Faslodex Girls Thread

Since last December (11 months into my treatment) I started having really bad pain in my feet. It was difficult to walk or stand for long. Then by mere coincidence, I was in Thailand for work, I ate tofu and drank soy milk and the pain disappeared! It was magical really. I knew then that it was the lack of estrogen in my body, and knowing that soy is a good harmless estrogen source, I came back home and started eating tofu and drinking soy milk…I'm sure it's not the same kind of soy though because pain started to come back, so I stopped it. Now I'm back to my homemade almond milk and the feet pain. I told the doctor as I was scared that it's a progression in my feet bones but nothing seem to show on the scan…Where I am, they only give the shot in a third of the butt, so that whole place is numb now. I take antihistamine before my shots, otherwise it's more painful and itchy.

I know that Guillain-Barre Syndrome is possible after a flue shot. I know several people it has happened to. It was not mentioned as a cause. I am not sure I told the care team I had the flu shot because I dont think I associated my reaction to the flu shot at first. I started feeling better the day before and felt fine the day I got my fulvestrant shot. I didn't think about it until they told me nothing had changed with the fulvestrant drugs. The left side nof my butt were the shot was give is still mildly tender the other side is back to normal. . I honestly am not sure what to think. I still am stiff in the morning the ache is confined to the lower back and upper thing which is consistent with SI joint. I am supposed to touch base this week with an update.

@brutersmom - Thanks very much for the info. Now that I'm reading more, it's looking like essentially everyone who gets Guillain-Barre Syndrome has to go to the hospital, and I don't think I'm in that kind of situation, plus it's been a good two weeks, so going back to thinking it's probably the drugs, ergonomics, the weather, or unfortunately a possible cancer progression. I'll see what the onc says on Wednesday. I had a time too when I thought the drug might have changed or they switched brands or something, but I found out they hadn't - only that the routine manufacturer changed the packaging. Sometimes symptoms do make you wonder. I'm glad your symptoms seem to be improving, but also doesn't seem like you should be aching this long after. I hope you continue to improve and get better soon. I'm supposed to get my next set of shots on Wednesday, but I'm going to tell them I'm a bit wary given what has happened.

Three-tree. Guillain-Barre Syndrome is pretty serious. The people I know that had it lost mobility and strength. Not much was said about pain in the back. One person was bed bound for at least a month and then with rehab he did eventually recover. As for the ache for me I don't think is cancer spreading. I had scans 2 weeks before. The nurse did say that inflamation from the medication would take about 2 weeks or longer and continue to improve. Lack of improvement would be a concern.

Well, I'm off thinking now that this is Guillian-Barre, largely because of the severity that people have with it, and mine doesn't fit in that regard. I'm starting to think it's "plain old" sciatica and it's been aggravated/compounded by posture/ergonomic changes at my computer area, the last fulvestrant shot/low estrogen, possibly the weather, but also a digestive factor that I had initially considered but then dismissed. About the time I got those last fulvestrant shots, and then the flu shot, I also started eating all sorts of raw fruits and veggies that would have really increased my fiber intake. I get a lot of fiber as it is, but I started eating an apple and some blackberries with lunch almost every day, because I love them in the fall. I also added a daily serving of chanterelle mushroom, because my local co-op gets them in in the fall and they are supposed to be real good for the immune system. I usually have something cruciferous too. Additionally, I went back to eating a slice of whole grain rye bread with breakfast. I used to do that and then just dropped off, but I was also reading about all the benefits of beta glucans that are in barley and rye (found some barley soup too!). In other words I went crazy on a new dietary thing and greatly increased all my whole grains, and raw fruits and veggies. Over time I think it just overwhelmed me with way too much fiber and I wound up with all sorts of digestive problems. I think the pressure from all that stomach business affected some nerves in my lower body and along with the effect of the shots. low estrogen, etc., it was all just too much. I was also doing all sorts of posture shifts and changes trying out a new foot rest I got. It caused me to sit much differently in my chair and I almost immediately felt some soreness in my rear end area; hips and rear end. It seemed to all just explode one day and everything reached critical mass. I've cut way back on the food and am trying to take more breaks from the computer, and only use one position for the foot rest. Very slowly things seem to be improving, so I will wait this all out and see if the onc has any comments this Wednesday when I am supposed to get my next set of shots. I'm a bit afraid to bring it up with him though, because I think he might order a scan of some kind and I just don't want to do it. My scans in September showed relative stability and my next ones are due in late December. I want to keep it that way, so maybe I'll stay hush, hush. Who knows, Wednesday morning is another day.

Brutersmom - Really good to hear that you're so much better. I can understand being wary of the shot, after what you went through. The glute stretches sound good.

I had a real bad spell yesterday and broke down and called my onc's office. Right up front though, I told them I didn't want to go to the ER, and was hoping to make it to my Wednesday appointment with them to deal with this. I have a long scheduled appointment later this morning with a liver tumor surgeon for a general consultation and didn't want to miss it. After some back and forth, the onc's office and I agreed to wait until this morning, at least. I'm not great at all so far, but still hoping to make the appointment. A friend will drive me. I got worse yesterday and it's much more of a digestive thing now than it was. I can't eat solid food and even liquids cause pain, rumbling, and the "D". I've also gotten pretty weak. It comes in major waves, then seems to get better, then worse again. I'm starting to wonder if all that high fiber I was eating didn't cause something like a partial obstruction. I think it might be the digestive pressure that's causing the pins and needles. Just hoping I make it through and to this liver met consultation this morning.

