Faslodex Girls Thread
Comments
-
Thanks Sadie, that makes me feel better! I too had a PE on diagnosis, but nothing like this! They’re talking pleurodesis to seal the lung....a bit concerned about what that might do long term, but will talk it through and decide. Yes I’d noticed hands and feet seem to be an issue so will be very vigilant on that...don’t want to be any more disabled than absolutely necessary.
BTW can anyone enlighten me on the Magic mouthwash folk keep mentioning? I use corsodyl daily just now, but sores also seem to be a thing on Xeloda.0 -
Karen, I'm sorry to read you've had progression. So glad they've figured out the breathing issue and wish you good luck with the draining, that you get good relief and the fluid doesn't come back! I took Xeloda for several months, but never experienced mouth sores. I'm not sure what the "Magic Mouthwash" is either. In the beginning of my tx with IV chemo I had mouth sores and treated them very successfully with water, salt and baking soda. I think the recipe was a tsp. salt with 1/2 tsp. soda in about 16 oz. water. You need to swish around several times a day. To remind myself, I kept the bottle in my bathroom, so every time I was in there I'd rinse my mouth. I hope Madame X treats you well and works well for you.
0 -
Hi Karen,
I think there are several formulations for the Magic Mouthwash. I’ve had a couple prescribed by my Cancer Agency to deal with mouth issues related to Verzenio. The most recent included a steroid - I use it sparingly. Having said that, I had no experience with mouth sores with Xeloda so perhaps you don’t need to worry about that yet? Hopefully not going to trouble you.
0 -
That sounds encouraging Bliss and Sadie. We’ll see how it goes....breathing first I think!
0 -
Karen, yes breathing first. So scary to not have breath. Sending good vibes for Monday!
0 -
Karen, so sorry to hear of the progression. I thought most of us do well on Faslodex for a while at least. I'm hoping that's the case of course.
Monday I have scans. First since last January. Its been a HiGHLY stressful yeàr with family so I'm a bit concerned... Almost 4 years for me. I know you will all be with me. Thank you. I'll keep you posted.
0 -
Hope your scans come out well. If your MO suspected progression, she surely would not have waited so long to rescan. Do let us know.
0 -
gailmary, crossing my fingers for good scan results. Do keep us posted.
0 -
Thank you, Bliss and nopink.
Saw MO today. He says he's got this new technology where he can enlarge scan images larger than life without blurring them. He now believes the 3 tiny 2mm spots on lungs that he has been watching is cancer. One spot is 8mm. Thought possibly a nodule. Not sure anymore. Too small to biopsy or show with petscan. No, will not change treatment at this time. He thinks the faslodex has it under control.
I reminded him that I had a lung nodule 13 yrs ago, the first go around with breast cancer. He said that was a different location. Question:. Do lung nodules move around? Or maybe the location of first was labeled wrong?
He was still not interested in putting me back on Ibrance. Maybe if tumor markers go up. Will depend on lots.
Rescan 4 to 6 months. Depending on how I feel and tumor markers. I didn't expect he would go another whole year. I'm good with that. For now anyway.
Sure would be nice if a simple blood test could tell you if and where. . .
0 -
Well, time for me to bid adieu to the fanny pack. I had a good three year run but received word today that the mets have spread to my liver. Damn... I had very strong suspicions it was failing when I had issues with skull mets in August/September and more recently have been dealing with right side pain. Still, it's knocked me for six for the moment.
Wishing you all great success with Faslodex. It's a powerful treatment and kept things stable for me for a long time. Hope you all get even more time on it.
0 -
I'm so sorry to hear this Sadiesservant. What is your next treatment? Wishing you the best.
0 -
These last shots I got certainly were jabs! Had them last Friday and my rear is still sore. This nurse was not good at it and hope I don't get her again. First time it's happened. Felt like she was twisting the needle or something.
0 -
Must be the weather! My GP caused big bruises and I could barely lie on one cheek for a couple of days!
Jackie, we're going to try Xeloda again but monitor very closely. If the pain increases then we stop after one cycle. If it's okay, we will try three cycles and then rescan. Fun times!
0 -
Sorry to hear about your progression Sadiesservant. I hope your next line of treatment gets all of your mets under control indefinitely!
0 -
Anyone else get big lumps in your body from the Faslodex shots? I know they go away over time but next shots are next week and I still have lumps from the last time! Any ideas how to minimize them or is this just something we have to deal with?
0 -
Hi Cowgirl. I just assumed the lumps were permanent after three years of pokes. Wish I had a suggestion for you.
0 -
Cowgal, for me it so depends on who gives the shots. This last time was the first time I had pain afterwards and developed knots in both rear cheeks. This was the 1st time this nurse gave me the shots and hope she won't again! I think these were my 6th jabs.
