Faslodex Girls Thread
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I started Faslodex February 3, 2020. I am also on XGEVA, and Ibrance. I have some pain in my hips and also in the general area that the Faslodex shots are given and I think the pain is from the Faslodex. I walk a little bit after I get the Faslodex injections and also rub the area to get it circulated around. The pain doesn't start until maybe a week or more after the injection I think. I think the pain is muscular. I realize that it could be from the XGEVA or the Ibrance as well. I just wondered for those that have been on Faslodex for a while, did you notice that some of the side effects from it leveled off or dropped after you had been on it for a certain amount of time or did it continue to get worse? Was there anything that you found that helped with the soreness?
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Hi Cowgal.
I think it is more likely to be the Xgeva. Until recently I was on a bisphosphimate (same idea) and was extremely achy for several days with each treatment. It eased after a few months. Hang in there
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Quick question-
Has anyone developed issues with their legs (muscles, I assume) while on Faslodex? I am a long term user (about 4 1/2 years) and within the past few months my legs have gotten weaker and weaker. It is very difficult to climb just a few stairs and if I squat down, I am unable to get up without help. It is overall a weakness and pain in both legs from top to bottom and it is always present. I'm wondering if the leg muscles are being affected by the long term injections into the buttock muscles??
Your thoughts and comments are very much appreciated.
Angie
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Hi Angie.
I have not been on Faslodex for as lengthy a period but have been on it for almost 2 1/2 years. I can't say that I have encountered that. Have you discussed this with your MO? When was your last scan?
I suppose it's possible that there could be an impact on the nerves to the legs but I would be more concerned about the potential of bone mets in the spine impinging on the nerves. I had issues with sciatica due to bone mets - radiation took care of it. Leg weakness would be something to flag with your care team if you haven't already done so.
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I have noticed that when I am on an anti-estrogen, I am more prone to injury and less able to build strength. Last time I was on one I got really bad trochanter bursitis brought on by intensified dance practice. My physical therapist and I theorized that the drugs lowered my tolerance; i.e. something that might have been ok before was too hard on me with the drug. Right now I am having a lot of pain in my glutes, and I am trying to tease apart what is due to diving into gardening activities that use previously underworked muscles, my normal yoga class but now on Faslodex, and the shots themselves giving me pre-existing inflammation. Maybe it is all three. I was in pretty good shape on Xeloda, and now bam, pain (muscle, bursa, whatever) again. I guess I have to go back to trying to find the balance between being too sedentary and overdoing it. Part of what the PT had me do was to first rest and allow healing, then ease back in slowly and also build the muscles that support the problem area. She said to do several short exercise or practice sessions rather than one long one. Ice after. She also did massage to tight areas. I can't really visit the physical therapist right now, can I?
I don't know how my experience may or may not be similar to yours, cowgal and Angie.
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I have been on it for 9 years but started having spasms, arthralgia for the last 4 years. Then came new mets on L3 so MO stopped it. Now down to Femara to protect my immunity.
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Hello Everyone!
I am new to this forum although I have looked at it many times after my MBC diagnosis in 2017. Scans showed progression on letrozole and ibrance after 2.3 years. And so the next targeted therapy, piqray (apleisib) in combination with fulvestrant will start next month. I just started fulvestrant injections last month (3 the first month) and will start the monthly injections next Friday. I am having horrible side effects from it, insomnia, weakness, joint/bone pain, nausea and am wondering if things might improve after a few months? Also I am concerned that I may have gotten one of the injections in the sciatic nerve as I am having lots of pain in that area. Any advise greatly appreciated.
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Dear ginmill,
I've been on faslodex since last July, and Ibrance with it since last August. I haven't minded the faslodex shots, because I had really had it with letrozole with SEs.
