Faslodex Girls Thread
Comments
-
I agree. It all comes down to the skill of the nurse, and probably a little luck too. I've had several that went in with no lump and no soreness and others where they must have hit a blood vessel or something and I bled through the bandage to my jeans and got left with a large, sore lump and a bruise. I never had bruising effect blood counts or anything though. It's just painful for a few days.
0 -
I started Fulvestrant (Faslodex) about 2 months ago (with Everolimus) and have very recently noticed a slight loss of urethral sphincter tone and thus control. Since menopause I have needed to get to the bathroom quickly when my bladder is full, but without dribbling. Now I sometimes dribble before I make it to the bathroom. I wonder if this could be d/t Fulvestrant's effects on estrogen? Has anyone experienced a similar symptom? More concerning....I have read that spinal mets can cause loss of bowel and bladder control.
My experience with the injection: At my oncology center, Fulvestrant is only given into the ventral gluteal muscle, which is in front of the buttocks and above the hip bone. They do not give it into the upper outer quadrant of the buttocks because of the location of the sciatic nerve. I've had the best outcomes with it being given "warmed up" and over 2 minutes each injection. Even then I still may be sore for a day or two; sleeping with a heating pad seems to help. The one time, so far, that I ended up with a lump the nurse gave it over only one minute.
I too am watching with interest when oral SERDS or SERMS, that are effective against the ESR1 mutation, get approval. What I read is that Elacestrant has median PFS of 3.8 months. If you've run out of treatment options and need it now, the Menarini Pharmaceutical company is offering an Expanded Access Program for this drug. And Lasofoxifene is a SERM that really interests me. The phase 2 trial (Elaine II) showed a median PFS of 13 months. A phase 3 clinical trial will be starting with Lasofoxifene and Verzenio. I hope to find a trial nearby and hope to be eligible.
Wendy
0 -
weninwe, I have diffuse spine mets from skull to femurs and in my bone marrow, and as of right now, I still have control. I’ve been on Faslodex for 13 months. I’ve had mets since 2013.
0 -
kbl,
Thanks for your response. I notice you have lobular, like me. Are you on Faslodex plus Xeloda?
Wendy
0 -
Hi, Wendy! Yes, I’m on both. It’s been almost 14 full months. When I started, my CA27-29 was 374, down from a high of 490 when I started Ibrance and Letrozole. I was having issues with losing weight and the same symptoms from when I found out about the cancer, so I asked to go on Xeloda. They put me on Faslodex with it. Tumor marker is at 94 right now. My tumor markers work for me.
0 -
Weninwi - I do sometimes seem to have a little less bladder strength than I did. I used to be able to "hold it" really well and now if I have to go I have to go. I've been on Faslodex for almost 3 years but I m not sure if I can pin it to that specifically or if it's just a process of aging. It does make sense, depending on where the mets are at in your spine, that those could contribute also. If they erode enough of the vertebrae to cause compression or damage to the spinal cord or nerve endings. Mets to the lower lumbar and sacral vertebrae I would think might exacerbate that issue.
0 -
I don't think I have a problem with bladder control but I do feel like I have had more problems with my sphincter muscle not being as strong as it was before all these stage 4 treatments.
emac - Did you find any solution to your pain problems besides the steroids? Several months back, a few people on here told me about LDN (low dose naltrexone). My MO and my PCP aren't familiar with using it and if I remember right from my research, I would need to find probably a pain specialist or naturopath and that would require probably a 2.5 to 4.5 hour drive to go to any of those kind of places. I may end of doing that as if the prescribed LDN or had another answer that could help the pain, it would be worth it.
0 -
Has anyone experienced hip pain after starting fulvestrant injections? It’s become enough to interfere with my mobility. It’s just on one side. I was given the shots in the upper outer quadrant of my backside (like between 12 and 3 on a clock) which seemed kind of high. But I have only had the two sets of injections, 2 weeks apart,since I just started. I did not have any Mets show up there on my September scans. Maybe it’s just the aches the meds can cause? I get my next injections tomorrow and maybe I should mention this? Thanks for any info.
0 -
believe60,
I have occasional mild hip pain which I assume is d/t my cancer mets, but I have not experienced increased hip pain after starting my fulvestrant injections. I'm not sure if fulvestrant is associated with joint pain.
Regarding location of the injections....if the shot is given into the buttocks, then it should be given right where you describe in the upper outer quadrant between 12 and 3 o'clock to avoid the sciatic nerve. At the cancer center where I go, they only give it in the ventral gluteal space, which is more anterior to buttocks and above the hip joint. It may not seem like there is much muscle there, but there is, and the location is far from the sciatic nerve.
