Faslodex Girls Thread
Comments
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Meja - I live in the Oklahoma Panhandle in the United States. We get some big temperature fluctuations here and can get cold in winter but not this cold for this long. Right now we hare having to do rolling power outages in Oklahoma and Texas because there is obviously a lot of demand on our energy system since this extreme cold is all the way down to south Texas. A good amount of the energy we use in Oklahoma and Texas is from wind energy and the windmills are all froze up and are not working at all. My cattle were not looking so good yesterday morning but looked a little better later on. How cold is it in Denmark usually in the winter? I have contacted AstraZeneca about Faslodex and will report back what I find out. I have also tried some different medicines but was getting worried about my last blood test that showed my BUN level was up so have stopped all NSAIDS and Acetamenophen cold turkey until I talk to my MO on Thursday. I am taking gabapentin and think it helps some after it is in your system for a while. I am going to ask my MO if it is safe to take CBD oil and see is it gets me healed up and get some acupuncture (I found out that my insurance will pay for acupuncture but not dry needling and I think they are essentially the same thing).
BevJen - What do you do for your arthritis? My MRI on my back showed degenerative issues and a bulging disk. I have wondered if the Faslodex makes areas that are already not in the best condition hurt more and that it just has made my back to where I need something to manage the arthritis. I had been doing better but this really cold weather has aggravated it to being worse along with some other areas of my body that I suspect have some damage.
RosieRed - I agree with BevJen. Definitely talk it over with your doctor. Hopefully, you will not have this side effect and hopefully, we can find some answers and better manage the side effects like we do on so many of the other side effects from the drugs we have to take. Wouldn't it be great to have a drug that cured our cancer or kept it in remission and the side effects were: helps you achieve and maintain a healthy weight, great hair and skin, feel great, increase cognitive function and keep you in an optimistic mood?
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RosieRed, I don't have back issues per se, but do have degenerative disease all through my body and mets to T11. I used to take Letrozole and it always affected my joints making the pain worse, but since being on Faslodex, I've found it to be much easier without any big issues. I agree, you'll definitely want to express your concerns with your MO.
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Cowgal,
Well, for my arthritis and other wonderful degenerative disease issues, I take OTC stuff when I can't handle it. (I have a very high pain threshold.) I sometimes also use an infrared heating pad which seems to help a lot. And I keep one of those icy hot rollers (looks like a container of roll on deodorant) and use it when I'm bad. That's it. So even though I have a ton of degenerative disease in my back/spine and even in my feet (!) I can sort of "manage" it. I should look into acupuncture or massage, I think. But too busy managing other aspects of my disease right now. I also don't go out into the cold very often bc I hate winter. For me, Covid has been a blessing in that regard -- I've decided to stay in.
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Hi Cowgal,
The tough weather you are experiencing in Oklahoma and Texas also reached the Danish news broadcasts, with pictures of frozen windmills. I hope you are doing okay, and that the cattle are managing the cold temperatures. The winter varies in Denmark, usually long and cold, last week we had - minus 19 degrees celsius, then around 0 and a lot of snow, but when we reach the weekend it should warm up a bit again, and the snow will melt.
I will be interested to learn what AstraZeneca reports back.
I also have problems taking NSAIDs, after a day or so I get GI side effects, so what to choose (pain relief or upset stomach ?).
I saw the PT again today and he worked on my buttock/trigger points again, stretched me and gave me knew exercises, - we'll see... He noted that my muscles are extremely tight and seem strained. I am just hoping it gets better.
Hi RosieRed, I agree with the others, you may not have any back problems from Faslodex, for most it is a fairly easy treatment with manageable side effects.
Take care,Meja
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Meja - We are doing fine. The weather is starting to warm back up so the worst is behind us. I think we will be around 23 F. today. We have a generator so we are able to power our house if we lose electricity. I live in a rural area and a part of the country where we can get extreme weather at times so the generator does not get used a lot but at times it has proven it's value. Our 432 head of cattle all seem to be okay so far and my 3 old horses are doing very well. I am thankful. Denmark looks like a beautiful place from what I have seen.
I have not heard back from AstraZeneca but I had a phone call appointment with my MO today so I asked him some questions. He said that back pain and sciatica are possible side effects but that they don't know why Faslodex causes this for some of us. I asked him if I could try CBD oil to help with my back and he okayed trying it, although he said they really don't have enough studies on it. He also said I could try acupuncture (I told him that I had done 3 sessions of dry needling and thought it might have helped but forgot to check with him before doing it but he said there was not problem). My insurance will cover the acupuncture so I am switching to that instead of dry needling, which are kind of sort of the same thing. Now, I need to figure out dosage and type of CBD oil to try. He told me to continue with my gabapentin.