0 -
Well, I am not sure if the following is helpful or just venting, but here goes. At least we can all commiserate.
I used to think it was the nurse’s fault if I have problems, but now that I have been on Falsodex for a year, plus four months in the past, I’m not so sure. My take on why we sometimes get various kinds of pain, bruises, or lumps afterward is...nobody seems to know! I have not been able to discern why these things happen some times and not others! This seeming randomness is frustrating for a problem solver like me. I am at an NCCN cancer center and have my injections done by nurses who care almost exclusively for breast cancer patients. It may not be operator error, because I have tried several nurses more than once, and there is no consistency regarding the severity of problems I I end up with each cycle. I recently asked for a particular nurse whose shots caused little pain during injections or in the days afterward. I thought I had found my perfect Fas nurse! But then next time I had significant, long-lasting pain — same nurse.
The nurses can't tell me why, the doctor can't tell me why. They suggest that sometimes a blood vessel or nerve is hit, and they have no way of seeing where they are. They suggest I am in a difficult position not having a lot of real estate to work with. I even called the pharmaceutical company's patient info lady and she was clueless about even the existence of some of the "side effects" that happen to us. I don't call these side effects. I call them injuries. One theory I have is that the body involuntarily tenses various muscles in spite of our trying to relax while getting the injections.
Tangandchris asked if tailbone pain was normal. I had this and it scared me, but no, it was not bone mets and it got better. Another time I had fairly severe lower back pain that needed several days of ibuprofen. Currently I have pain on one side from buttock down the back of my leg to the knee, and it lasted the whole four weeks. Among other things, it hurts to lift my leg to put shoes on, to turn around while backing up a vehicle, and to lie with that knee bent. It was getting better, then I tripped and apparently using those muscles re-triggered it. Some cycles I can lie on my buns when I sleep that night, and others I can’t do that for a week or more. Some cycles I have mild soreness for a couple days and then am pretty ok, others I have problems.
Cowgal and Bliss, I do think that the painful lumps may be caused by the syrup pooling instead of being dispersed, and that walking and using warm packs for an hour or two after the shots has helped me avoid the lumps. The nurses give me the the warm packs to take with me.
Also, I do think that if the nurse has good technique she can minimize the pain during the actual injections, including the initial poke and as the drug goes in. Going very slowly is important. If my leg starts to ache I ask her to pause, then resume once the aching subsides. Also, according to my reading, it is not uncommon for the substance to go into skin instead of muscle, if the nurse does not use good technique. I can understand this causing lumps and rashes, in addition to reduced effectiveness. And it is important that the nurse know the anatomy and avoid the sciatic nerve.
This can be a difficult treatment, and I believe we all have a right to ask for a different nurse if we believe that will help us.
I want to say to any newbies reading, that not everyone experiences problems. Some women, pajim comes to mind, can use Faslodex for years with little trouble. I seem to be on the other end of the spectrum, as with other treatments, and often get the severe or unusual effects.
Finally, sending good wishes to Sadiesservant and Karen moving to new treatments.
0 -
Shetland Pony - I do walk after the Faslodex shots for a little bit and try to drink a lot of water. What are the "hot packs" that they give you? Are they like the things you put in your gloves in the winter to keep them warm? I got my Faslodex shots yesterday and I told the nurse last month about how bad it made your urine smell for a couple of days and that at first I wondered what was wrong but found out it was a normal side effect. She told me that she had never heard of that side effect. I told her that it was because all of the rest of her Faslodex patients had more manners.
0 -
Cowgal,
I had to laugh when you said that the nurse said she'd never heard of that side effect (the smell of the pee.) My MO told me that, too, when the NP was in the room, and they both swore that they had never heard of that SE. What? As you said, maybe others were just too polite. I had it every month that I had a faslodex shot.
My nurses used to give me cold packs, not hot. I think some people prefer one over the other. They are just the packs that hospitals and docs use when you need heat or cold -- my nurses used to "crack" them for me so they would work. They only last for a little while -- maybe up to an hour. But they should provide them to you if you ask.
0 -
My logic is that the warm pack helps the syrup get moving so it does not make a lump, then later a cold pack can help with pain and inflammation. I wish there were some actual studies and explanations that would help us and the nurses know the best way to manage things.
Chemical-smell pee, yes. But how about this: The last two times I had my shots, maybe thirty minutes later I noticed my breath smelled unpleasantly odd. I can smell my breath because of the surgical mask I am wearing as a covid-19 precaution.
I discovered something handy on my recent Fas day. My new jeans have
A pair of perfectly placed pockets for packs to prevent painful pooling.
So I wore the warm packs as I went to my next two appointments.
And here is a bumper sticker slogan, for the rear bumper of course: The Poke is No Joke
This is what happens when I can’t sleep.
