Faslodex Girls Thread
Comments
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Pam: A sincere "thank you" for starting this thread. I checked the old Faslodex thread when it was first prescribed for me in 2013. After a delayed start in 2014,I was so happy to find that you began a new Faslodex thread with all useful tips in the opening posting. Hope you will have a "SE easy" new combo treatment. Come back to visit us.
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Pam, you are breaking new ground for us, and I hope the new protocol will be wildly successful! I will also miss your input here, but anxious to hear great reports from you going forward. Hugs, and keep us posted!
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Pajm, I am really going to miss your posts here! You've always been such a great source of information and support, I hope you will stop back once in a blue moon and let us know how you are doing. I am curious, did you and your mo decide on the change based solely on TMs without a scan? (Not questioning your decision, I know how smart you are!) I hope you get another good long run on A/A with Ibrance. I think you'll have to pioneer a new thread for that combo. Your opening post has been a blessing to so many butt buddies. A million thanks and as many good wishes on your new tx.
Shetland, Forgive me for not welcoming you to the pack earlier. I am sorry your shots have been such a literal PITA. I'm amazed when others report no pain during or after tx, that has not been my experience either. I will say it gets easier and less painful as time goes on, AND it got me to NED in 6 months. Hoping the same or better for you.
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Hello, jobur! Ok, it's not just me, then. I will keep reminding myself why I am doing this. Why do you think it got less painful for you? Fantastic that you got to NED!
I'm trying to understand what exactly causes the pain so I can figure out how to treat it. I mean, is it the volume of stuff in the muscle? Then I would think more massage or heat might help. Trauma from the shot? Then maybe aspirin or ice. A chemical injury in there? Then some other drug? Does anyone have any information?
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ShetlandPony, could be several things. (Making up theories here. . .)
First, the Faslodex is dissolved in castor oil (yes!). They're injecting castor oil into your rear end.
You're a dancer, right? Then your muscle is tight to begin with. It probably hard as a rock and injecting 250ccs of anything into it will be a problem. Us flabby types have enough space between the muscle fibers to absorb everything.
Are they injecting high enough on the hip? And lastly, sometimes it's simply bad luck.
Massage does help but I don't try for the first week. whilst I don't get pain during the injections, pressing on the injecting site is really sore for about a week.
[Jobur, my scans were some healed but several new lesions. Once not feeling as patient as last time. And the TMs rising. I estimate I could hold on for another 3 months, but then I can't get AA WITH Ibrance. I think that'll help more than the three months I lose. At least that's my line of thinking and I'm sticking to it. I refuse to second-guess myself]
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Pajim, right, do not second-guess. You and your onc know what's going on and have made a smart choice. Same here.
From what I can tell, the nurses used correct locations. Actually, I am not particularly strong (not a ballerina). In fact, I've had physical therapy to address injury and weakness. I believe the cancer drugs lowered my tolerance and my ability to build strength. I found the best practice guidelines for intramuscular injections and learned there are two main sites to use. One of them targets a particular muscle that I have struggled with, and I think that's the one the nurse used this week. Very afraid that it will impede me for an upcoming performance. I have a call in to the nurses to ask if there is anything that will help. Right now, just walking hurts. It is frustrating that in the case of Faslodex, my onc and I must follow a particular schedule of loading doses that happens to be really bad timing for me. The worst. (Whereas with Ibrance I could take a week off if I had a big event.)
The nurse just called back. They think the problem is the volume of the injection for someone of my size. They recommend ibuprofen since the trouble is in the muscle, and also warm packs. I'm very glad to have some direction. I don't like taking more drugs, but in this case I will do it. Thanks to all on the thread offering support. Definitely a case of finding people who really get it. (Monthly!)
Here is a link to the article "Large-volume IM injections: A review of best practices"
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Shetland - this may have been mentioned here before but I didn't read all the thread. A dear friend of mine on this thread (she'll recognize herself) suggested that I point toes inward toward other standing knee. You may want to point your toes inward even if lying down. It's supposed to relax the butt muscle. That's my two cents as a novice!
