Faslodex Girls Thread
Comments
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Cristina, I have been on fanny pack for over 2 years, always get the shot on Thursday afternoon and schedule massage on Friday evening or Saturday (after some walking exercise on my own). Remember to tell the therapist to use long medium pressure strokes (not deep tissue) on the injection sites.
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I had shots on Monday and a professional massage yesterday. Suddenly on one side my hip and lower leg are killing me??? Think I need a big walk in the sunshine....
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MyJ60, Did you get your shots staggered yet or did you get just one side? I've had sciatica pain on my left side for quite awhile now and yes that pain can be tough.
Tiger, I have scar tissue now too ( have had Fas for almost 5 years now) so that makes it harder for needle insertion my nurse said. She tries to change the site, just a tiny bit, but is hesitant because of proximity to the sciatic nerve. Some times the shots are ok and others, really hurt.
Christina, there are good suggestions at the beginning of this thread if you haven't already seen them. I too agree to massage the area and also walk. It does help some.
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I've noticed that several of you are on Faslodex and Ibrance - could that be what is causing the lumps? This is the Faslodex thread - perhaps if you get on one of the other threads where people are on Ibrance too there might be a solution to be found. I've been on it since January 2015 and so far no lumps BUT there used to be a nurse who was sooooo heavy handed that not only did the shots hurt I was bruised for a few days afterwards. Honestly, the walking afterwards seems to be the key.
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Had mine (#38?? who's counting) yesterday. I've noticed that this particular nurse seems to cause me a little more pain and a little more in the way of lumps. Others don't. So it can indeed be handler error (so to speak).
Actually I think he injects a little to high on the hip. Or maybe his hand shakes a little (he's older). Or maybe it's his style. Who knows.
As for my scans they were "about the same, maybe one spot a little brighter" but tumor markers up 20% AGAIN, now reaching 370. I started Ibrance last night. No idea how it will do for me. I feel like a druggie. I'm now taking FOUR meds for this cancer. Not counting the colace and the antacids I'm about to start.
I know, no complaining. I'm still alive and pretty much kicking. But if I can't complain here, where can I complain??
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There are definitely people who are better than others at giving these shots. I wish it was not so awkward to request a favorite....Pam, Ibrance did me very well besides the liver enzymes. I had significant shrinkage. I hope the same for you and everyone else on it. I was bummed to have to stop. Hey, complain away. You have listened to all of us long enough in return! None of this is fun in any way.......
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artist, I fretted a bit the first time about requesting a tech whose technique I prefer, but if I see her there and ask, they have always seemed totally happy to accommodate my request. It doesn't seem to hurt anyone's feelings, and they've never asked why. I just say something like... I saw Josie's here today. Could I possibly have her do my Faslodex shots? It might be worth asking if you have a preference. It probably doesn't make any difference to them. They'll just take the next patient instead -- at least that's been my experience.
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It's only been 2 weeks since my last set of shots and I have been massaging the one side that seems to have quite a large lump, still sore on both sides, I'm guessing because of the scar tissue. I wonder if it is just me but it seems that I have additional padding on both sides, could this be from the scar tissue? I do think it depends on the nurse giving the shots, but one side seems to hurt more than the other and I always bleed quite a bit on the right side. I try to eat healthy but not always successful and a brisk walk each day but mainly I believe I have been blessed to be NED since being on the shots for 3 years. Do any of you that have been long term on the shots have the extra padding I am talking about?
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Deanna, I did actually actively complain about one nurse who did my blood draw twice and both times it was painful and I was bruised up for a week! They now steer me to another. I go to a very small center and the one nurse I like is going on maternity leave. Hopefully the other two I have had are not the only ones left but I will ask, thanks! The one I had the other day was a little less gentle than my favorite and I had pain in my hip that radiated down my leg for 2 days.
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Thanks for the suggestions, I will make sure to massage and walk next time in a few weeks. Every time I am about to get my shot, I always whine in my head that I don't wanna do this, I wanna quit, I can't do this...and then I get through it. But I have to admit, I'm not having any spectacular results. Nothing has shrunk since starting, just pretty much unchanged, with tumor markers going down a bit, but then they have crept back up in the last month. So at the next scan, we'll see if I remain on the Faslodex/Ibrance/Lupron or switch things up to a new combo. I don't think I have scans until April though.
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artist-is your professional massager versed in chemo? Not all massagers are. They need to know the lymphatic flow too, and be licensed in that.
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Denny, I did not really ask her that as I haven't done any chemo yet, just AI's. I would imagine she is because she is employed by the cancer center. But will make sure to ask her next time. I wonder if my massage has anything to with my collarbone being achy and tingling since she did some massaging there. Isn't there lymph nodes located there? Thanks Denny, I will find out next time.
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artist-There is always the threat of lymphedema if your nodes were checked/ removed or even if you had radiation. Chemo doesn't cause lymphedema.
Yes, there are nodes in the collarbone area. I have cancer in my supraclavicular node.
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Denny I haven't had any surgery, chemo or radiation. I started out of the gate Stage IV and immediately went to AI's. Good to know though as I go down this road. Sorry to seem so naive, this is all so new and overwhelming! Need to make more time for studying so I am more informed.....Thanks for the info! Be well!
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Artist-how great that they can treat you first with AI's!!!!
I have been dealing with this for 14 years and this is the first time I have heard of that. So we all have tons to learn.
Good luck!
Denise
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Joining your ranks today. I get my first Faslodex shots at 4:15 this afternoon. Thanks for all the helpful tips - hopeful I get a long run on this.