0 -
Hi ShetlandPony,
I also experience pain in my buttock and the pain varies, down on the side and back of the thigh, sometimes on the outer side of the calf, just below the knee. MO checked my very recent scan with the radiologist and nothing there could explain the pain, so now I have been referred to a PT. We will see if he can help me; he examined my hip and found no problems there, but he found a really large, severe trigger point in the buttock, massaged me and gave me some exercises.
He and I are guessing that it could be the Faslodex shots irritating the muscles and nerves, or maybe sclerotic mets or osteoporosis in the lumbar area irritating the nerves, - in all three cases I am guessing that unfortunately nothing much can be done.
I have a great nurse, so the actual shot is ok, and I only have a little local pain, that subsides after a day.
Everyone stay safe,
Meja
0 -
I have noticed that there seems to be a fair amount of us on Faslodex that now are suffering back pain and pain in the legs. I started Faslodex a little over a year ago. I did not have any back pain issues and I don't think I ever had sciatica. A few months into getting Faslodex, I started having pain in my lower back but it actually ran down into my buttock and down my leg (sciatica). I tried doing stretches and walking more but it got progressively worse to the point that it was hard to walk very far and when I woke up every morning my pain was a 10 and I had to walk a minimum of 30 minutes around in my house so that I could even sit on the toilet. I called my MO and he had me get a MRI to see what was going on. The MRI showed a bulging disk in my lower back, a cyst in my lower back, and some other degenerative issues. They did determine that it was not cancer. I have since been to a spine surgeon and I received some injections in my back, had physical therapy that didn't help me too much and was told by my physical therapist that I would need to have surgery. I do not plan on having surgery at this point as I am doing better (not great but no longer is the pain so high in the morning that I can't sit on a toilet) and I am not sure that we know what the root of the pain is so why would I want to be operated on. I obviously had all these things wrong for awhile and never had back pain so my DH and I are convinced that it is from cancer treatment...whether from chemo, Faslodex, Ibrance or XGEVA. I really think it is from the Faslodex as it is a listed side effect. It would be helpful if we knew what kind of back pain Faslodex has caused and why it affects some patients that way so we know if it is Faslodex as the root cause of some of us with back and leg pain and may know better how to alleviate the side effects. I have done quite a few things to help improve my back pain and sciatica and will share those if anyone is in need of some suggestions (not trying to sell or promote anything, just didn't want to make this post any longer than necessary).
0 -
Cowgal,
I would suggest that those folks, like you, who seem to be having a problem with faslodex go to the manufacturer's website and message them about the issues you are/have experienced with faslodex. Yes, they could be caused by one of your other drugs, but that's for the manufacturer to determine. It would be useful info for them to have, and also provide info that could help the next person who goes on the drug and has the same reaction.
0 -
Hi cowgal,
I for one would appreciate if you could share some of the things you have done to relieve the back pain and sciatica.
I am sure others may experience the same issues. My symptoms started after about 6 months; I did not have these kind of symptoms prior to the Faslodex shots.Thanks,
Meja
0 -
BevJen - Good idea. I think I will contact Astrazeneca. It seems like every time I look on their website I stumble into something I didn't see before. It does mention back pain and sciatica. I will ask them if they know if these issues resolved over time for these individuals who reported these side effects and if they had any other advice on it. I forgot to look and see if they mention anything about the smell of urine after injections.
Meja - Sorry to take so long to get back to you. We are having a bad cold snap and we have to make sure we have our livestock ready for the winter storm that starts tonight.
Things that I think helped:
I no longer get my Faslodex above the rear.I now get them in my hip.I plan to contact the manufacturer and ask if they can elaborate on if the sciatica and back pain resolved over time on the drug or when a different injection site was used.If the pain dissipates over time, that would be helpful.
Switching sides of the bed with my husband so that my good leg is the leg that is nearest the edge of the bed and I could use my left arm to swing me upright keeping my body straight and letting my legs go to the floor.
My spine doctor and PT both told me to sleep flat on my back and that I could have a pillow under my head if I wanted. This was painful and didn't help at all. I find that I do better elevating both my upper body and my legs and feel much better in the morning than how they told me to sleep.My upper body I use a wedge and several pillows and on the legs I use several pillows but no wedge.I found that one night when my leg fell off the pillow at night that the pain was much worse in the morning so I know something about this configuration is helping.
Ice and heat have both worked at different times.
My MO put me on gabapentin and I think it takes a while to work but I think it has helped some.
I did do dry needling at the suggestion of my lymphedma therapist and I think that it helped to break up some spasms in my back.
I try to avoid leaning over and bending over as this does hurt my back.During the day, it is better than first thing in the morning.
I have done some nerve flossing.
My lymphedema therapist showed me two stretches on an exercise ball that helped some and I also use a little gadget (two tennis balls held together with duct tape) that someone else recommended to put at the lumbar area and move around on it and I think it kind of works to relax the trigger point.
