Faslodex Girls Thread
Comments
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Hello All,
I see several familiar names from the Ibrance discussion.
I just had a long conversation with my MO and it looks like I'm moving from Ibrance and letrozole to just Faslodex. (She is looking at a clinical trial with Faslodexplus something else too.)
Anyway, other than the sore injection spots, what are the main side effects of only Faslodex?? Hoping for better blood counts and more energy???
Thanks!
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Kaption, I think you will find Faslodex alone very easy after Ibrance. The main se's for me were increased and very sweaty flashes (sorry for the TMI) and some increased joint pain. But as letrezole seems notoriously bad for joints, maybe Fas will be an improvement! No fatigue either when on Fas alone. Hope you get great results and find it an easy tx.
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Thanks, jobur! That's what I'm hoping
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I'm on fas alone and se that upsets me the most is constant fatigue (I've been on it for 16 months) - I manage to get things done by resting in between activities - I've had some insomnia as well but must say it is an easier tx than some.
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208sandy, sorry to hear that. Fatigue is what am hoping to escape from Ibrance. Hmmm..
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Kaption, Guess I am lucky as well as I do not get fatigue from Faslodex. Just some pretty achy joints, my knees and fingers in particular, and hot flashes like jobur although the flashes have diminished a lot. Other than that I feel very well but am getting ready to start up Ibrance again (with the Faslodex) ...
I got MAJOR fatigue from that. Maybe the lower dose will be kinder to me.0 -
Artist-hoping I'm like you
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me too Kaption! Most women I've read posts from seem to find it very do-able!
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Kaption - I am on Fas alone and I love it. I haven't felt this good in a year. I do have the hot flashes, but they are diminishing - this will be my the start of my fourth month on the drug. I don't have fatigue much, but do have achy joints - especially my hips and my knees. I find all that extremely manageable after doing 6 months of IV chemo. Good luck!
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Thanks, MustangIA. Hopeful!
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Funny how the tolerability is all relative, isn't it? I consider myself very lucky. On Ibrance I sometimes feel like I'm pushing my body through mud, but I don't feel tired.
I feel bad for those of you who feel a lot of fatigue and gastric distress.
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Tomorrow is my meeting with the NP to discuss my Faslodex. I've been off Ibrance since June 3. MO said to stay on Femara until I start Faslodex. Haven't felt any great improvement in energy yet.
It will be interesting to see what the NP says. Glad I have info from you all to take with me.
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Just got scan results back and had some slight progression in current tumors although no new spots. So it is off Faslodex already and on to Anastrozole with Ibrance added which I have never heard of? Anyone been on this combo or Arimidex alone? Any advice?
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Artist....I have had Arimidex alone for about 6 months but I have not heard it being used with Ibrance. Perhaps the Ibrance thread can help you out there. Sorry Faslodex is out for you.....Just to let you know, I have been on Faslodex for many years with slight and slow progression. I may be adding Ibrance too as well if my wbc can get better. My best to you as you decide what is best for you.
Kaption, let us know how your appt with NP goes.
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I'll have my second injection this Thursday. No problem with the one 2 weeks ago, except I just noticed a thickness and a bit of tenderness at the injection spot on my right side. Is that usual?
Hoping for a long run on just Faslodex
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Hi Artist, arimidex plus Ibrance is the same as Femara plus Ibrance. You could also add Ibrance to Faslodex (which I did and my tumor markers are headed back down).
Kaption, that's normal. Sometimes big lumps, sometimes little ones, sometimes nothing at all. It depends on the nurse, how fast you push the injection, the composition of your rear, and just plain luck. It should go away. Think of it this way -- they're pushing 250ccs of castor oil into your rear. Can take a little while for all that to go away.
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Hi! New to the bottoms up girls... Only had one shot so far and its a week till my next poking and I had a question. I seem to have started the worst case of PMS I have experienced in ages and I cant figure out how faslodex works with estrogen. Mood changes are not listed on the side effects anywhere but I havent had trouble with anger issues in ages. The past three days have shown a frightening increase in rage and if this keeps up Ill end up a story in the local paper. I know Im tired but this is an outright murderous rage, not a could use some coffee type irritability. I am taking the med against my wishes and better judgement but that shouldnt create an urge to run over dumbasses on the sidewalk that cant pull up their pants all the way. Came right close to doing that yesterday.
Thank you for any insight you can offer!
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Mustang, Glad you are liking Fas so well after chemo. Hope you're having a great summer!
Artist, So sorry to hear you had slight progression. Seems like you just got here (here being the Fas thread). I was on Arimidex alone as 1st tx. Pretty easy tx, though after I was off it I realized it made me very depressed. So if you find yourself feeling down for no good reason, it may be an se. I just heard of a trial going on in Canada where they pair Ibrance with different AIs, Arimidex being one of them. Hope it is good to you.
Kaption, Glad your first shots went well. The bumps and soreness are normal as Pajim said. Are you feeling any less fatigued? I took a month off Ibrance this winter and it seemed to take most of the month before I really noticed a difference. I think it will come, but very gradually.
Pajim, I really didn't need to read about the 250cc of castor oil getting pushed into my rear the morning before I go for my shots, LOL! How have you been feeling since starting Ibrance? I see you started in February, my how time flies! Hope you are enjoying your summer too.