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Cowgal, good luck with the accupuncture. It helped the neuropathy in my feet after initial chemo.
Ok, I'm a believer in a particular nurse at my center. Had my third set of jabs from her yesterday and no problems; never lumps or pain. The time before, I had a different nurse jab me, and I had knots plus hurt for several days!
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Bliss rock on the nurses who can do the jabs....and everything else they do!
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Karen, yes, so true!
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Got poked today. Just wondering how faslodex is working for you. Keeping you stable or shrinking your mets gone?
Now I hear I have tiny stable lung nodules over a year that are probably cancer. Too tiny to know for sure. Before he wasn't worried about them and said 1 yr before scans. I didn't even know about them. Now he says scans in 4 months. What changed? New software. Well I guess it makes sense to keep an eye on things. It was just so easy to pretend I didn't have cancer. Is your doctor using the new software to view scans.? He didn't agree with the radiologist. Fun, huh?
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After seeing the physical therapist today, I typed up some notes for my medical providers and for you guys here on the Faslodex thread. Since the recent pain episode has subsided, there was no hands-on today, but I got the PT's input. Here is my little essay. Let's keep crowd-sourcing solutions.
I have been trying to help myself and others to figure out exactly what causes our episodes of unusual pain related to Faslodex, so that we can avoid these problems or at least treat them in the most effective way.
I started Faslodex one year ago, in February 2020. During the first year I had three episodes of unusual pain in buttocks, leg, lower back, and/or tailbone area. These episodes followed Faslodex injections, and I never had these problems before. They were beyond the usual injection site pain. (In fact, how well the shots go does not necessarily predict how things will be in the days or weeks afterward.)
November 2020, low back and tailbone-area pain that lasted for at least a week. It hurt to rise from a seat, lean forward, bend over, or even to step the wrong way. April 2020, buttock pain that lasted about three weeks. It hurt to lift my foot/leg while sitting or standing, to cross my legs while seated on a mat or in a chair. January 2021, pain from buttock down back and outside of leg to knee that lasted five weeks. It hurt to bend my right leg while lying down, to lift my foot/leg, cross my legs, to twist around to look while backing up my vehicle. All these episodes interfered with sleep (finding a comfortable sleeping position), doing daily activities like dressing and chores, and minding my mental and physical health through yoga classes.
I have been talking with three other women I who have/had similar pain in buttocks, leg, lower back and/or tailbone (some more severe than mine). Like me, they did not have these problems before Faslodex. We wondered if body size could be a factor. Survey results, two of us are petite, one is "short but chunky", and one is tall and a bit overweight.
The product monograph from AstraZeneca June 18, 2020 lists adverse drug reactions in the FALCON trial that compared Faslodex 500 mg to anastrozole 1 mg, with 228 and 232 women: Myalgia (muscle pain) F 7% A 3.4%. Pain in extremity F 5.7%, A 4.3%. Back pain F 9.2%, A 6%. This monograph also lists adverse events from the CONFIRM trials which compared Faslodex 500 mg to Faslodex 250 mg, with 560 and 567 women: Injection site pain 13.9% and 10.2%. Back pain 7.1% and 9.5%. Pain in extremity 5.7% and 6.7% (a distinct and separate event from injection site pain).
Today I saw a physical therapist to get her thoughts. I showed her a picture of the dorsogluteal injection site and gave her some details about the procedure as well as my history. First, as to why these episodes happen, based on my description and the fact that the ibuprofen has helped to reduce the pain, she suspects inflammation of fascia or nerve, both of which can cause an aching pain. I was surprised to learn that nerve pain can be an ache, not just zings. I do often have aching down my leg during the injection. (When this happens I ask the nurse to pause until it subsides.) When asked why the pain after receiving the injections can vary so much in intensity and duration, and location to some extent, she said it seems likely to be related to position and placement of the needle. It does look like my bandaids are placed quite low compared to the picture of the dorsogluteal site in the nursing textbook, but it is hard to believe the really good nurses I see would not be trained well as to location and avoiding the sciatic nerve. I see no consistency between the severity of the post-injection events and which nurse does the injections. In other words, one time with a particular nurse I may have very little pain afterwards, and the next time significant and long-lasting pain. They all have lots of Faslodex experience, great bedside manner, and know to warm up the syringes and inject very slowly.