I have tried a lot and it is significantly better than where I was for a lot of last year but I am still not healed.I will try to think of anything else that may have helped. Good luck! I hope you get your back to feeling better!0 -
Meja, your post is interesting. My pain is in the same location you describe, and I too have just gotten a referral to PT, having suggested to my onc that maybe they could help me. Interesting that your physical therapist found a trigger point. Did the massage and exercises make any difference for you, even temporarily? If part of this problem is in the muscles, I would think PT could help us. Last Fas day I explained what was happening to the nurse, and she pressed on me and found a sore spot to avoid and a not-sore spot to use, which I really appreciated. I agree cowgal — when trying to solve a problem, we want to understand the cause(s) if we can. So we could really use more details about the “back pain" “myalgia” “pain in extremity” and “sciatica" listed as very common side effects. Exactly where? What kind of pain? How long did it last? Any idea why it happened? I am getting the feeling that this problem has not been properly heard, noted, and addressed by oncology professionals. My onc is very good about quality of life and help with side effects, but the doesn't have anything to offer me (except the referral I asked for). They have good ways of addressing nausea, skin problems, etc., but this is like an orphan side effect. Bev, you make a good point. We need to report to the drug manufacturer. We need to document this and see what can be done. It would be easy for the professionals to say our pain is not related to Faslodex injections, but as others here have said, I did not have these problems before Faslodex. And there have been I think four bad episodes for me.
As soon as an oral SERD is available, I will ask to get it in any way possible and go off my clinical trial, using the same other meds with it. (I get Faslodex, herceptin, and neratinib.) Are you listening, doctors and researchers? I am willing to go off my very successful trial to get away from these awful injections. You know, a few years ago an oncologist led a study on afinitor mouth sores, showing that using a regular steroid mouth rinse enabled patients to stay on the drug and avoid a horrible side effect. It is now standard of care to prescribe this rinse to patients taking afinitor. We need some research and solutions, too.
Cowgal, it sounds like they have switched from the dorsogluteal (butt) site to the ventrogluteal (hip) site. Everything I read about this says that many nurses are trained and comfortable with dorsogluteal, but that ventrogluteal should be used more because it avoids the sciatic nerve. But I don't want a nurse to try to hit the smaller ventrogluteal site if she is uncertain about it. Our cancer centers need to step up and get some expert training for their nurses.
0 -
Hi cowgal,
Thanks, I hope the winter storms aren't to hard on your livestock. Out of curiosity may I ask where you live ? In Denmark we are also having a very cold winter, and a snowstorm should hit us later today.
I would also be interested to hear if the manufacturer can cast some light on these side effects.
I also experiment with pillows during the night, and now mainly sleep on my back with a pillow under my head and under my knees. Yes, heat can ease the pain for a while. I sometimes use an IR lamp/blanket, but the pain quickly returns.
I haven't tried dry needling, thank you, I will look into that.
I do quite a bit of walking, light exercise, flossing and short sessions on the exercise bike. I can't really tell if it is helping, but it is not making it worse, so unless the PT says no, I will try to maintain doing exercise, it so helps my mental state.
Hi Shetlandpony,
Honestly I am not sure if the massage of trigger points has helped, ...yet, ...or the exercises to strengthen the buttock muscles. I think, I need to give it some more time, ...my next session with the PT is on Thursday, so we will see. Like you, I am also on Herceptin, but I do believe it is the Faslodex that is causing these problems.
I lean towards, that it is somehow affecting the muscles (and/or tendons), either directly or generalised due to the lack of oestrogen/blocked receptors. This started 5-6 months after I started this treatment, maybe due to some sort of accumulative effect.... If this is the case, it may get better ....but I may be dreaming. But I would really like to stay on this regime for a long, long time.
Do you know how the approval of the oral SERD is getting on in the US ?
Usually, the FDA approval will be faster/earlier than the European EMA approval.
Thank you both,
Meja
0 -
I have recently been diagnosed with MBC and was recommended that I start Faslodex. Haven’t started yet since they are working with the insurance company. I’ve read the recent posts about back pain and now I’m concerned about taking it. I’m almost 50 and have had scoliosis all my life, so back pain is not new to me, but I don’t want it to get worse. Should I talk to my doctor about this
0 -
Dear RosieRed,
I was on letrozole for many years, and on faslodex for about a year and a half. If you have any concerns about any drugs that you are supposed to be taking, yes, you should discuss them with your doc. Absolutely.
As far as faslodex is concerned, I think some people have issues with their backs and some just don't. I had a few issues, but I also have extensive degenerative disease/arthritis in my spine and hips, so I probably would have had those issues even without faslodex.
Good luck. I found faslodex a pretty easy drug to be taking.
0