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Has your Onc given faslodex a long enough time to start working, Artist? Has she considered adding Ibrance to it? It's good you are working on a second opinion.
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jobur, I haven't quite been off a month yet(last Ibrance pill June 2). Can't say I feel much more energetic yet- I'm also fighting a sinus infection. Started an antibiotic for that. So, maybe when I'm done with that and have my blood count built back, I will perk up. Thanks for asking.
Mascarecrow, I think I might contact my onc to report the mood swings. Hope you are doing better today.
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Mascarecrow, Faslodex is a powerful estrogen inhibitor. Depending on how much circulating estrogen you normally have, it will definitely bring on typical menopausal mood swings and other issues. However, if you are actually having thoughts of hurting someone and/or a lack of impulse control, that definitely needs to be reported to your onc. Feelings of anger and even rage definitely come along with a bc dx itself, no less a de novo dx, which it looks like yours was. Many NCI-designated cancer centers provide psychological counseling free of charge as part of their evaluation/care, and even smaller hospitals usually have an oncology social worker available. In addition to letting your onc know exactly what this med is doing to your thought process, it sounds like you could use some counseling to deal with what I'm guessing is a lot of suppressed anger. It's all totally normal, but you may need to get some coping skills and/or temporary meds to keep yourself and everyone else out of danger until your body adjusts. (((Hugs))) and hang in there... vent to us here for support... but do take it as a serious SE that needs medical attention if it's as bad as you're describing. Deanna
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I get that rage feeling when I take steroids and try to avoid them. When I do take them I insist on getting ativan which does help a lot. Like 3mg. I haven't noticed it with faslodex but I do have a lot less patience lately now that I think about it. I like this drug and I even feel better on it than I did before so if that is what's happening to me, to a lesser degree, everyone better just stay out of my way!
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I have been on Faslodex for over 4 years and seem to remember reading about back spasms.
I have had really bad back pains in my lower left back for about 3 months. I am now getting PT for it, but it doesn't seem to be helping.
The PT people think that I might have done this when I tore my left miniscus in October, which threw me off-balance.
But since the PT isn't helping, it made me wonder if the Faslodex could have caused this?
I can't sit for longer than 10 minutes, since when I stand up, the pain is horrible and I can't walk for about 10 minutes until the spasms stop.
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Denny, I also have back muscular pain (not spasms) between my shoulder blades. I have been thinking it might be related to my meds but didn't see this as a side effect of faslodex. It can be very debilitating and I have to lay on a heating pad. It happens pretty much daily and gets worse as day goes on.
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Thanks Lindalou, My Onc said, because I have tumors in my liver, that she did not want to risk them taking a bigger hold if the Faslodex is not working. I went on the Ibrance thread and yes, there are others taking this combo and the literature says it OK. I just had such high hopes that this med would last a long time and it was so easy, so Rats! Pam, Were you on Faslodex alone and your TM's were going up? What about your last scans? I was hoping we could try adding the Ibrance to Faslodex too. Shetland I plan to ask at my 2nd opinion appt. which I already have on Thursday whether we should have give it another bit of time. Mascerecrow, I know your feeling crummy is not funny but your comment about pulling up the pants was....You too HLB, LOL!
Thanks jobur, Seems to me like I just started too so am feeling pretty bummed about it. My first two Arimidex pills made me nauseous as heck for several hours. This mornings may have had to do with a empty stomach so need to eat first I guess. Just what I need is something else to cause depression or mood swings. I will keep my head up, thanks!
Denny, Sorry you are feeling crummy. I wasn't on Fas that long but I had a lot of stiff joints and achiness including my lower back sometimes would really hurt. Hope it's nothing too serious and clears up soon.
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I am wondering about the location of the faslodex shots and what you all think is the best place to get it. The first ones were at the top of the butt muscle, above the butt crack and kind of in the center of each side. The 2nd time was a different nurse and she did them more towards the outer part but just as high. Right away I felt it go down the outside up my upper leg and that area on each side became numb for a few days, then sore. I'm getting them tomorrow (2 weeks later) and it's still sore so I'm not looking forward to it. I'm 👌 with the short term pain of getting the shot but I wonder if I should ask them to go towards the center more. Another thing she did was pinch the skin and twist it so that when she let's go it will untwist and let the medicine stay in better. They do warm it up and so far have been good about going slow, but certainly not 1-2 minutes. Just wondering what kind of soreness and where you all find common. Thanks, Heidi
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HLB, they have a prescribed "L" zone they are supposed to conform to. My second time with these shots, I had a girl who seemed a little daffy and not careful. She did it sort of fast and I think it hit my sciatica nerve as I had a pain down my legs for over a week! My favorite nurse was so good at it I never felt pain.
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Thanks for that info artist. I'm going to ask for them more to the center and not so far out. I felt bad for the girl because she hates giving shots and each time she stuck she said "sorry".
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HLB, I get my shots really high towards the sides -- not towards the center, which is where the sciatic nerve runs. Last time (#10), for some reason, one of them hurt a lot going in. Otherwise, I've never had a problem -- no pain and no lumps..
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Hi All,
Mine are like Deanna's, high and to the side. Yesterday I had a different nurse give me the shots ( mine was on vacation) and she did it really fast. Darn. Sure makes a difference in how we feel as opposed to getting them slower.
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