0 -
I have had constant hip pain for a really long time, but two months ago when they injected the Faslodex, I had a burning pain that went right to my hip. Scared me, but, thankfully, it didn’t last long. I would definitely mention it to your doc.
0 -
Cowgal - I hadn't heard of that. I see my MO next month and will ask about it. He has agreed to let me stay on the low dose Dexamethasone until I see the endocrinologist in January. It has taken 90% of my pain completely away. I'm as close to my pre-cancer baseline that I have been in a long time. I still have some pain in my hip and back but overall I went from thinking I couldn't continue on Faslodex to thinking I could live pretty normally like this. I've been trying to get the most out of it while I can.
0 -
I promised on last night's weekly Zoom meeting that I would try to post where I have been injected with Faslodex. Below are the pictures of two different locations that they can give the shots in. I originally was given the shots in the dorsoglueal area but started having problems not long after starting the shots. I was switched over to the ventrogluteal area and that is where I will only receive these shots from now on! My oncology nurses that give me the shots said that they no longer give these shots in the dorsogluteal site unless someone was already receiving shots in this area and doesn't want to change but they now only do the ventrogluteal site otherwise. I think that it is because my MO has seen the problems that I have experienced and continue to experience. I know that there are others on this forum that have dealt with some similar side effects. I should add that I am also on XGEVA and Ibrance and these both have lower back pain as a possible side effect and I think it is XGEVA that lists sciatica as a potential side effect.
Below is a post I made to Rose on January 6, 2021 that addresses some of the issues. Also, I have included diagrams to show the difference between the two injection types.
Rosie - I have not had a drop of alcohol since going on Ibrance/Faslodex/XGEVA so I can't help with the liver enzymes question. As far as the second part of your question, I am learning the hard way about side effects from the Faslodex shot. First off, I have been on Faslodex for about two years now. I am almost 58 years old and never had back pain that I can remember or any sciatic nerve pain issues. After being on Faslodex for a couple of months, it became harder and harder for me to do my walking and I was getting pain in my sciatic nerve and back pain all on my right side. I tried doing more stretches, etc. and it just kept getting worse. It eventually became debilitating and we did not know what was causing all of this but I was eventually suspecting that it could be the Faslodex. At that time, I was getting the Faslodex injections in the dorsogluteal site (right above your butt) and now I get them in the ventrolgluteal site (kind of on the side of your hip). I think that the original injection site caused my sciatic nerve problems and maybe some of the back issues. If you look at my MRI or scans, you can see that I have some degenerative issues in my back but they never bothered me before. I think that the Faslodex by blocking the estrogen in the body makes our joints stiff or hurt. My theory is that there may be areas of our body that did not bother us before but now that the lubricant in the joints is diminished now bother us so we are noticing new areas that hurt or other areas that hurt more than they did. I thought about asking my MO if I could go to a half dose but research I did shows that it is not as effective at a lower dose. I have made some accommodations to try to manage the pain and am happy to share with anyone else that is having issues.
0 -
For some reason the injection site diagrams did not attach. Here they are:
0 -
Cowgal, thanks for posting those diagrams. The nurse I usually get for the injections is so kind, and I know she won’t mind me asking about doing things differently. For me the pain is more like in the groin area and around the side of the top of my leg, with a stiff lower back feeling. This all started after I started fulvestrant injections, but I also started ibrance that same day. I’m just into my second month of treatment. I have a hip/pelvic MRI coming up, but September scans (that diagnosed MBC) did not show any Mets on that hip side. I saw a pain doc yesterday who recommended oxycodone, but I need to be able to drive! And not feel loopy! For those of you who have been on this combo longer, does your body get used to it, or do joint problems stick around? Thank you. I so appreciate this forum.
0 -
Cowgal, thanks for posting those diagrams. The nurse I usually get for the injections is so kind, and I know she won’t mind me asking about doing things differently. For me the pain is more like in the groin area and around the side of the top of my leg, with a stiff lower back feeling. This all started after I started fulvestrant injections, but I also started ibrance that same day. I’m just into my second month of treatment. I have a hip/pelvic MRI coming up, but September scans (that diagnosed MBC) did not show any Mets on that hip side. I saw a pain doc yesterday who recommended oxycodone, but I need to be able to drive! And not feel loopy! For those of you who have been on this combo longer, does your body get used to it, or do joint problems stick around? Thank you. I so appreciate this forum.
0 -
I have asked several times over the 12 years I've been on Faslodex, but the nurses in my oncologist's practice will not give me the injections in the ventrogluteal site. They cite all kinds of anatomical reasons, including that there isn't enough fat, which is ridiculous in that I have cushioning to spare. Now that I've done ten minutes of online research, I'm tempted to conclude the real reason is their discomfort with an unfamiliar process.
