Faslodex Girls Thread
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Dianarose, I agree. Don't let that nurse give the injections again.
Sandy, no weight gain or fluid retention here; I do not tend toward them. But I did lose my waist (for good) from the start of endocrine therapy, which was tamoxifen. Tina, yes, my naturally bold eyebrows have thinned, especially the inner thirds. They came back after Taxol, but seemed to thin on letrozole and remain thin on faslodex. I like Tarte Amazonian clay waterproof brow mousse, with the two-ended brush. It looks natural. I don't think there is much of a distinction between Faslodex or any anti-estrogen and aging. We are on the accelerated aging program. I cope by doing what I did not do when I was younger: Nice clothes that suit who I am, makeup, a good haircut, generally taking care of myself. Style is not an age or a state of health. Embrace your vanity and go shopping.
Tell me more about taste changes, MCK and others. Things taste weird lately. Either too bitter or too salty. Could this be Faslodex? I have been blaming Afinitor.
News flash: There is a SERD in trial that is a pill rather than an injection. It is called LSZ102. (Faslodex is a SERD -- selective estrogen receptor degrader.)
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Thanks ladies - I feel a little better knowing that the weight gain, swelling, numb feet and taste bud changes aren't just my imagination - but the hole in my ear drum is another mystery - the dr. asked me "how did that happen" - don't know but wish I could find out if thinning membrane is an se of the fas. The eyebrow thing is most annoying but the bangs on my wig are so long that I don't worry too much about filling them in - I've lost my brows at least three times now due to various tx.......
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ShetlandPony My taste changes are very minor and seem to occur at injection time and last for 2 days.It s more of an off taste in my mouth than any aversion to a particular food. I can honestly say that after 5 injections I haven t any other side effects except a few hot flashes.
In terms of weight changes, I have done a complete full circle in what and how I now eat and exercise. I also follow the Anti Cancer book as well and exercise all the time. The key to doing well on Fas is to keep moving I was told and that it would help fight off the side effects. The result is a loss my losing 30 lbs and haven t felt this great in a number of years
Shetland Pony ...I laughed when I read your post about going shopping. I never was much of a shopper but these days I take pleasure in buying that extra purse or shoes. The rainy day has come so to speak lol. Even when I m just going for my injection, I dress up in my Sunday best. It makes me feel good. I get my hair done a lot more regularly and invested more money in some new make up. Why not....I deserve it
I d love to see a pill form instead of the injection.
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I get my third injection on Monday. My right side is sore down the cheek and was numb. It's Like it's bruised to touch. I just assumed it the oil working its way out. I also have itchy cheeks. I'm hoping it will go away as I adjust?
Other SEs are just life. I'm hoping the gas lessens too. I'll have to check out that book/diet. I hate having no waist.
Fatigue and insomnia are worse as is taste but I can't tell how much is fas or ibrance.
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I am still having sciatic nerve pain since my last shots. Will be three weeks tomorrow. I dread getting them again.
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hi everyone, I have not experienced weight gain , taste changes yes , like metal could be why my appetite sucks!! I have experienced some increase depression but there are a lot of factors there!! My hips hurt a lot! Just had 24th round on Monday which obviously means 48 injections !! The nurse went above my previous lumps which are there from last two injections. I hope you all are ok, just remember God loves us and He does not give us what we can not handle but He tests us to the max, a friend told me that. We are strong women so I have been told!! Love you all!!! FYI Fatigue is bad just want to lay down and rest a lot
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Candice ...Hugs to you in the hopes that all goes well with your next injections! I know you re feeling very tired but try to keep moving every 20 to 30 min to help with the stiffness. If you feel God s spirit around you please tell him we re all ready to pass the test! We re at the cancer max I think at stage 4
Dianarose Hang in there honey! Tell the nurses your concern and about the siatic nerve pain you ve been having
Zillsnot4me....I too had a little soreness right up to my 4 th third injection. It was difficult to sleep at night as I tend to turn from side to side. I did have some bruising initially and so called my cancer injection nurse. She said cancer patients gave more of a tendency to bruise with the first few initial injections until the drug kicks in. She also said it could be the nurse hit a small blood vessel during the injection but I didn't t feel any pain during the shot.
Best remedy is to try to walk it out; relax the leg, apply heat and masssge the area. And of course have yourself a glass of wine to keep your sanity. Hugs to you as well in the hopes that today will be pain free
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Thanks MCK54, appreciate your hugs. Of course I will keep telling God about all of you, He loves us all and knows we are strong. Have a great day everyone, I'm at work so have to get going, talk later. LOVE
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I spent most of the day in the clinic yesterday. I have been so sick since my injection. They gave me a bag of saline as I was so dehydrated. I've lost 7 lbs since last Monday and am now so afraid to have my next shots on Tuesday. My onc also sent me for a ct scan as she was cocncerned it might be my brain, as this is a side effect. But it was clear
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Elijay- I get my shots in a week and already freaking out! My ankles are swollen and my legs are heavy and look like telephone poles. I still have sciatic pain but not as bad. These shots are horrible
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they really are. I hate this.
