Faslodex Girls Thread
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hello
I just had my first set of shots this past Wednesday. My how sore my butt has been. I hope that isn't going to be the case everytime. Any tips around this?
Thanks
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Kell, have you been reading the string back a ways, about proper position during shots? Important that you read all of that. I was told to take Claritin (or the generic loratadine) 2 days before, the day of shots, and 2 days after. I have almost no pain or side effects. Walk briskly after the shots, too, if you can, to distribute the medication. With my first shots, I didn't know about this, and I did have pain for a couple of days. Big difference for me. Good luck! Piece of cake....
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Ladies - Is anyone on ketamine and palexia (tapentadol/nucynta) for pain? I'm currently on fentanyl patches, oxycodone and lyrica (pregabalin) all px by palliative care consultant. I went to see pain consultant and he wants to admit me to hospital, detox me and put me on ketamine and palexia. Not sure about these drugs at all. I don't know anyone else on them. He also preformed a nerve block yesterday and my back is more painful than ever. New parts hurt. Not sure if I trust him but onc suggested I see him...
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Thank you Lynne and Lyn for your replies. I hope I can stay on Faslodex and Ibrance for a long time too.
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Thank you Lyn for your reply. I will go back and read the post. Over all the shots weren't to terrible bad. Happy about that!
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Hello everyone. I’ve read in some older posts about “having a flare” while on Faslodex. Can anyone tell me what this “flare” is and when it happens? I will be getting my 3rd loading dose of Faslodex on Monday and due for a blood test with tumor markers in July before my monthly shots.
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Miracle, my understanding, such as it is, is that the treatment can cause dying/dead cancer cells, the presence of which can cause a flare in the reading.
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Thanks Lynn. In your case, how did you know that Faslodex was working? How many months before your tumor markers started to come down? What about the other Faslodex users, can you share your experiences please?
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Miracle, my doctor seldom checks tumor markers, because in my case they are not indicative. They never vary much in any direction. I was pronounced NED after 16 months of treatment on ibrance, faslodex, and xgeva, at my last set of scans 3 weeks ago. I have no idea which of the three medications or if all three together have provided the success. I'm just grateful for it!
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wow Lynn, I’m so happy for you. NED after 16 months! Are you going to be off these meds then?
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No, unfortunately this is likely to be a very happy but temporary stop along the way. At some point, it is likely to be unavoidable that the cancer will find its way around thiz drug combination, and I will have to go to another line of treatment. It is my understanding that unless a cure is found, we will all be on treatment forever.
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Just found this thread. I am getting Faslodex injections every month - two shots, one injection in each buttock. Initially, the nurse administering the injection had me stand and take the weight off the leg getting the "butt shot." The nurse explained to me that due to the injection material being so thick, she needed to warm the medication before each injection and to administer the shot slowly, sometimes taking one to two minutes to complete the shots.
It still hurt, the medication going in, especially toward the end, and there was no getting around the areas being sore at least a week after getting the shots. I had been instructed that after each shot I could use a heating pad or warm water while massaging the injection site, in order to bring down the swelling, move the medicine through the area quicker, and reduce the swelling and pain.
This worked fairly well for me the first couple of times, but one time she injected the shots pretty fast and it hurt going in more than before. Later the injection sites were more painful and swollen. One side swelled to the size of an avocado and stayed swollen and painful until just before my next appointment for the injections.
I described to her what had happened and how my body reacted. She then decided to have me lie down on the bed in the exam room and she would perform the injections while I "relaxed" on the bed. Wow, what a difference! Yes, I believe she went slower then she had any time before, but there was virtually no pain and minimal to no swelling of the injections sites later.
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Prairie, so glad that your nurses are kind and sensitive to your reactions to the shots and are helping you find the best way. Mine has had me standing with the weight off the "shot side", with that foot crossed loosely behind the supporting leg, in order to relax the shot side. Lying down sounds like another way to accomplish the relaxation of the areas. Have you read the suggestion about taking Claritin/loratadine (the generic of Claritin)? I was told to take Claritin (or the generic loratadine) 2 days before, the day of shots, and 2 days after. I have almost no pain or side effects. Walk briskly after the shots, too, if you can, to distribute the medication.
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I have a question maybe someone might know the answer. After my Faslodex shots, I have this medicine odor over my whole body for a few days. And when I pee it stinks too. Hope that wasn't TMI for you guys. I dont know of anyone notices it when everyone get their shots or its just me. I was going to ask my nurse tomorrow about it but she might think I am a nut for asking such a question, but who knows.
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Neogirl, You are not nuts. Someone on this thread once described her pee as smelling like a barn. Yup, that's about right. I experience it for several days following my Faslodex injections. Yucky, yes, but as long as Faslodex continues to work, I will put up with it. Btw, there is no such thing as TMI on these threads. We all learn by sharing.
Hugs and prayers from, Lynne
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Neogirl,
Many of us experience the stinky pee effect. Like 50s girl, I have it for two or three days after the injections. I assume it is from the drug or the castor oil it's mixed with. In the grand scheme of things, a bit of pungency in the nether regions is no big deal. But it's certainly another one of those many little humiliations we find ourselves enduring on a regular basis.
Good thing we can talk with each other!
Tina
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50sgirl and Tina2- That's what I love so much about this site. We can talk about all this crap. I talked to my nurse today about the weird smell from these shots. 2 nurses were there when I asked. They both said they have never heard of that symptom/experience from anyone. I thought that was weird. Oh well, I will deal with the smell for a few days.