In recent years I have suspected the monthly injury of the injections contributes to my increasing mobility problems, leading my doctor and I to seriously discuss my going on hiatus from Faslodex. The last time I did that the cancer in my lungs progressed.
What do I do?
Tina
0 -
I have asked several times over the 12 years I've been on Faslodex, but the nurses in my oncologist's practice will not give me the injections in the ventrogluteal site. They cite all kinds of anatomical reasons, including that there isn't enough fat, which is ridiculous in that I have cushioning to spare. Now that I've done ten minutes of online research, I'm tempted to conclude the real reason is their discomfort with an unfamiliar process.
In recent years I have suspected the monthly injury of the injections contributes to my increasing mobility problems, leading my doctor and I to seriously discuss my going on hiatus from Faslodex. The last time I did that the cancer in my lungs progressed.
What do I do?
Tina
0 -
tina2,
As a retired nurse, I'd concur with your conclusion that unfamiliarity is probably the reason the nurses are reluctant to use the ventro-gluteal space. But it's not the lack of fat that matters. Fulvestrant requires an IM injection which refers to "Intra-muscular", so it's muscle that matters, and there's plenty of muscle in the ventro-gluteal space. It's just a smaller target area, than the upper-outer quadrant of the buttocks. But most importantly it's safer because there is no major nerve to avoid. Are the nurses who give the Fulvestrant shots RNs or ADNs (associate degree nurses)? I'd suggest you keep pushing the issue and ask to talk with the nursing supervisor of the department.
0 -
tina2,
As a retired nurse, I'd concur with your conclusion that unfamiliarity is probably the reason the nurses are reluctant to use the ventro-gluteal space. But it's not the lack of fat that matters. Fulvestrant requires an IM injection which refers to "Intra-muscular", so it's muscle that matters, and there's plenty of muscle in the ventro-gluteal space. It's just a smaller target area, than the upper-outer quadrant of the buttocks. But most importantly it's safer because there is no major nerve to avoid. Are the nurses who give the Fulvestrant shots RNs or ADNs (associate degree nurses)? I'd suggest you keep pushing the issue and ask to talk with the nursing supervisor of the department.
0 -
Good evening ladies. I am just starting Faslodex tomorrow morning, I have to admit I am quite nervous.Is there anything you can tell me thst will reassure me that it won’t be unbearable and life can be normal afterward. I am to start Ibrance as well in the very near future. That scares me more. I have been reading above. I have not had a lot of pain so far, but today of all days I am having low back pain and right hip pain. Here’s hoping! Thanks, GiG
0 -
Good evening ladies. I am just starting Faslodex tomorrow morning, I have to admit I am quite nervous.Is there anything you can tell me thst will reassure me that it won’t be unbearable and life can be normal afterward. I am to start Ibrance as well in the very near future. That scares me more. I have been reading above. I have not had a lot of pain so far, but today of all days I am having low back pain and right hip pain. Here’s hoping! Thanks, GiG
0 -
Thank you, weniwi! I will persist, but I don't hold out a lot of hope, My oncologist is in a very small practice with just one other oncologist, several friendly and professional RNs, a pharmacist and two receptionists. One of the RNs who gave me an unequivocal "no" to my question about the ventro site is the office's senior nurse/supervisor.Maybe it's time for me to move on. I've been thinking about it for a while, but it's difficult to contemplate, since I've been with this doctor on and off since 1985. (Yes, you read that correctly.)
I greatly appreciate your response.
Tina
0 -
Thank you, weniwi! I will persist, but I don't hold out a lot of hope, My oncologist is in a very small practice with just one other oncologist, several friendly and professional RNs, a pharmacist and two receptionists. One of the RNs who gave me an unequivocal "no" to my question about the ventro site is the office's senior nurse/supervisor.Maybe it's time for me to move on. I've been thinking about it for a while, but it's difficult to contemplate, since I've been with this doctor on and off since 1985. (Yes, you read that correctly.)
I greatly appreciate your response.
Tina
0 -
gigil,
I started Faslodex (Fulvestrant) in Sept so it was a new treatment for me and I was nervous. But it turned out to be easier than I had anticipated, and each repeat time my anxiety was less.
I received several good tips from this thread. The product is thick and the amount is significant, therefore: 1. Vial should be warmed before the injection (i.e. taken out the refrig in advance or held in a closed hand or rolled back and forth between hands for a few minutes is probably enough to warm it up). 2. Injection should be given slowly....that means over 5 minutes each injection. 3. Keep your weight mostly off the leg on the side getting the injection. 4. Talk while you're getting the injection to keep yourself distracted. 5. Walk around afterwards to help the medication absorb.