The PT and I also talked about what can be done beyond proper injection site and technique. I decided to try a prophylactic dose of ibuprofen when I get my injections, to try to minimize inflammation from the start. The PT also suggested I warm up before my shots as I would before a dance class, so I don't go into it with tight, tense muscles. She agreed with my yoga teacher than a pillow under my abdomen to flex the hips (I lie prone) could be helpful. She thought cold packs afterward might help, and explained that although cold at first restricts blood vessels, after a short time it opens them and allows more healing. So I will continue to use the warm packs briefly to keep the thick substance from pooling into a painful lump, but then I will try moving on to cold packs. She had no real opinion about acupuncture, but said massage could aggravate pain caused by inflammation. Stretching definitely hurts, and if it hurts, don't do it. They have some kind of machine in the PT department that can help with inflammation, so I will try to see her right away if another extreme episode occurs.
So I got a few ideas today. Next I would like to know how to officially report these adverse events to the pharmaceutical company, and I would like to talk to someone there who knows more than the lady I reached before. I would like to talk to any other medical professionals who could help me figure out causes and solutions. And I would like these adverse events to be recognized and researched the way other AEs have been (nausea, mouth sores, gastrointestinal problems, etc on various treatments) in order to understand them and to find solutions, or at the very least to validate the patients who experience them.
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Hi everyone - I've been on Ibrance, Xgeva and Faslodex for 13 months and never had any bad side effects to speak of....except this past Wednesday when I received my Faslodex injections, I have had such pain on the right side - sharp excruciating pain when I try to stand up straight. I called the oncologist office yesterday after taking Advil and ice packs and am walking hunched over so I can get around but now my back is aching because of the odd walking. The oncologist ordered naproxen 500 mg and I'm taking it twice a day with food and alternating heat and ice packs on my right buttock at the injection site. The oncologist office said it sounded like sciatica inflammation from the injection. This is so painful it is debilitating, and I'll be calling them again on Monday, if it does not start to improve. I was in tears earlier today from the pain. Anyone here ever dealt with this problem? Any advice would be appreciated? If you've dealt with this, how did you treat it and how long did it take to go away? Thanks for your help. 🙏
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ShetlandPony - I'd like to join you in reporting this adverse event also. Our symptoms sound very similar after reading your post just now.....I believe my situation is from “technique" of the new nurses. Ive always had a middle-aged nurse, seasoned, give my shots with no problems. But this visit I had two new, very young nurses - one gave me the shot on the left side and the other the shot on the right side. I stand and lift my leg that is getting the injection and also get one shot at a time. Best to everyone on this thread, Sharware
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Update from a Fanny Pack Veteran: All good here on the cancer front since I went back on Faslodex alone. This month my hair finally stopped thinning so much from the Ibrance, which I stopped taking in September!
I've had both Covid jabs, with chills and fever from the second for three days, but intend to keep lying low until more people are vaccinated. I have a bone scan and chest-abdomen-pelvis scan coming up Tuesday.
Unfortunately, I learned recently from a nephrologist that poorly-controlled high blood pressure over time has irreparably damaged my kidneys. If someone at my oncologist's office had paid better attention earlier, this might not have occurred. I got a new PCP right before the pandemic hit and have only seen her in person last February. On the bright side, a little pill seems to be doing its job and keeping my BP in a good range. Too bad that medicine has become so specialized.
Tina
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Tina,
I'm with you on the specialization of medicine, and I was very interested in what you said about your kidneys. I watch my blood test numbers (certain things) and while on Ibrance and Faslodex combined, I saw my kidney numbers bouncing around a bit. My MO said nothing until I brought it to her attention. My first blood pull on keytruda, they seemed to have stabilized, but now they are bouncing again. So --- my MO is a board certified internist as well --- you would think that she would refer me to a nephrologist, wouldn't you?
Along that line, what was it that caused you to go to the nephrologist? I'm curious, because of what I said above. Also, your story about your primary care physician comes a bit close to home. I haven't seen my primary in over a year -- she corresponds with me through one of her nurses or med techs. Not even sure if she's watching my labs. Aargh!!!!
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Tina, congrats on the cancer front and both Covid vaccines albeit with SEs, darn it!
