am also on Xgeva, which I think is leading to the achey joints in my knees as well- It was kind of nice only taking faslodex for a month (starting the Ibrance tonight) so that I could get a sense of what effects it was having on me. So hard to tell when on several meds!
I keep pushing myself to exercise, yoga and walking for now. It does feel good even when I want to be lazy. Good for the body, mind, and soul. Beautiful sunset tonight and a young girl doing beautiful cartwheels!
take care all.
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Hey everyone,
I was wondering if anyone has had the same experience I had yesterday with my injections of Faslodex. I have been taking Faslodex for two years. Yesterday my first shot was fine. On the second my chest started to burn and I began cough. I felt very strange. I sat down after because I was dizzy. My vitals were fine. I stayed until the nurse ran me off about 30 minutes later. Of course at the cancer center I go to I am the only person who has ever had this happen. I am also the only person to say Faslodex causes them to have a sore throat. I am doubtful that I am the only one in the village. Have any of you had this burning in your chest ? Sore throat? Are you always told "Nope, no one else has that side effect" ? Thank you. Best to all of you.
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Hi
I am on Faslodex and Ibrance 3rd cycle, I have PET Scan coming up in a week, am wondering what to expect ? Do these drugs start impacting in 3 months ?
Any experience if mets reduce in 3 months ? Hope I see regression 😔
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Hi Male, Faslodex can take awhile longer than the AIs to show that its working,apparently like 6-9 months to show its full strength, so a stable scan at this early point would be good news too. At 6-9 months of Faslodex treatment there is about a 50% reduction in the levels of the estrogen receptor, which is about the maximum response, whereas the oral ARV-471 PROTAC (now in clinical trials) reduces ER levels by around 90%. So, if this approach works, there are even stronger versions coming down the pipeline.
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Faslodex is a 28 days cycle, so one needs to count the day you take the injection as day one and the next dose day 28 or the day you take is counted as day 0 and you start calculating 28th day from the next day ?
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Malebreastc,
I have been on faslodex twice -- currently in my second round. I didn't count anything. My doc's office simply scheduled the shots four weeks apart. I also think there is a VERY little bit of play in the number of days between shots. I would discuss with your doctor, but in my experience, if they are giving this injection, they are pretty good about setting you up for your shots.
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MaleBreastC, I get mine every four weeks at my Monday doc appointments. It may be 30 days or 29.
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Hi,
I have been on Faslodex since May 2020 (in combination with Herceptin) and I am doing quite well. I have been stable since Autumn 2019.
However, about 10 - 14 days after the Faslodex shots, - side effects seem to emerge: myalgia (back and legs), hot flashes, a bit nauseous and slight headache. Then in the fourth week the SEs have subsided. Anyone else experiencing this ?
Take care all 🌼
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Meja,
Yes. I have back, buttock and leg pain from a few days after the injections. It worsens with time and is often bad enough to wake me from sleep. It begins to diminish about a week before the next injections, then starts all over again! I don't know if it's caused by the medication or the injection technique, but it's certainly a drag.
Tina
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Meja, no sideceffects from faslodex whatsoever.
from the xgeva, yikes. Woe is me.
Gailmary
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Tina, I am guessing it may be both. I have the localised injection site SEs, but they are not too bad, lasting only a few days. The more generalised SE's must be the medication, maybe the lower oestrogen levels ?
Gailmary, I guess we just all react differently to various medication. I am also on Xgeva, which I didn't mention, because I have no SEs from that injection (for me it is the easy one).
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I am on Ibrance, XGEVA and Faslodex. I have significant side effects 24/7. As some of the SEs from these drugs seem to be the same, I am not completely sure which one is caused by which drug or if multiple drugs are making the side effect worse. I do think that Falsodex's effect on estrogen causes amplified arthritis symptoms. I also think that the injection site can play an effect as well. In early 2019 I had my first Faslodex shot and I started having lower back pain and sciatic nerve pain on my right side that I had never experienced before. It progressed to within a few months of starting Faslodex to the point where it became debilitating. They changed from giving me the shots from above my butt to giving in the sides. I think that helped but the damage was already done. 2019 and 2020 were very painful years for me. I had PT and went to a spine specialist without relief and and pretty much surgery was the next option. I was not sure that they really understood what was going on and not sure surgery would help a problem brought on by medication. I have been able to figure out some lifestyle modifications that have at least made the pain mostly tolerable.
