Faslodex Girls Thread
Comments
-
Cathy,
I'm so sorry. May Falodex be your magic bullet!
Tina
0 -
Cathy, I hope Faslodex knocks those little buggers into next week.
0 -
I haven't been keeping up in this thread.
Faslodex Fog - yep, got it (the other day I couldn't remember the word microscope, while I was looking at one!)
Shortness of Breath - yep got that too - started about 6 months in
Arthralgia - yep, count me in - started around February, is getting progressively worse
All of these things are the "less common" side effects of Faslodex.
0 -
Thanks ladies. I have that "fog" too. I thought maybe too many drugs or the stress.0 -
I have not been keeping up with this thread either. Part of it lymphedema of right arm and have been wrapping it with bandages most nights. The other part just life with a lot of fatigue added!
My SE's on Faslodex fog (maybe age), shortness of breath and arthralgia that started 6 years ago with Arimidex but has gotten much worse. I take Cymbalta and Celebrex.
With Faslodex my tumor markers have been in the normal range and my last CT showed no evidence of disease. The CT I had last summer showed a lot of disease in my stomach and around my GI tract and tumor markers high.
I am so sorry to read that for some of you Faslodex is failing. I know it doesn't last forever including me. MaryAnne
0 -
I got some good news a few days ago. After being on Faslodex for 6 months, I had new CAT scans on Wednesday, which show that I'm stable! Very happy to hear that. I'd had a bit of progression while on Xeloda briefly before Faslodex, so it's nice to know that the progression has been halted...... for now, which I'll take however long it lasts!!
My CA27.29 tumor maker was 96.2 when I started this drug 6 months ago, and it's dropped to 43.6, which I happy to know, as well.
I guess I'll continue to be a pin cushion for the foreseeable future!!
0 -
Good news, Queen. Bottoms up!
Your fellow pincushion,
Tina
0 -
WTG Queen! Good to hear. Hope it works for me also! I'm the new pincushion!Cathy
0 -
Thanks! I hope you have success, too, Cathy. I hope that for all of us! Now.... if only there was a different way to administer the drug!
0 -
Hi All,
Going for my 1st loading shots of Faslodex later this morning. I have only been on anastrazole for 9 months and had been feeling so good lately, I wasn't a bit worried about this last PET scan. So seeing "slight progression" on my report was rather devastating. Had been successfully floating down the river lately but this brings me back to the shock I felt when originally dx'd. I am fortunate to have "only" bone mets, but plenty of 'em! Now a couple more.
Okay, enough whining already. Really just wanted to say thanks for the thread and the tips on page 1. (Swilling water as I type this!) The nurse who will be giving me the shots admitted she has not had anyone on Faslodex for quite a while, so I am very grateful for the expertise here.
Jo
0 -
hi! Awhile back I asked if anyone has been short of breath while on faslodex. No responses so far- does this mean I'm the only one with this SE? It is listed as a not so common SE of both faslodex and xgeva.
All my heart/lung testing came back normal except for shortness of breath on the stress test. I would appreciate anyone sharing.
Also I too experience "faslodex brain fog " off and on.
Thanks!
0 -
Hi Shantilynn, I've been hanging out on this thread for two years now. Yours is the first I've heard of shortness of breath. HOWEVER, just because it isn't a common SE of this drug, doesn't mean it's not affecting you.
0 -
Shantilynn, I have the fog and shortness of breath also and am on Faslodex and Xgeva. Am having testing this week for the shortness of breath (possible blood clots).
Make sure you tell your onco if it gets worse, or causes any chest pain.
0 -
Hi All-
Jo, how did it go?
I'm going to be starting Faslodex soon. I had been on Femara and then Aromasin but now a progression leads to Faslodex. I also get Lupron shots and Xgeva.
The memory issue is very concerning to me because that would severely effect my job where sometimes I am not permitted to write down information that I learn and it seems that this is a very common side effect. I think it will be something I ask the MO about but I was happy to learn about that on this thread.
Renee
0 -
Hi Renee,
So sorry to hear you had progression too. I saw your earlier posts when your were waiting for your results and was really hoping you wouldn't hear the p word.
After my first shots, my butt muscles felt sore for about 3 days. Noticable, but not terribly painful. So far my se's are about the same as when I started Arimidex. Hot flashes, a little nausea at times, and trouble sleeping. Also seem to be having more pain than before, but have been enjoying working outside and probably overdoing it a bit.
I haven't noticed any memory issues so far, but have only had the first loading dose.
Keep in touch. Hopefully we can hang on this thread together for a long time!
Jo
0 -
Shantylynn, So sorry that you are having med related shortness of breath and fatigue. I was started on Xgeva IV every 4 weeks and within 5 doses had pronounced fatigue ....fuzziness, shortness of breath. My med team admitted me for a work up. First noted on labs was that I was having serious adrenal insufficiency...cortisol levels very low.. So Xgeva discontinued and cortisol levels supported. That was a few weeks ago. My issue and still is..."why did it take a few months" to put it all together"? An endocrinologist put it all together...whew! I sincerely hope that our oncologists give a strong look at the reported strong sx associated with Xgeva txs. Hope that this helps. Peggy
0 -
Hi Ladies.. Hope you all had a nice Mothers Day.. I sure did. I think my kids wonder how many more we have. Living with mets to both lungs, liver, bones - both hips and spine changes the way you look at things. Treasure every day. Hoping this Faslodex works for me but if it doesn't then chemo again. The way I look at it is better to lose my hair again than my life! Also yes I have severe fatigue now .. worse since Faslodex. Tired and need rest are my middle names! Also major brain FOG!Cathy
0 -
Well...Just like everyone else...I read every post ...but then when it's time to respond...My chemo brain doesn't allow me to remember all your names...but just remember I respect and love all of you and your comments are inspirational...