Make sure you read the stuff at the beginning of the discussion. Those are all good tips, and things that I follow. I also take an antihistamine for day before, day of, and day after. Can't remember if that's posted or if I read it somewhere else. Some folks like to lay down for the shots -- I don't. I stand leaning on the bed in my nurse's office, with all weight off of the leg getting the shot. I also told her the first time that I tend to get sciatic pain in my one leg, so she's very careful where she injects in that leg, and I've been fine. Make sure you report on that to your nurse. Also, if you have any burning at all during the injection, speak up because they can slow down the rate of injection. Finally, my nurse gives me ice packs to use on my ride home, and I do that every time. I also make sure I "walk it out" the day of the shot. I haven't had your other issues (insomnia or nausea, for example) but perhaps others can weigh in on those.
Good luck. I really don't mind the shots, and I think they are actually much easier to deal with than the letrozole. You might still have some letrozole in your system, and that could be making things worse? I can't remember how long letrozole stays in there, but this should become more tolerable over time.
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Thanks, BenJen,
I and my doc are hoping the side effects will ease. I do use ice packs once I get home but I will make sure to take some zyrtec for a few days before and after. Thanks for responding. I actually didn't mind the letrozole.
All the best.
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I have a 3 hour drive home so last time I got the shots I walked around the parking lot 3 times, rubbing the injection sites. I probably looked like I was practicing a new runway walk. Certainly reduced pain at the sites for the next few days.
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Ice did not help me and may have made matters worse. They warm the shots before injection specifically so the serum will be less thick and viscous and will flow more easily. So it seems to me that if you then put ice on the area, you are re-thickening the serum and preventing good distribution through your tissues. The few times I used ice, I got a hard lump that didn't dissipate. My onco nurse told me NO ICE, USE HEAT! Now I turn on the seat heater in my car, walk it out, massage it, sit on a heating pad, take a bath before bed-- anything to keep the Faslodex warm and thinned out. I still get sore but it's not nearly as pronounced.
Claritin helps.
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I think movement and warmth at first to circulate the drug. But later (evening?) ice for the inflammation and pain.
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Help I'm turning into Porky Pig! I know it's at least partially from the Faslodex. Covid restrictions are not helping. Seems like I'm hungry all the time. Grrrr💞
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I agree Grannax, with menopause and/or our favorite female hormone being tamped down, the tendency to gain weight is very real. Adding 'stress baking' to fitness centers being closed makes it even worse...
My theory involves the idea that, because estrogen is manufactured in fat cells by the action of the aromatase enzyme, our aging bodies stubbornly hang on to every shred of adipose tissue so we can continue to enjoy the benefits of bone and cardiac health, not to mention enhanced mood!
Until I can get back to water exercise class, I'm keeping more fresh fruit and veggies on hand for snacks and, now that the weather is finally improving, getting outdoors to move around in the fresh air. Of course, having those healthy foods available means more trips to the grocery store with potential for coronavirus exposure. Picking out my own produce is one thing I won't delegate to on line ordering systems. 🍓🍐🥕🥒
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The experts say that extra weight is not good for cancer, yet all these drugs help put the extra weight on us not to mention as said above, menopause. I don't feel like I really overeat (although since the virus a little more so I guess), however it's also hard for me to do any substantial exercise because of pain now. I'll get in the pool when we open it and do some exercises (although that hasn't seemed to help much either), but that's only a couple months out of the year and only on nice days. Plus we must remember that too much sun isn't good for us either. Vicious cycle.
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Hi,
Im also getting faslodex and also on the thin side. The first few injections were brutal and left me in alot of pain and unable to get out of bed for about a week. Im very proactive now and I use both hot and cold packs before and after the injections. Its also really importnat that the nurse goes very slowly, maybe even more slowly than they normally would. Are they injecting in the correct area, away from the sciatic nerve?
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I am also fairly slender but have found the injections quite manageable. I have 2 rules to ensure they are manageable. 1. I insist on warming the vials in my hands of under my arms for 10 minutes or until i am satisfied they are warm. 2. The injection is given slowly i.e. at least over a minute. If I develop a deep ache during the injection I ask the nurse to slow down.
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Okay, folks, I am on Ibrance/Faslodex. I've been getting the Faslodex shots for about 11 months. Previously, I read about folks who got bumps where they got the shots. That has never happened to me. I had my most recent shot last Tuesday. While getting it, the nurse injecting it was distracted by a bunch of things (too complicated to explain) and for the first time ever, the shot was pretty uncomfortable on my R side. I had to ask her to slow down the shot, and the next day I had a lot of pain.