Very sorry to read of your kidney damage. What stage is it? My DH sees a nephrologist for stage one. His pcp referred him after his numbers suddenly weren't good and followup blood test showed the same.
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Hi ShetlandPony,
Thank you for your thorough essay, - I can fully relate to these insights.
The pain in my lower back, buttock and leg is not gone, but lessened the last couple of days. My PT has been working on trigger points, and instructed me to do various exercises etc.
I will be having my next shots on Wednesday; following your shared experience I have decided to try a prophylactic dose of ibuprofen, to try to minimise inflammation from the start. I am guessing we are dealing with inflammation affecting the nerves...
We will see how this goes. I hope my routined nurse will be doing the injections; I am interested to know, if she can shred some more light on this side effect....
Warming up the muscles prior to injection also sounds like a good idea. I will switch on the heat in the car seat driving to the hospital, and try to warm up the muscles right before the injection....Due to covid restrictions I'm hoping I'll be alone in the waiting room while warming up the syringes, ...and now also my buttocks ...🤣
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Bliss, the nephrologist diagnosed it as hypertensive kidney disease, Stage 3b. I'm now on a new BP medication in addition to the diuretic I've been on for years. He also sent me to a urologist to have my bladder checked; it's fine.
BevJen, I see my monthly blood test results from my MO visits. When I notice something out of wack, I ask him about it. Most of the time when I've do this, I hear something like "It would have to be double that to be of concern" or "We're looking for trends."
However, my creatinine has been consistently in the high range (1.55 to 2.33) since April 2018 and my eGFR in the very low range (20-34) since August 2017. Not wanting to be "that patient," I brought this to his attention several times over the years, then dropped it.Three months ago, out of the blue, my oncologist announced I might have to see a nephrologist. I asked why and he responded "You may have to go on dialysis unless your creatinine goes down."
HUH? WHAT?!? If he wanted to scare me, he was successful, but what the heck was I supposed to do? And why hadn't he said anything before? Doesn't he look at my vitals, my blood test reports? Guess not.
He didn't bring this up again until I did two visits later, after my rheumatologist insisted on seeing me and my latest blood tests before she renewed a prescription for an NSAID I had been taking for years, so I brought her a few recent reports from my MO. She told me I could no longer take that medication because of my kidney numbers,recommended I see a nephrologist and gave me several names. So I told my MO at my next visit. He approved of my choice and we said no more. I commented at my last visit that my blood pressure was much improved.
Yes, I am upset. And not sure what to do.
Tina
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Wow, Tina, that's some story.
Don't want to hog this thread, but I think this is one of the biggest problems in American medicine. The compartmentalization of specialties is just so ridiculous. My DH says it's because doc don't want to get sued, so they don't want to step into anything. But literally -- that is one crazy story. My creatinine levels aren't there yet, but this is a lesson that we should watch everything and not expect our docs to necessarily be doing it.
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Wow Tina, that is a crazy story! I think it shows we must "be that patient" as our own best advocates without apology. I'm so sorry this has happened to you, but thank goodness your rheumatologist referred you. If I remember right, it was my DH's rheumatologist who referred him to a nephrologist, too. A couple years ago, he did have a Stage 0 - thank goodness - bladder tumor removed, but his kidneys were fine at that time. The nephrologist took him off or changed some of his meds. Keep us posted on what the nephrologist recommends. In the meantime, reaching out with a virtual hug.
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Just want to say I was side sleeping the other night and noticed pain and a lump on my left side and then my right - not buttocks, but just below the hip joint. Haven't ever noticed this before, but feels to me like something related to Faslodex shots like maybe the meds settled there? I've been massaging and now they're better, but I'll be watching for this now in future!
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Hi Ladies - Wanted to pass along what I found on the AstraZeneca faslodex website under Injection Site Reacton: Use caution while administering faslodex at the dorsogulteal injection site due to the proximity of the underlying sciatic nerve. Sciatica is an injection site related event. I have been getting these shots in my dorsogluteal site (behind on upper butt area) but am going to ask about the ventrogluteal site (on the upper side hip area). My pain after one week of dealing with sciatica is about an 8 down from 10 taking Naproxen and sitting more than walking. The oncology nurse told me it would be a slow recovery but I’m still angry to have this issue due to poor technique of a new nurse after 14 months ofshots with no problems. Where do you get your shots? Butt (dorsogluteal) or hip (ventrogluteal)? Best of luck to all of us!
