Faslodex Girls Thread
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How did this trial work for you? (Faslodex and GDC-0032)? I may be starting it soon--between this and another trial. I have a PIK mutation.
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Thanks all. I do feel badly that others have more trouble, but am happy that I do not. This drug should be easy for everyone!! Ah, well.
Last month was the first time I hurt. Hopefully tomorrow will be more like the other 29 times.
I saw my masseuse this week (long story but I'm rehabbing a frozen ankle and she's helping). She felt the lumps and was ready to kill the nurse. "What did they DO to you?!?" So nice to have sympathy! I don't get much of that.
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I have the lumps in my butt! Ugh, I should have read this thread before getting the injections. My butt is still sore.
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anyone on faslodex and zometa hat has trouble breathing?mi take a deep breath and start to cough. It really scares me. DH said it's a side effect. I don't know. Thanks, Rachel
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hi all. New to posting but I've been reading for awhile. So encouraged by this community. I am currently on zometa and faslodex. Couldnt tolerate other AIs and herceptin failed me
Question: today out of the blue I have swollen blistery lips and inner mouth. I started faslo in april I think. Zometa since September. Anyone had anything like this? Can't attribute it to anything from food drink environment etc.
Not feeling great for awhile so of course I go immediately to bad news. Will see mo in two weeks.
Thanks for existing as a community.
Sally
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Sally, that does sound like an allergic reaction to something that may or may not be the drugs.
Rachel, side-effects are a very personal thing. Your shortness of breath could be the drugs, the castor oil or something else altogether,
I spent the morning getting Zometa and Faslodex. I think it's round 30 or so. I really should add it up. Took an hour for the pharmacy to mix the zometa. Sigh. On the other hand the nurse was very well educated about Faslodex. No pain, no gain, and hopefully no lumps. (Of course it'll still take a bit for the ones from last month to dissolve. . .)
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Wanted to run this by y'all and see if anyone encountered this. I have been on Faslodex since February of this year. Each time I go for shots, there is a different nurse giving them. I had approx. seven double injections since February. When I got my Faslodex shots last Thursday, once again a different nurse, administered the shots, on each side, but as she did this, she grabbed skin from my buttock with her index and thumb, then gave the shot thru the grabbed skin. It hurt very badly, in the beginning, during and when finished, and on both sides. This is the first time I had some difficulty with pain and wondering if it was because she grabbed fat from my buttocks then gave me the shot with the fat she grabbed. Has anyone experienced this?
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naturegirl, I'm a total novice at this, but are you saying she only grabbed skin and fat, or did she grab deeply enough to get and inject into the muscle? I would think it would make a big difference if she possibly didn't get the product into the muscle.
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I've been on the shots since January and had to ask that one of the three nurses not give me the shots as she hurt me both times she injected. That said, none of the three nurses has grabbed anything - not skin or fat - sounds like that might be a technique whose days should be numbered - phone the charge nurse or the navigator at your clinic and tell her what has happened and ask if you can stay with one or more of the other nurses - I've been told that it's o.k. to do that (at least by my charge nurse) - certainly we don't want to be hurt when being treated - we have enough going on.....
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dlb, and 208sandy, thanks for your input. dlb, it all happened so fast, I was a taken back by it. I don't have any excessive flab or fat and quite fit, weighing 135 lbs and working out 5 days a week on my treadmill. So why she did that is beyond me. All I know is none of the other nurses did that in the past since Feb., and now wondering if the faslodex actually got to the places it should. 208sandy, I'm going to call and find out about it. I would have loved to request one nurse in particular and even asked if she was there the day I was scheduled for the shots. She was there but was assigned to the chemo section that day according to the nurse that gave me the shots that day. I can't keep track of the names of these different nurses either. The facility I am being treated is quite a large hospital/clinic. Input from others?