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Hi ladies. Got my 3rd loading shots so now I get to wait for a month in between. Yay. I also started ibrance tuesday and xgeva today. Ive had a few bouts with nausea but didnt get sick. I hope everyone is doing well. Hugs.
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that rill e do nice to go a whole month! I hear the se are much less now. I hope they are for you. That nausea isn't fun.
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Sending happypeaceful thoughts your way along with these lovely blooms tonight.
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TY for beautiful flowers MCK, I am so sorry for the nausea Diana rose, eljay,and melm it sucks I do know the feeling , thought im getting sick sore throat but I think the shot I had Monday my throat so scratchy 2nd time for this anyone else had that I heard sore throst a side effect but this is the first time it's been bad on a better point my last nurse did good job with injection but boy I'm just so fatigued love to al
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Fanny pack ladies, I am leaving Faslodex for sure now. I started Faslodex in 2/2014, soon after Pam started this thread to put all tips in the opening. Fas has been very kind to me in the 3 plus years, almost without any significant SEs. I get massage the day after each injection. My therapist pays special attention to my injection sites. For those ladies having pain after injection, you may want to consider massage.
My cancer is IDC with lobular features. Fas has kept my bone mets stable all these years, but the lobular features now move into my Gerota's fascia (whatever that really is!). So , I have port put back in, wig and hats ready; and willl start Halaven next Monday. Faslodex is easier than most AIs. Hang in there for those of you with pains recently, it will get better.
Tina, please hold down the fort! I hope you have many many more years on this Faslodex treatment.
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My dear Cling,
That's a lot of responsibility, but I will shoulder it as best I can. I am very sorry you are leaving the Fanny Pack and wish you all the best with your new treatment.
I am uncharacteristically grumpy today after my monthly clinic visit. It included a blood draw that produced a surprising torrent down my arm and onto the floor because the new phlebotomist didn't bother to apply a pressure dressing, my Faslodex injections, and a distressingly unsatisfying meeting with my oncologist.
I see him every other month and often want answers from him, clinical reasons for various annoying symptoms/SEs (low RBC, fatigue, weight gain, shortness of breath on exertion, ya da da), and he keeps grasping at straws. I don't know exactly what I want from the poor guy, but it's not to hear him venture that I might have sleep apnea, or that I should take more walks, which is what he offered today. Fortunately he also actually stated that my problems (no biggies in the grand scheme of things, I acknowledge) are probably from the drug interfering with hormones. And I guess he just can't give me any more than that.
This man is as smart, kind, thoughtful and well respected. I like him, but today I think that he and I might be just sick/tired of each other; I have been seeing him off and on since the mid- 80s!
Poll: Ladies, if any of you have stayed with me through this disgruntled post to this point, please let me know how long you've been on Faslodex. Am I really the outlier here?
Tina
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Think so Tina. I'll get my third month in a couple of weeks.
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dear cling sorry u are leaving fanny pal I pray for you and everyone Tina I just had my 24th round Fas still behind you tho been with my once since 1998 (fallopian tube CA first) it sounds like we have a similar relationship as u and ur one I love my guy but sometimes I think I frustrate him I'm a nurse practitioner (cardiology) cause I ask too many quedtions
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Cling I am sending positive thoughts and prayers your way. You and Tina have guven us hope. Tina i have only had 3 injections. Gentle hugs and prayers for us al
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I think you are the longest on Fas. too, Tina. I've been on it since May 2015.
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Cling - sorry you're leaving the "pack" - sending you off with good wishes for new tx but come back and check in with us.
Tina - you're not an outlier - my onc is the same as yours and I DO have the same se's you do - lately I've been in agonizing pain first thing on waking up - at first I thought it was my hip or pelvis but on further checking out when I've stopped crying and cursing it is the site of my injection because it was done by a new to me nurse this last time and the last couple of weeks have been hell on earth - anytime I talk to the onc I am told "no one else is reporting these se's" so of course I have given up - my PCP just says "it's the shots" and gives me a sympathetic look - I am going to see if I can get a scrip for PT because I am convinced that might help - otherwise I'll have to go off the shots or be moved into assisted living and that's NOT going to happen! Glad you're here to "hold my paw"!
S.
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I am sorry to read of so many here having pain and other side effects. I have done some serious problem-solving about injection and post-injection pain, and will type up a checklist if anyone wants it. As far as other side effects I have been lucky. Hot flashes I am used to. I have to say I feel my QOL has improved having stopped letrozole and replaced it with Faslodex. I no longer feel stiff, achy, and 90 years old. I no longer feel like I am always on the verge of injury. I had physical therapy for two different injuries while on letrozole. I think my dancing looks better now, smoother. Except of course the first few days after the shots.