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Because of my MS mobility issues, I can't stand up for the shots. I lie on my side and the shots are always given in my hip. Flip over, repeat. This works best for me and my onc nurse, who has pretty bad arthritis in her hands. I am only about four months in so I may not be the best example. This nurse is very experienced and talented with needles so I trust her choice. She always gives them. I would be really worried if a different nurse showed up. It will happen when she takes any days off. I assume I am not allowed to lock her in the building or tie her up, right?
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Jaycee! I like the way you think! Trust me, if I could find a nurse like her, I’d tie her up too!
....praying I get a good nurse when I go back in. My thigh, knee and foot are numb right now but still significant pain in my lower back and butt. I’ll probably be feeling pretty good by the time I go back to get my next shots and will insist they put them in my hip area now and NOT the behind. ♥️ Sharwar0 -
Do any of you have a change in your taste buds right after your Faslodex injection? Today was only my second round of shots and both times I feel like I’m tasting the medication that was injected into me. I have to suck on mints just to try to get a break from that yucky taste.
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Hey Rosie -- yes -- last time after my shots, I burped (excuse me
) and definitely tasted that castor oil taste -- yuck!0 -
Sharware, wow, I'm so sorry you have this sciatica pain. Definitely refuse to let that nurse do any more of your shots. If you feel up to it, tell your onc or the head nurse that she needs better training so this does not happen to another patient. Everything I have read about nursing and faslodex shots says that the ventrogluteal site is safer than the dorsogluteal in that it is not near the sciatic nerve, but that few nurses are trained to find it and comfortable using it. So most use the dorsogluteal. I also read that the ventrogluteal site is a smaller area, so it may not be great for injections that are repeated every month. But it seems like the best thing for you right now, for sure. Check ahead of time to make sure someone who knows how will be available.
So today was jab day and I put into practice all the plans: I took an ibuprofen as soon as I was called back. I explained to the nurse (second time I had that nurse) my history of unusual and severe pain related to three of my Faslodex cycles in the past year, and the ideas I had come up with after talking to PT, and she was so great. First she gave me the requested warm packs (so I could warm up my glutes) which I put into my back pockets immediately. Then I told her it might help me to know how she would find the correct site to avoid the sciatic nerve. She told me about using the upper outer quadrant, more toward the hip, and also about using the Z-track method. So she knew her stuff. And now, having explained it to me, she was doubly focused on everything she had been trained to do, right?! She took care to make sure the syringes were well-warmed, even having me hold them to approve. She did some massage of the muscle, and lightened her touch at my request. She made sure the selected spot was not a sore place, and went very slowly with the injections. When I felt some ache beginning, I told her and she paused until it went away. Then afterwards I used warm packs and massage for about half an hour to prevent lumps, then I switched to the cold packs she had given me. I used these for about an hour. Four hours after the injections I took a second ibuprofen. So we did everything we could with technique and to head off inflammation of the nerves and/or fascia. So far so good....I plan to take a photo before removing the bandaids each time so there is some record of the location. Well, I can't take the photo myself. "Oh, Honey! Will you please take a picture of my butt?"
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Rosie, I can smell it in my breath.
Jaycee, maybe you can ask your good nurse who she recommends as her understudy. And maybe that nurse can come and observe next Fas day.
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ShetlandPony - me too! I was telling a coworker that I couldn’t stand my own breath since I was wearing a mask in the office and my exhaust was making me ill.
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Hey all, I'm joining this thread, hoping for the best- had my first shots which were far more serious than I'd imagined (geez, invent a better treatment!!) and am heading for the second round of shots already next week, there will be three of these appts just in March. Not looking forward to it they were painful- the nurse said best is to walk it off, and that heat could make it worse by making it more inflammed at the injection site, ice is good, but walking best. She also mentioned constipation? I will be going back onto Ibrance soon, after a month break, but just got my second Covid shot today so I want to recover from that first
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Cure-ious! You're here on the Faslodex thread. Ya, now you know first-hand why we are so eager for that oral SERD. But getting the shots should not hurt so much. If you did all the things like warm up the syringes and relax the muscle, then maybe the nurse is giving them too fast. Mine today took five or ten minutes each. Did you stand or lie down? I have concluded that I need heat for the first half hour only, along with walking, to make sure the syrup does not sit there in a lump. But after that, yes, ice to reduce inflammation. No constipation here, but then I am on neratinib. After those first three sets, it is a relief to go to once-a-month shots.
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