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Good luck, Mustang! Be sure to read the info' at the top of this thread -- both things to watch for and speak up if they're not about to do it right, as well as things you can do to ensure a good experience! Let us know how it goes! Deanna
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Denny, I think because I had mets immediately they said surgery was not an option. The way she explained it to me was that they do not want to bring out the big drugs, IV chemo until necessary, try to keep the cancer at bay with AI's first. I am pretty sure there are other Stage IV women who have started with AI's?? When I read the literature for Femara/Ibrance it is described as first line treatment for metastatic BC patients postmenopausal who have not had any other treatment. Maybe a fairly new protocol? Hope they are correct.......Welcome Mustang!
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Okay - had the first shots yesterday. It wasn't awful at all, although today I am a bit tender in the fanny.
I walked in and the first thing I said - are they warmed up? My nurse chuckled and said of course and pointed to them in a cup of warm water on the table. She then went on to tell me to make sure I don't tense up and be as relaxed as possible (I believe this was another tip you all posted). She told me that the best way to make sure I stay relaxed is to stand as pigeon-toed as I could - she said it is next to impossible to flex your butt muscles in that position - damned if she wasn't right! I leaned against the counter in my pigeon toed position and she did one at a time. Barely felt the stick, and she paused several times to make sure it didn't hurt going in. It really didn't! I then went for a long walk at home to make sure I didn't get too sore, but alas, today, it is a bit tender. All I kept telling myself is - it is so much better than chemo! It is so much better than chemo! In and out of the onc's office in 15 minutes. I will take that over three hours any day! Thanks for all the tips posted above - now, I will just pray like mad it works!
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Welcome Mustang, So happy to hear your 1st set of shots went so well! Sounds like you and your nurse did everything right. A bit tender is to be expected. What tx did you have previously? Hope you get great results from Faslodex with next to no se's.
Artist, I was stage IV from the get go and got the same speech about saving chemo for later. I was told that as we are no longer curable we are aiming for QOL and relief of symptoms. I don't think this is new, but may not have been the case when Denny was dx'd 14 years ago. Tx has come a long way since then!
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Thanks, Jobur. I have done a few things. Here is my rundown.
DX w/ mets to abdomen (ovaries/peritoneum/small intestines) in June 2011.
Did 4 cycles of Xeloda out of the gate due to the mets to the intestines. Got to NED.
Switched to Femara - remained NED until February of 2015 (progression in small intestines)
Tried A/A - didn't work - two spots in right lung
Tried Xeloda again - was working(markers coming down) but couldn't tolerate it this time due to the gastric side effects.
Moved to Abraxane - NED again after 3 cycles. Did 3 more months - still NED. Decided to pull it and save for later as I did so well on it. Switched to Faslodex - hopeful it will work alone for a while, but will add Ibrance if markers move up even a tiny bit.
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Mustang, Wow, that's a lot of different tx. I can see why you were repeating the "better than chemo" mantra during your shots! All those NED periods must be very encouraging though, hope Fas will keep you there.
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Yes, you two are right. Things sure have changed in the last 14 years since my dx. I might not have had to get a double mx had I just been dx'd now.
I sure hope that Faslodex works perfectly for all! I am also on Kadcyla, since I need the additional tx.
Denise
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Jobur, thanks for the response and sometimes I question if I should just blindly follow the Dr's orders or question every little thing. It's a fine line we walk. I did have a second opinion and she concurred with current protocol. I am glad too that times have changed as it gives me some time to adjust to all this BS without too much trauma right out of the gate. I am thankful for that. Although I AM ILC which i have read sort of puts me at a disadvantage whenever chemo time comes....Denny you have been through a whole lot and inspire me greatly! You must be one strong woman!
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Hello, Faslodex Ladies. I may be joining you soon, depending on whether my onc determines it is time to switch me from Ibrance + letrozole. I am a planner-aheader, so here is my question: If a person is going to be sore after the injections, when will that be at its worst? The same day, the day after, two days after? I want to pick the right day of the week so I can avoid being sore for my dance classes.
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Denny, I see you will be 5 years out on Faslodex this year and 14 since diagnosis? That is incredible. I will be 5 years out on Faslodex in April. Now I have a lot of scar tissue and some sciatic problems going on. Do you?
Shetland, Every one is different, but most of us tolerate the injection site pretty well. I'd say for me it is more of an ache for a day, maybe two, but it shouldn't interfere with your dance class, and in fact the exercise may help it. Sometimes it hardly hurts at all. Just massage it a bit after the shot or walk and that helps.
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Yes Shetland, I agree with Linda, I have not had much of a problem with that. A few days after it is somewhat sore, feels bruised, but only right around the injection sites. Although one time only I had kind of a funky nurse and on one side she sort of jabbed me and I had pain down my leg for like a day and a half. You should be able to dance just fine! Wow Linda, 5 years is so nice to hear!
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My "sore" is only if I bump up against a wall. Like a bruise. If you're doing a lot of floor work you might be sore for a few days after the shots. Else don't worry.
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So my scans show Stable to slight improvement for the most part. But she still wants to discuss a few "small" things on Monday. So I am a muted happy for now as I don't know what she has to tell me??? But Stable was a good thing to hear and I get round 4 on Monday.....Hope everyone enjoys a nice Spring weekend. I can thank you all enough for the good wishes.
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Stable is wonderful!!!!!!! Try not to worry about the "small" things. I'm sure she wouldn't have given you a happy report if there was anything overly concerning at this point in time!
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