Sandy, that is a terribly dismissive response from your onc, to say that no one else is reporting those side effects. Yeah, they probably know they won't get any help or compassion from that doctor if they report any problems. Tina, are you considering changing oncs? I wonder if a younger, female onc might be better for you now...
MCK, taste changes in the couple days following injections does sound like Fas. Sandy, what are your taste changes and when do they occur? Candice, does your onc attribute your taste changes to Fas? Zills, when I was on Ibrance I did not notice any taste changes, but now things taste more bitter. I don't know if it is Fas, Afinitor, or Dexa mouth rinse.
Zills, lately I have not noticed much of the itchiness and bruised, irritated appearance that I had at first. I don't know if it is because my body has adjusted, or because of my problem-solving efforts, or just chance.
MCK, it is so great that you feel good with your diet and exercise improvements. It seems like these lifestyle things are especially important to us all as a counter to the drugs we have to take. I agree that the book -- I think you are referring to Anti-Cancer, A New Way of Life by David Serban-Schreiber -- is a good one.
Melmcbee, yay for having the loading doses behind you. (Ha, that pun wasn't intended but now that I see it, it has to stay!) It has made a big difference to me to have a whole month between shots. Are you about there, Elijay?
Cling, best wishes on your next treatment. It sounds like you are moving forward ready to deal with it. My wig and caps are stored in my closet, and I still have my port. I hope I can get at least three years on Fas like you did before I have to get them down.
Dianarose, please insist on seeing the best, most experienced Fas nurse this week.
Hello to cive and Aoibheann!
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Yes please Shetland pony. I'd love to know your secrets. This time she hit higher on right so minimal pain but lower on left and have a big goose egg. Massage afterwards didn't help as much as Jin Shin. But it was still lovely.
We had a couple of Shetland ponies growing. Love them buggers.
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thanks for asking Shetland pony. Had my second injection Tuesday. Still nauseous but onc doesn't think it's from the fas. Icky taste still. Taking ondestron three times a day but it's not helping so far.
Maybe after my third dose my body will adjust.
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I started Faslodex and Ibrance on Wednesday. The shots weren't as bad as I thought they would be going in. I put ice on them even though they didn't really hurt. That first night I put heat on them just because I was told to and massaged them a little. It wasn't until the next day that they were sore like a bruise. Now the soreness has wrapped around to the side of my hips but nothing that is intolerable. I started having a weird taste or sensation in my mouth the same day as the shots but before I started the Ibrance. Don't know if it was just in my head or if it truly was happening.
I started the Ibrance that night at 9 pm. My pharmacist was having a hard time getting the pills too! I only got 6 to begin with but finally got the remaining 8 yesterday. They will only give 14 for the first cycle until I have my labs checked and then I will get the remaining 7. I hope they don't have trouble getting the pills for me in a timely matter. I have had a few hot flashes but that is about it so far, except for the fatigue. However, I'm not sure if the fatigue is from the chemo (carbo/taxol) I had 2 1/2 weeks ago or the new medication combo. I guess I will see with time. I have not noticed any nausea, which I am happy about
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hi Fas gals! Well the oddest pain happened this week. We finally got to take our little vacay to the sunny south (I m Canadians from the cold east coast). I had to wait 3 mos. until my Onc wld give me clearance for my travel insurance. Because I wasn't t able to get to an aerobic class I decided to just use the treadmill at the gym. I ll admit I did go at a brisker rate than my usual walking. Anyway now every time I use the treadmill, at night my injection sites start to pain like the dickens. Just wondering if anyone else has had sudden site pain after activity? Could it just be this exercise? I really haven t experience site pain the last few months.
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MCK54: yes I did get pain in hips after vigorous walking a couple days after fas, I also get icky taste in mouth for long time my onc just gives me a smile! So sweet! Could also be Aromasin I guess. My biggy is muscle and joint pain probably a combo of things, my last shot May 15 and then I came down with full blown flu May 18 and am still in and out of bed probably a double whammy there and I took ZPak and at least am eating and drinking otherwise I think I would have ended up in ER from dehydration, now starting cough med! I have not had flu in 4-5 years despite working in Doc office. My luck end of season glubin Florida! Wow am I weak. Love you girls and Happy Memorial Day. Stay well
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Candace You poor darlin' You ve certainly had your share of ups and downs. Hope you get over the flu and feel a little better soon ...Lemon and ginger added to hot water will help.
I took a day off the treadmill and when I went back at it yesterday, I kept my mph down slightly. I was thinking it could be that fast walking on the treadmill works out the very muscles where the injection sites are.
I took an advil and massaged the areas afterwards and I didn't t have any pain. Today I did the same thing but didn't t need the Advil. So perhaps where the exercise was new caused me the discomfort.
The key on Fas is to keep moving it seems!
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Well, no Faslodex shots for me today. My TMs went up again, and my onc is switching me to Xeloda. Another day I'll post the detailed list I mentioned, of the things that helped lessen the injection and post-injection pain for me. But right now I am processing this treatment change. I was only at this Faslodex party for four months! It's a little unreal...
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