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Cowgal, I am sorry to hear that you have also been experiencing pain and still do. But glad to hear that lifestyle changes have helped.
I think you probably are right, that Faslodex effects estrogen receptors, which can cause amplified arthritis symptoms. Managing side effects can be tedious at times. I am still trying to work out a balance exercise-wise, - exercise helps, but overdoing it costs body aches in my back, hips and legs. But also mentally it helps me to keep moving.0 -
Sad news for us stage 4ers hoping to be able to switch to an oral SERD. Cure-iuos posted this today: https://community.breastcancer.org/forum/8/topics/...
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Thanks Cowgal,
This is sad news, that seems to close the door for a switch from Faslodex injections to SERD tablets in a foreseeable future.
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Thank you, cowgal. It’s sad to know I won’t be switching to an oral, but I’m on Faslodex and Xeloda, and my tumor markers have dropped since I’ve been on the combo from 374 to 105. I’m grateful and will keep at it with Faslodex
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I originally posted the following on the Clinical Trials thread in response to Cure-ious referencing the failed SERDs trials:
Cure-ious, that is a huge bummer, indeed. Thanks for posting. Apparently there will be no oral SERD in my future anytime soon. My only consolation is that I can still salute fellow members of the Fasodex Fanny Pack with our time-honored motto: Bottoms Up!
Tina
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Tina - bottoms up right back at ya! 😜
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I have some news to share.
I completed 5 cycles of Fulvestrant+Ibrance and got my Pet scan report today, The report sats complete to near complete resolution of metabolic activity in all regions, complete resolution in liver and lungs, complete resolution of metabolic activity in the spine with lesions showing healing response.
Overall summary says, near complete metabolic response and no new lesion seen..
This is my first scan post treatment and am hoping that it is good enough
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malebreastc-that is great news!! I was wondering if anyone has had headaches on falsodex? I had my loading doses and about a week later started with an unrelenting headache. Nothing helps I’ve had all the otc drugs,all the migraine drugs,steroids and mri with contrast of brain(clear).it’s been 3 weeks!!! My onc can not figure out what is going on. The only thing we can think of is the falsodex I’ve been on treatment for 9 years and had barely had a headache it’s impacting my life. Ugh
Kristin
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MaleBreastC, that is great news. It does wonders for us when the medication gives us some good quality of life. Thank you for the update.
PartyofFive, I’m so sorry you’re not able to figure out the headaches. Could it be coming from maybe your neck, a pinched nerve? I hope they can find the issue
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partyoffive I am not sure if I get it correctly, you have been on Faslodex for 9 years ? And have started having headaches recently ? This may not me related to Faslodex in that case
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Hi malebreastc
No I’ve been on Falsodex for two months. I did the 6 shot loading doses-2 shots every two weeks for 6 weeks. I just meant I’ve been on multiple meds/treatments for 9 years and none of it caused a headache. I’m not someone who got in my previous life before cancer so this is all new to me. I have tried everything and I mean everything so it’s starting to get me down. The headaches started about a week after my last loading dose of falsodex three weeks ago. They were so bad I asked for a brain mri sure that after 9 years of mbc it was in my brain-nope it was clear even had contrast. Though he doesn’t think it could be lepto my onc is going to do a spinal tap just to rule it out. I’m so tired of waking up with head pain and brain fog. Hope everyone has a good weekend!
Kristi
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Hi Kristi
I had been on a combination of
Examestane and Everolomis and developed severe headaches stabbing pains had brain scans ..no problem but i did develop pnumemotis had lung fill with fluid.
And in intensive care for a week
So stopped drug combo
New combo of faslodex and ribociclib working well
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Hi
I need to either prepone my next dose by 3 days or postpone by 7 days due to unavoidable reasons. Anyone has any such experience on what is more advisable ? Prepone or Postpone
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MaleBreastC, my insurance only covers every 28 days, so if your insurance is like that, I would postpone.
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malebc, when covid hit dr skipped a dose completely. So 2 months between shots. Dr wasn't concerned as it has a good half life. But then I have a lazy cancer.
Gailmary
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Thank you kbl and gailmary for your valued inputs
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Please keep us posted on what you decide
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