I have been off treatment for 3 weeks since my last great news I posted a ways back...Liesions have dispated on my liver...tm down from 436 to 200 and blood cts pretty normal...
So I go Thursday to start Havalon again..along with Felex....and my bone booster...I have to say I have enjoyed being NORMAL>>>> ha what ever that is...but in this disease...that's what I call it...I have been able to finish my landscaping and be around my grandboys alot more...
Mother's day was beautiful..spending it with my extended family and my daughter...
I have a bigger surprise happening today..that my daughter doesn't know yet my I am flying in her Dad for 2 weeks ...This is a long story...but something that we both need...We have been very good friends since we split 1998...And have become closer this last couple years just via phone...anyhow...she has NO idea he's coming today...so we are surprising her at work...around 1pm Idaho time...I love doing surprises..especially for my kids...
So Update later...Love you all Carla
0 -
Carla - Awesome news about the regression and your feeling well enough to do things. What a great surprise for your daughter. I can tell your a great mom.
Cathy
0 -
Well. I will be going for my 18th injection in a week or so. I have been reading these posts and one thing I have in common is the foggy brain that I thought was coming from the chemo of 2009. Hello? However, in addition to the brain farts, I have been having a time of my life with lower back pain/non-radiating. I did have some cancer in the bone back there found before I started these Faslodex injections and had radiation. The pain is horrible when I lay still - like in bed overnight. Any thoughts?
0 -
Darn, talk about losing things...I keep losing my BC journal, so I can't remember how long I have been on Faslodex....at least 4 years....maybe Tina and I are in a race!!!
I am a 13+ year survivor of Stage 4 bc, and I really haven't noticed an increase in forgetfulness. And I have been on a lot of chemos and treatments!!!
I am currently into my second remission, after Kadcyla kicked the butt of the lymph nodes behind my sternum and in my supraclavicular area.
I remain on Faslodex and Herceptin, and am praying that my PET scan in July shows continued remission.
0 -
Wow Denny, I'd like to be you when I grow up!
I notice issues with focus and remembering names. I think it's due to the ooph and the extreme lack of estrogen in my body. Glad the meds don't affect you this way.
0 -
We can't blame chemo for all of our problems, but I usually do. When I am with a group of ladies who don't have BC, I hear a lot of the same complaints.
I am amazed that I have any Estrogen left with all of my treatments, but I guess it will continue to be made within my body....to further complicate my life!
0 -
Hey Jo-Thanks for the info. I am going for my first injection tomorrow. My husband is going to come with me. I'm nervous. I don't deal with change well.
0 -
Wow Denny .. nice to hear 13 years! I just got one year but cancer has spread from breast to lungs, then liver and now bones. Faslodex does give me a foggy brain also. Often hear this side effect.Good luck everyone.. may Faslodex do the job for us all!
Cathy
0 -
Renee, Hope your 1st round goes okay for you. I'm glad your hubs is going with you, the injections are not the worst thing but not all that much fun either, so moral support is good!
Had my 2nd loading dose Wednesday.
Update on the se's, hot flashes seem to be much less for me than on anastrazole, but nausea has definitely been worse. They tell me it will subside after my body gets used to it. In the meantime, I got a new rx for a nausea med, prochlorperazine. Only tried it once so far and it put me right to sleep!
One other se that does not seem to be mentioned often is vaginal bleeding. I had a little of this for a few days and was VERY glad the nurse had mentioned it or I would have really freaked out. (I'm 58)
Hoping to be helpful, sorry if this is TMI.
Change is hard, but you can do this.
Hugs,
Jo
0 -
Denny, 13 years with MBC and 4 on Faslodex?! Wow! That is great to hear!
Tryin/Cathy, Are you new here too? How have your se's been so far?
0 -
Had my 6th round of shots this past Tuesday - only se that's annoying is sleepiness - seriously I get up in the a.m. - walk the dog and go back to bed for two hours - not like me at all - no brain fog which I had on all AIs and no depression - slightly nauseated the first 48 hours but honestly crackers work!!! Hope this tx lasts for a long time - oh yeah, almost forgot - have had three nurses and one of the three hurts like hell - the other two awesome - asked if I could "request a nurse" told it "isn't protocol" - oh really - it's going to be!!!!!
0 -
Sandy - I also have found that it does depend on the nurse giving the shot. Also make sure it has been warmed out of fridge for at least half hour. Last time I picked mine up from pharmacy she gave it to me out of fridge!!! I asked her about it and she said she had it out then put it back in ( I was held up by getting an xray first). So I put it under my shirt against belly for 20 mins before I'd let them inject me.Cathy
0 -
Cathy-good luck and I am sorry to hear of the spread. Sure hope the Faslodex works!!
OOPS-I lied Jobur....looked through my calendars since I still can't find my BC journal. My recurrence was 4 years ago, and I have only been on Faslodex for 3 years. So Tina has me beat!!!
I don't get nausea from the Faslodex, and never heard of the vaginal bleeding! Ugh
0