I sure don't know about getting those fulvestrant shots tomorrow , though. I couldn't do it today if I had to.

Thanks, Brutersmom.😊

eleanora I did both together the fall before my cancer returned. I will never do that again. IIt was not as bad as this years reaction. This is the first time I have had this type of reaction to the flu shot. Definitely, glad I didn't do the 2 together.

Had the best shot giver since I've started. Here's a few tips that worked this time. I put the shots under my underarms to warm them. That way I know they weren't just set out to reach room temp. She was a new RN and had a trainee, so she sure showed her the right way to give the shots. Stayed away from the sore spots that have thickened and did it very slow. No lumps this time. Plus we sang "Bermuda, Bahamas, come on pretty Mama", at my insistence. lol

Fulvestrant shot yesterday. No reaction this month. No pain no adhesive reaction etc. Had to have been the result of the flu shot.

Discontinuing only in markets like Australia where the patents have expired and there are generic versions available.

Hi all , I also get the generic here in the US so haven't heard of any discontinuations. I just completed my 6th year on faslodex / fulvestrant ! 72 injections (including the 2 injections first month , Nov 2019.
I have had little to no side effects and hope to stay on this drug ! Hard to believe I'm starting my 7th year mbc .

Has anybody else experienced or connected a sharp stomach pain with Faslodex shots? The pain is between the navel and below the breast bone, pretty much center between the bottom of the ribs. It's sharp and crampy and often comes with a migraine type headache too - behind the eyes. I just got my last shots on Tuesday, so am feeling real "side-effecty" these last couple of days, and expect to continue for a few days as usual. I first noticed this pain and wondered about it's association with the shots after my flu shot mid October. I had wondered if the Faslodex shots earlier that month and/or the flu shot had contributed to this, but found nothing definitive. I experienced it again around early November right before I got my shots last month I've spent the last couple of months talking to the oncologist, the PCP, at urgent care, and in the ER trying to sort this out, among some other things, and no one has pinpointed anything about that stomach pain. My oncologist thinks this might be a "multi-factorial" thing. I thought it was dissipating over the last week or two, but now after getting the Faslodex shots, it's showing up again. I woke up with it around midnight last night, but it calmed down after awhile and went away. When I woke up this morning everything seemed fine, but now that I've been up for awhile the pain is coming back as is the headache. I still wonder if it's one of the migraine type symptoms I can get with these shots, as they can occur at night and in the morning. Any similar experiences, ideas, or suggestions? (Also, I use a "happy light" that has triggered some sort of migraine type symptoms in the past. It could explain this morning, but not last night around midnight.)

@brutersmom - Thanks so much for responding. I wrote that last post in a bit of a panic and after calming down a bit and thinking some more, I'm more and more convinced that it's costochondral pain from my ribs that is radiating to my stomach. (Dr. Google AI says that can definitely happen😉.) I think it is sore muscle pain. I remembered that in my recent visit to the oncologist where he said it was likely "multifactorial" he did suggest a possible costochondral connection. I've had a lot of costochondritis type pain over the years, especially since the breast surgery; different medical people have suggested it, and it can act up real badly from time to time, but this particular pain seems to have only appeared over the last couple of months, and has now gone beyond just my chest/rib area, down to my stomach.

Re breast surgery, you asked if I had had radiation to the breast. Well, I had a left sided mastectomy (no breast left to radiate) and then proton radiation to that whole left side. That has left me with some chronic pain for sure. You said some of the cramps you get can knock the wind right out of you, and I think I can relate. They took part of my pectoral muscle, along with the breast, and I am left with a "partial muscle" on the bottom of that left side, and it was radiated. At times, that bit of muscle can spasm/cramp terribly and literally send me through the roof. I have to move around a lot and massage it to get things to improve. That adds to the costochondral muscle and joint problem too, but most of that pain comes from the way I sit and use the computer and/or my phone, and it's been ongoing for years now. It comes and goes, but can get a lot worse if we get a lot of rain and damp. I seem to be one of those people who really reacts to the weather changes, and we've been having a real notable rainy spell here for a couple of days. Combined with just getting the shots, I've got innumerable muscle and joint aches going on big time right now, and I'm starting to think that this new sharp stomach pain is just part of that. It's starting to rival that spasming muscle I get in terms of sharp "knock the wind right out of you" pain. It does go away and that's a good sign in my book. One of the other "multifactorial" things is the low electrolytes that I've had over the last couple of months. Low electrolytes can cause muscle and nerve connections to go haywire and nothing works like it should. It can take awhile after getting the electrolytes back in balance, before everything gets back to working properly again. I'm better than I was in that department, but I don't think all is totally fine yet.

Some of the medical people I've talked to over the last couple of months have thought this was an acid reflux issue and wanted me to start taking Pepcid and Omeprazole, etc. That has never jived with me and to satisfy them I did try some Tums and Pepcid for a few days here and there and none of it helps the particular pain I've been referring too. One urgent care doctor didn't even want to talk to me about what was going on, but made an immediate referral for an upper GI scope! I cancelled that, as it just didn't fit with what I experience. I'm glad you mentioned the radiation too. With that, the joint and muscle pain caused by the fulvestrant, posture/positional issues, low electrolytes, and the bad rainy, damp, and cold weather, I'm just more and more convinced that this is a muscle problem.

I sure appreciate you weighing in and you've really helped by giving me some increased perspective and more food for thought. Thanks so much!