I did all of the precautions -- weight on my other leg, took an antihistamine, walked afterwards. Looking for any other solutions to get rid of the bump. It's still uncomfortable.
Thanks for any advice.
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BevJen,
As a multi-year member of the Faslodex Fanny Pack, my veteran's advice to you is this: when you're about to get your next Faslodex injection, ask the nurse if the syringe has been warmed to room temperature and to please administer it slowly. Tell her that you had a lot of pain the previous time. Do this with each new "injector" RN until the message sinks in. Seriously.
It's only right for us to be a a vocal "pain in the ass" to those who are causing one for us, however unintentional it may be.
Tina
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I noticed when I got last months injections it did not hurt at all! I think the extra 10-15 lbs I’ve put on since DX and Covid-19 has given me some padding in that area.
Got to get back to clean eating! What do you guys use for thinning hair? I had a thick head of hair when I started Ibrance/Falsodex but have noticed considerable thinning and texture change. It also doesn’t grow as fast..
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Tina,
Thanks for that reminders. My regular nurse is going out on maternity leave, and she was very rushed this last time -- another nurse in the room observing, a patient just outside of the room with all sorts of issues. I did see her put the vials into a warming pak, but I think she usually does that earlier before I even get in the room because that's the first time I saw her do that in front of me. So perhaps it wasn't warmed enough. And yes -- I can be a pain in the ass rather than leaving there with one -- and I will!
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BevJen - I just got my monthly Faslodex and XGEVA shots today. I have been having pain since early April in my lower back that runs down the backside of my right side and will be seeing a spine specialist in a couple of weeks for something they think is unrelated to cancer. That being said, I was dreading the Faslodex going into my right hip due to the pain I am dealing with from the back issue. I mentioned this to the nurse and she had me lay on my left side and administered the Faslodex on the right side of the hip. The left side she administered as normal. So if for some reason you continue to have any problems on one side, they can administer in a different spot.
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Cowgal,
Thanks for the tip. I already had them targeting a slighter higher spot on my right hip due to occasional sciatica there. But this was like no other shot I've had, and I actually had the lump two days after. I usually stand. Maybe I should lay down. Worth trying.
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The lumps in my butt from the injections seem like they never go away.
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Jackie, over the many years I've been on Faslodex, sometimes even my lumps had lumps! After a while, one just forgets about it unless they're sore, then it's annoying at most.
Tina
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After almost 2 1/2 years, my lumps seem to be permanent. But I’ll take them as long as Faslodex keeps holding things steady.
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Tina..."even my lumps have lumps" gave me a chuckle! 😂
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Hi,
I just started Faslodex + Herceptin yesterday.
I’ve been on Xeloda + Herceptin since September 19 and all 4 pet/ct scans since starting Xeloda have concluded ‘stable sclerotic bone metts’ - yay. However, the fatigue of chemotherapy has been getting to me, so my MO proposed this switch to Faslodex + Herceptin and continuing Xgeva (of course).
Just curious, anyone here also Her2 + and on this combination and can share some personal insight ?
Thank you ladies and have a great day.
The sun is shining in Denmark today - I am so looking forward to a summer without chemotherapy !
Take care,
Meja
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Anyone on this thread have the FGFR1 amp gene AND their MO put them on Faslodex? Just gathering info before I meet with MO...
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SandiBeach...I have the FGFR1 amp gene and am currently on Ibrance/Faslodex. I was originally dx with widespread liver mets and was on Taxol/Gemzar for about 8 months and after I was stable continued on Taxol only for about 9 months when a small bone met appeared. My MO and second opinion MO at Stanford thought it might be a good time to try Ibrance/Faslodex. I've been on this combo for 4 months. I missed my PET in April due to Covid, but am scheduled for one 6/15.
From what I understand, my combo might work for me with my FGFR1 amp, it just might not be as effective for me for as long as for others without this mutation. Based on my mutation I’d like to consider an FGFR1 inhibitor trial/drug or maybe Afinitor in the future.
PB
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