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Pajim, I hope you didn't think I was 2nd guessing you, no way! I just believe you and your onc are a savvy team and was interested in how you came to your decision. And cudos for refusing to 2nd guess. Some of us (guess who?) should follow your example.
Shetland, Ibuprofen and heat sound like good ideas to me. I get my shots on Tuesdays and the pain is usually gone by Friday. I prefer to stand on one leg while leaning over a chair with the knee on the injection side resting on the chair, toes pointed toward the standing leg. Deanna originally mentioned the toe thing and I think it helps. I'm not really sure why the shots seem to hurt less now. Scar tissue? Attitude adjustment? I find I get used to most anything if given enough time. Hope you stop hurting before that important performance. The article you found has been posted here before, but good reading for those new to Fas.
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Linda, your comment got me thinking. I'm going to experiment at home to find what way of lying allows me to relax those muscles the most. Since we take such a long time for each shot, I'd like to be lying down. But I'll experiment with a chair too, like you suggest, jobur. Yes, I really do need to go back and read through the whole thread, now that I'm sort of oriented.
Two ibuprofen (400 mg) and a warm shower did reduce the pain for quite a while.
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Question: I had my first loading about 10 days ago and felt great until now. Out of the blue I'm achy all over, nauseous, exquisite headache and a bit dizzy. Is it usual for SEs to appear more than a week after the shots?
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I will be joining you all in this treatment soon. Femara and Ibrance failed, leading to many tumors to the liver, entire spine, a few ribs, pelvis and hip. A little disappointing after almost 5 years of no real progression. I'm hoping this is an easy treatment, but the thought of the shots is not thrilling to me.
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Hello, Mzmerz! I'm a newbie, too. I've gone twice for loading doses so far. Take heart -- Faslodex can work even when aromatase inhibitors have failed. And my onc says Fas has the fewest side effects. Other than its being a pain in the butt. I hope you turn out to be one of the people for whom the shots are no big deal.
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Welcome to the fanny pack Mzmerz! The shots take a little getting used to, but it is a pretty easy tx for most. Instead of shutting down the hormones, it shuts down the hormone receptors, so as Shetland said, it can be very effective even though Femera failed you. I only got 9 months out of anastrazole, but Fas has gotten me to NED. Hope it will do the same for you newcomers!
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hello all. Got my first shots today waiting on the ibrance to come. Small spot appearedad on liver, sad, hoping this combo gets me back to ned
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Has anyone on Faslodex only had a long run with other than bone mets? I see long timers on Fas but have not remembered any of them being lung or liver mets. The most remarkable responses seem to be bone mets only.
So....any of you long timers (over 12 months at least) only liver or lung mets?
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Goodbye girl, I will be on Faslodex 6 years in April and most of my mets have been in my hip, spine, ribs, lumbar etc. I do have a small lesion on my liver which has been behaving at 6mm for 2 years now. A few small spots on my lung. I think you may be correct that the long timers may be predominantly bone. What were you on before Fas? Any others chime in?
Lvin, Mzmrz, welcome to our group.
Linda, Feeling better?
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GoodbyeGirl, grateful long-timer here. I was diagnosed with lung mets in 2011 and have had no progression (knock wood) in my lungs or elsewhere. I've been on Faslodex the entire time. It started working within the first year and the lung mets have been metabolically inactive on scans for years.
Tina
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Welcome to newbies, I'm a newbie myself. I had my second loading this morning with a different nurse, I must be one of the lucky ones, no pain in the butt!
Shetland - Are you feeling better, less pain?
Lindalou - It was unrelated to Fas, just caught a little bug.
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To be honest, Linda, it took a week just to be able to walk without pain. But I am a problem-solver, and have figured out a new position that will relax my muscles even more. Also, having read the best practices article, I will talk with the nurse about the two possible injection sites. I believe the site used for my first dose was better than the one used for my second dose. Also, I will make sure she is using the Z-track method. Finally, I have just accepted that these shots are just going to be a pain for me, and plan to use ibuprofen and warm showers before dance class or performances. It's great that your shots are going well, and I will share in that happiness!