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Well, I've only had 1 set of shots so far, and the tech told me ahead of time that she was going to grab and pinch each butt cheek hard, which would make me not feel the needle as much. I'm also slim (115 lbs.), and she redid her grasp several times on each side, to be sure she got a deep pinch that included the muscle. I was pretty satisfied that she'd done an excellent job, but I still had just a tad bit of hardness at the injection sites.
So sorry that happened to you. I'll also be interested to hear what others have experienced.
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anyone else on coumadin taking faslodex. My onc is concerned and suggest I sit for an hour after maybe ice packs. Going to start ibrance this week. Thanks
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Carol, I saw your question on another thead earlier and hesitated to respond, since I just started Faslodex and am not on a blood thinner. But if I was in your situation, from the little I know about Faslodex and the potential for bleeding, I think I would want to ask my onc two things -- (1) Injection site is one thing, but isn't the far greater risk possibly internal or other bleeding that could happen if you were to fall, etc.? I mean, I'm not sure worrying about the injection site(s) is the major risk when they caution about doing Faslodex with a blood thinner. (2) Also, since the product (Faslodex) is thick and viscous when cold (the reason it needs to be brought to room temp before injecting), does immediately applying ice to the injection area make the product thicken up again, or has most of it been deposited deeply enough that wouldn't be an issue?
I hope you don't mind me thinking out loud, even without much experience with Faslodex or blood thinners. It's just my nature to want to question things I don't fully understand. Deanna
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thank you for good questions! I go tomorrow and will discuss . I do know she is going to test my blood 3 days after shot and weekly so can adjust coumadin. Just failed on tamoxifen,femara, etc.
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thanks dlb for your reply. I'm surprised they did that, (pinched your buttocks.) Do others have that done as well? This will be the last time ANY nurse will do that to me as it really really hurt, from beginning of injection all the way til the end. All previous times I was given my faslodex shots, I did not experience that kind of pain.
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I'm also fairly fit, and do not have a lot of padding in the cheeks, but my nurses have NEVER pinched me to give the shots. If they get the faslodex to room temp and inject slowly you should have minimal pain, and minimal lumping.
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There is a certain technique, called the Z-track method, that is preferred in administering these injections. Here's a link to an oncology nursing journal article. Note Figure 2, which illustrates the technique.
http://media.oncologynurseadvisor.com/documents/44...
Tina
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Tina, Your information is correct and so important in giving deep intramuscular injections. Pinching or other attempts to pull at the gluteal mass only distributes the medication in a wide manner and potentially misses the muscle. It is a tough situation and my nursing students always feel successful with less pain to the pt. with the ZTrack. As a patient myself it seems much less painful to stand and keep all pressure off the leg side to be injected. It really does help to turn the foot on that side with the toes turned inward. After injectionI try to remember to message the injected buttock....it also helps. It has been 18 months and after thr first few months....it does get better and really is fine by the end of the day. Peggy
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Tina, Thanks for the interesting article! It confirms what I suspected about one of my shots hitting a nerve. I see I am scheduled to have the same nurse again this time. Swell. (Literally)
Peggy, Thanks for chiming in with your expertise. Talk about seeing things from both sides!
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That article was really interesting, Tina. So if you aren't a nurse or nurse educator, Peggy, and want to share this with our onc's office, how would you go about it for the best response, without coming across as finding fault with or being critical of their technique?
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dianna
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Deanna, I would suggest talking with your oncologist and passing on the information to the nursing education department at the oncology center. I have found that it is easier to talk directly to the oncology nursing department. They are very receptive to any pt information that provides for better outcomes for their patients. As for the ZTrack method of dispensing intramuscular medications such as Faslodex, a few in service sessions should provide the nurses with all that is needed. As a "senior" nurse (now retired) the ZTrack method was relatively new when I graduated from my diploma program in the late "50s". It was only used for dispensing thick IM medications. At about the same time antibiotics were being transitioned from thick IM drugs to intravenous preparations .....bye ZTrack. So nurses prepared after the 50-60s had little need to become familiar with the older skill.