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Neogirl,
My nurse had never heard of it either, but that means only that other patients never brought it up. Many on this site have experienced it . I think women may be reluctant to discuss something so seemingly trivial with their medical team. Also, weeks have gone by since the previous injections and the "fragrance" has long dissipated, so it no longer is on their minds.
Tina
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Oh yes. My "fragrance" only lasted a few days this time compared to a week long fragrance the 1st time I got shots. I am wondering if it was different this time because the nurse I had this time said he was going to use the z-track method for giving me the shots. I wasn't as sore either.
Kathy
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Hey everyone. Dropping in to relate my experience. Been on Faslodex/Ibrance for 16 cycles now. Started having joint problems that were impacting QOL and I begged my oncologist to skip a Faslodex cycle while I went on vacation. It worked, because my joints got a lot better, pretty quickly. When I came back for my next office visit, my doctor explained that Ibrance doesn't work without an AI, so I had to go back on Faslodex, but he ordered just one shot of Faslodex, so I only had a 250 mg dose. We'll see how that goes.
I hope everyone else is doing okay, and that your joints are fine and dandy. Though I also wonder if there are lots of women who accept joint problems without complaint. I don't know if we are doing ourselves any favors by not speaking up. I'm not saying we should stop taking our life-saving drugs, but maybe more resources would be allocated towards therapies that help with joint weakness, stiffness, and unreliability. I was given a referral to a physical therapist, who gave me some exercises out of a book. I went a few times, and then decided I could get my own book, and save the copay. (Didn't notice that the exercises helped at all.)
Joint dysfunction is crippling. We should have more options to treat it.
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NineTwelve, I'm stiff, too, on Ibrance 125mg/Faslodex/Xgeva. I don't know which is the culprit. I intend to stay the course unless it gets much worse. It's all relative, though.
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Hi Lynn. Thanks for the solidarity. I just picked up a book by Darlene Cohen, called Arthritis - Stop Suffering and Start Moving. The author (who had severe RA) got herself to walking and running, from a point of lying curled up in bed in terrible pain, by her own exercise and mindfulness program. I'll post later if this book is helpful for me. If she can do that, I can probably improve my more minor issues.
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NineTwelve, I'd love to know about that book. I think that I have some arthritis, anyway, so it may help on two fronts!
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Hello everybody,
I am Lalit, here for my mother. My mom is 62 years and getting her first dose of Faslodex 500 mg today. She had first diagnosed with cancer in year 2007 (II stage). The disease came back in 2015 in bone and lungs. Since then she has been on numerous chemos and medicines. Rt now it has been progressed to liver. The liver biopsy result showed ER (>95% ) and PR (5%) positive. Our ONC has suggested Faslodex and zoldonet (since last one year she is taking Zoldonet injection almost every month).
I have been reading all the posts of this thread, by all wonderful ladies here. I hope to get some valuable help and guidance from you and your discussion. I hope and pray that this new treatment will have good effect on my mom.
Hope and prayers for everyone.
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Lalit, welcome. Have you read the suggestions for minimizing discomfort while getting the shots? You could help your mom a lot if you become familiar with proactive steps she could take. The best of luck to you and your mom. She's so fortunate to have you in her camp!
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Thanks JoynerL for your warm welcome. Yes, I read the initial first post of pajim. Also, I am going through other past posts on this thread. I will keep updating my mom's updates here and also hope to seek guidance from you guys.
Be blessed.
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sharmal: Good wishes to your young mother (I can remember when I was 62!) I have been getting Faslodex shots for 2 years. Since you have read through most of the posts you should have great ideas. The shots do not bother me that much but I do have sufficient padding in the critical "shot" area. (Do not be intimidated - the shots are not that bad if done as suggested on this blog.) Before I started the shots, my blood work indicated "my cancer had returned". After taking the shots my blood work has improved. I started on Ibrance two months ago so I am on that, Faslodex (500 mg every 4 weeks) and Xgeva (every three months). You and your mother might want to discuss the dosage of Faslodex with the oncologist. The results for the 500 mg shots are much better than the 250 mg.
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Wandering: Thanks for your wishes. My mom had first shot of faslodex today. She was scared initially but the day care Dr. was kind enough to keep my mom busy in talk while she injected the medicine slowly. After the shot she walked few rounds in hospital corridor. I also made sure that syringes are on room temperature. And tried to kept my mom hydrated ( although she does not like to drink so much water as that make her to get up for pee frequently). This first month she will have total 3 shots of faslodex 500 mg with gap of 2 weeks and subsequently it will be one shot of 500mg every month.
Hope you are doing well with Ibrance.
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Hi everyone...My mom is down with lower back pain. And she had headache also but it is intermittent. Have any one faced the same side effect of faslodex? Will it remain few days? She is taking pain relief medicine to deal with it.
I wish a lovely and wonderful weekend for everyone. Thanks.
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I have a question Im sure someone can answer. I had my 3rd set of faslodex shots this morning. I had a horrible nurse this time. She jammed that needle in my butt really quick and put those meds in very quick. She said it had to go in quickly because the meds were so thick.?? I am wondering if I can request to not have that nurse again or would that be rude because all of the nurses talk with each other like family.
Now after about 2 hours since I had the shots, the shot areas are so painful and now have nausea. Can I use a heating pad on my butt or would that make it worse.
Kathy
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