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I got my third dose yesterday and tried it lying down (or is it laying down?). The shots didn't hurt so much but ohthe soreness kicked in by dinnertime! I'm having some jaw pain and was worried about necrosis but they said it was just TMJ. I was ecstatic to just have a regular TMJ diagnosis like a regular person. At least they said my platelets were good so I can take some Advil!
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Linda, I was on letrozole for years before the lung mets were discovered. My onc speculates that the mets were there from the beginning and that the letrozole kept them in check. May be correct since it was already in blood stream when treated.
Tina, were your lung mets ever biopsied....VATS, etc?...to confirm their current hormonal status at the time of met diagnosis?
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I've been experiencing a lot of nausea since getting the shots. About 4 hours after the shots, it hit me hard. No actual vomiting, but it was just awful. Spent the weekend in bed sleeping. Monday I felt a lot better. Tuesday pretty good, today, sick again. I was hungry and Hubby went to our favorite area dive to get a good burger and fries. Before he returned, I started feeling ill and I could barely have 3 bites before giving up, taking a zofran and going to sleep. I'm really hoping this is not going to be the new normal. I've already lost 6 lbs, but I'm tubby, so not a horrible thing. When I had chemo in 09, I developed a type of food aversion because of taste and nausea issues, and I really don't want to go through that again. Other than that, no real SE except the bum pain. I'm a side sleeper so finding creative ways to lay.
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Mzerz, I experienced some nausea (not as bad as yours) after the first few doses, but if I remember right, it didn't continue after the loading doses were complete. Hang in there!
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GirlWAC, Only in cancerland would we consider TMJ good news, LOL! Hope you get relief soon as it's still no fun. Good for you seeing the positive, sure beats ONJ!
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GoodbyeGirl, yes, the largest of my lung mets was biopsied and indicated ER/PR+.
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Question for those who have been on Fas for 4 plus years. I've developed some moderate to severe pain that seems to be located (but feels really deep ) near the spots where my shots have been given. It isn't sciatica but can spike to a 10 for pain when I stand or sit or get in and out of the car. I'll be talking to MO in a month but before we jump on the mets wagon, I was wondering if any of you have experienced this? I've had close to 75 shots on each buttocks but only the left is giving me problems and guessing that some muscle damage may have occurred. I ice, use a lidocaine patch, and of course pain meds but it isn't going away. I'm sure he will order an MRI as he mentioned that briefly. Ideas?
Edited to add: Just talked to my neighbor who has a PhD in PT. He thinks it could be Piriformis syndrome which is a neuromuscular disorder and that it may have developed after so many shots ( trauma) to the area. Can be very painful and inflamed and irritates the sciatic nerve.
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Mzmerz, about the sleeping position--Each of my three doses so far have been in different areas, and required a different sleeping position. I also prefer sleeping on my side, and got a lower backache one day from sleeping on my back too much. Then I remembered to get a second pillow to put behind my knees/thighs. Ahh, much better.
Twice I have had a headache at some point during the few days after the shots, and last time I had some nausea in the car on the way home. But nothing major. Hopefully these things will go away as we adjust to the meds, as jobur indicates. Girlwithacurl, I find the soreness worse in the days after the shots than the day of the shots. Now during the shots, the left side stings and the right side aches. Any tips for the aching, anyone? It must be a nerve as it goes down the side of my leg (not sciatic nerve).
Linda, that's terrible. What can be done for piriformis syndrome?
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hi all. I noticed yesterday after laying in the sun I started to feel nauseated. Is lying in the sun a no no with falsodex? I don't remember reading that, but maybe it's just a coincidence. I just got my first two loading shots last week.
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I haven't read or heard anything about the sun and Faslodex. Nausea, though, is fairly common (26%) according to the list of side effects I read. I had an episode of nausea the day of my third dose, but that was it. I suspect that for a lot of us it just takes a little time for our bodies to adjust. It seems like an easy drug for most, apart from being a pain in the butt.
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yea literally a pain in the butt lol
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