Early Taxane oncologicals were thick with castor oil added and more difficult to administer... then Abraxane emerged via a nanoparticle process. Don't get me started. Maybe someday for Faslodex? I am so grateful for my distance with Faslodex and Herceptin. Peggy
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Hi Fanny Friends,
My memory is so bad, I'm not sure if I introduced myself here. I don't have much time for posting (I'm back at work) but do try to keep up with a few threads. I appreciate all the info on administration and it's just in time for my month two shots on Thursday. My nurse doesn't take two minutes to empty the syringe but I do take the weight off my leg, she warms the syringe (so she says) and I massage and walk around after. I get the lumps that actually stick around but the soreness fades after a day or so. I'll try turning my toes in and ask that she go slower.
Wishing us all the best with this tx for a long long time
Lisa
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Welcome to the Fanny Pack, intothewoods. (Every time I see your name, the song starts playing in my head!)
Over time I've noticed that my butt is now permanently sore in saucer-size areas around the constantly re-insulted injection sites. The other night I turned my torso in a theater to talk to someone, hit my "upper outer quadrant" on the arm of the seat and actually yelped in pain and surprise.
How embarrassing. I blamed my hip.
And another thing: is anyone else here RAVENOUS? I've noticed my appetite has increased to an alarming degree in the past two months.
Tina
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dlb823 got my shots yesterday nurse used z track method . never felt a thing this time. She was shocked when I told her about the pinch! Method. This first time they did put cold gel packs on sites just to make sure the injection site did not bleed. Said the cold would not go as deep as the needle and drug did. Asked about internal bleeding she stated does not effect coumadin levels only danger is art injection site if they hit a blood vessel. They checked my INR was 2.1 in the range they like 2 to 3. Thanks again.
Ibrance to come in the mail tomorrow. Wish me luck with the WBC.
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Oh Tina I hope it's a song you like. Yikes! It didn't occur to me that it could put a song in someone's head they HATE :-) I love being in the woods, love love love Sondheim and I find the song metaphorical.
I'm not noticeably ravenous, but have packed on a few pounds even with a much increased energy level of late which I attribute to now having only the single agent, faslodex rather than the Ibrance with it. (for those taking Ibrance, I was one whose white cell count dropped and didn't come up even on the lowest dose so my onc stopped it. He doesn't consider me having actually failed letrozole, just that my one bone met was more active). I'll have to really start monitoring my food intake and see what's up. I'm a shrimp so a few pounds on me is a lot!
After all your injections I can imagine you are sore. I feel the bump even though I get the next shot tomorrow and it's only #3. Hey, I just thought of another Sondheim lyric from the same musical that's fitting: She has lumps on her rump big enough to be a hump. (referring to the cow) No offense to any of us. I'd better stop before I get myself in trouble.
Have a great Wednesday day everyone
:-)
Lisa
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That's great news, Carol! Thanks for sharing. Did you have to ask about the Z track method, or did she just do it? I really want to share that article with my local onc's office, but they are "touchy" (in an amusing, competitive way) about the fact that I also go to UCLA, and I want to be sure to offer the information in a way that will be well-received. I'm also a bit wary of being their first guinea pig, if they aren't familiar with it, so still not sure what to do.
Lisa, I've read this elsewhere and I think it's a good point to remember -- You didn't fail (to any degree) Letrozole. Letrozole failed you.
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Lisa, no worries: I am a charter Sondheim fan. I could quote him for days!
Tina (whose withers wither with her)
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I had my third month shots yesterday. I have never been 'pinched'. I've had a diffferent nurse each time and they've all recommended standing up for the shots and taking the weight off each leg. The faslodex is kept in a fridge and neither it nor the needle has been warmed up. I've experienced no problems other than the usual pain at the injection site and a deep ache as it's being injected. The tenderness disappears after a short while. Only thing was that she didn't put a dressing on the injection site until I noticed that I was bleeding.
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Aoibheann - the shots really should be warmed up to room temp before administering - that's why you're getting the deep ache I believe - I do stand for my shots but don't lift my leg and it is fine - as for not having a dressing....
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