Don't be reluctant to communicate with the nurses. Each time I always asked the nurse if she was experienced giving this medication and I explained that I wanted the injection given over 5 minutes each side. At my cancer facility Faslodex is only given into the ventro-gluteal space - never the upper-outer buttocks. I stood leaning over a counter, with my weight mostly off the side getting the injection and my foot turned slightly inward. I said a rosary to keep myself talking, which was fine with the nurses. Afterwards I made a point to walk out at a good pace, use the stairs, and once home take another walk. The only time I ended up with a lump is when the nurse gave the injection too quickly, but the lump eventually resolved after using a heating pad for a couple of nights.
Hope it goes well for you.
0 -
gigil,
I started Faslodex (Fulvestrant) in Sept so it was a new treatment for me and I was nervous. But it turned out to be easier than I had anticipated, and each repeat time my anxiety was less.
I received several good tips from this thread. The product is thick and the amount is significant, therefore: 1. Vial should be warmed before the injection (i.e. taken out the refrig in advance or held in a closed hand or rolled back and forth between hands for a few minutes is probably enough to warm it up). 2. Injection should be given slowly....that means over 5 minutes each injection. 3. Keep your weight mostly off the leg on the side getting the injection. 4. Talk while you're getting the injection to keep yourself distracted. 5. Walk around afterwards to help the medication absorb.
Don't be reluctant to communicate with the nurses. Each time I always asked the nurse if she was experienced giving this medication and I explained that I wanted the injection given over 5 minutes each side. At my cancer facility Faslodex is only given into the ventro-gluteal space - never the upper-outer buttocks. I stood leaning over a counter, with my weight mostly off the side getting the injection and my foot turned slightly inward. I said a rosary to keep myself talking, which was fine with the nurses. Afterwards I made a point to walk out at a good pace, use the stairs, and once home take another walk. The only time I ended up with a lump is when the nurse gave the injection too quickly, but the lump eventually resolved after using a heating pad for a couple of nights.
Hope it goes well for you.
0 -
Weninwi, thanks for the info. I made sure to walk right away after my injections. It wasn’t nearly as painful as I thought it would be, Tomorrow I start Ibrance. Now I am worried about that. Getting used to new meds is the hardest part for me. I have to get x-rays on my right femur to see if I need a rod there. My radiation oncologist was hesitant to treat it and weaken the bone. Darn
0 -
Weninwi, thanks for the info. I made sure to walk right away after my injections. It wasn’t nearly as painful as I thought it would be, Tomorrow I start Ibrance. Now I am worried about that. Getting used to new meds is the hardest part for me. I have to get x-rays on my right femur to see if I need a rod there. My radiation oncologist was hesitant to treat it and weaken the bone. Darn
0 -
gigil,
Glad the Fulvestrant injection went well for you today. I also have a lot of anxiety when I start a new medication.
Ibrance was easier for me than Verzenio. I started out at 125mg but d/t low neutrophils (ANC) the dose was lowered to 100mg. At that dose my ANCs stayed above 1000 and I really didn't have any other noticeable side effects. If I had developed more side effects, I might have asked for the next lower dose. But I was on it for less than a year because I progressed.
I developed nutrient deficiencies (Vit B12 and Vit D) while on Verzenio. And you'll read on the Ibrance Palbociclib thread that others have developed these same nutrient deficiencies while on Ibrance. I'd recommend finding out your baseline levels and repeat at some future time. I had to ask my primary care provider for these tests. I was able to remedy my low levels with sublingual Vit B12 and sublingual Vit D3 supplements. There's good absorption via the sublingual route, maybe even better than the gastric route.
Hope you get a good long run with Ibrance.
0 -
gigil,
Glad the Fulvestrant injection went well for you today. I also have a lot of anxiety when I start a new medication.
Ibrance was easier for me than Verzenio. I started out at 125mg but d/t low neutrophils (ANC) the dose was lowered to 100mg. At that dose my ANCs stayed above 1000 and I really didn't have any other noticeable side effects. If I had developed more side effects, I might have asked for the next lower dose. But I was on it for less than a year because I progressed.
I developed nutrient deficiencies (Vit B12 and Vit D) while on Verzenio. And you'll read on the Ibrance Palbociclib thread that others have developed these same nutrient deficiencies while on Ibrance. I'd recommend finding out your baseline levels and repeat at some future time. I had to ask my primary care provider for these tests. I was able to remedy my low levels with sublingual Vit B12 and sublingual Vit D3 supplements. There's good absorption via the sublingual route, maybe even better than the gastric route.
Hope you get a good long run with Ibrance.
0 -
just here to give hope to those just starting faslodex. I started in 2017 and it's still working for me. I can't say I have no side effects. No pain but my body sure could use some estrogen. In a big big way. There is ways to deal with it but it involves more meds. But I'm here. Yay.
Hope everyone gets good results.
0
