Faslodex Girls

By my count, I am off for treatment month no 38. Last week a nurse taking blood collapsed my vein, so not sure I will be able to have my blood work done, but I have fully hydrated just in case.

*susan*

Just when you think your monthly Faslodex injections are routine, you have a month like this. Intense pain and waves of nausea. Came home and made some soup. Hope that will settle everything down.

*susan*

I have been on faslodex for 4 months. What I noice with this drug it takes longer to kick in. Is it true or is it me??

Hi - I read every post on this thread, then just read last three pages since I posted.  Some experiences, questions and thoughts....  I tried to write it simple but I am a wreck, I feel like I cannot trust anyone, but I guess I was given good news yesterday.  I keep telling myself that my MO said the bc MO is a world-class specialist, I know now she only sees patients 12 hrs a week, the rest of her days are research and trials for bc.  So deep breath and trying to trust but I kind of spin a little in the telling.

Experiences -

Rx'd Arimidex / Fosladex complementary along w my own alternatives.  Been through 3 injections, now will be on 1x / mo.  I was examined by the bc specialist oncologist prior to tx beginning.  She is quick, worries me, I get conflicting info from her, saying she did not feel the node in R axilla (the large cancer one) last time, she felt it in L axilla where there was no cancer node, see what I mean, but perhaps there was a L swollen node ??? guessing.  Anyway, she could feel the large cancer node she said, the tender area. She said this time that last time she could feel things all over and this time nothing.  It is working, she said.  She is comfortable w recheck in 3 mo and PT not scheduled for perhaps 5 (last that showed mets was Jan).  This is within five weeks on Aridex and one month since first Folsadex injections.  I would wonder about this, but the general oncologist who referred me to he said that the loading doses would be working soon too, neither mentioned waiting for months for results. 

Lung mets - both MOs said no surgery, no biopsy, no chemo, to trust this combination.  I know I walked quickly into this huge center yesterday, felt fine and did not feel burning in lungs or tired like I did in January.  If all else is responding, then lungs too, we would hope.

Question - long bone pain.  Anyone.  Is it a deep groaning pain under muscle in middle of bone length (not center as in marrow)?  I experienced long bone pain in R thigh for 4 days, off and on, stopped.  Last week was in R lower arm bone, lasted 4 days off and on and kept me awake two nights.

I said to bc specialist MO I had it and why does it happen.  She said it is usually small joints, hands and feet.  I said, well, good to know, but why does it happen.  She did not answer that one.  At the general MO's office I asked his nurse, she said it happens and tends to fade, go away for good, but she did not know why either.  Or do they not say on purpose?  Is this because I do not want to know the answer, something irreversible?  Or is it bcz there could be cancer in bone, slight level, not what shows in SUV on PT?  And the cancer is dying off?  Or both?

Thoughts, I decided I have none.  Except maybe the ice is not necessary, but the warming of fluid is.  I carefully warm in my armpits.  I was told by IU Health CC to use heat afterward and to walk often, move around often.  I have done well on injections, really, no pain, no swelling or lumps.

I'm new to this site. I am currently on monthly Faslodex. I read that if you put weight on the side where the shot is being given that it lessens the pain. I tried it and it helped. I also have a lidocane cream applied 1/2 hour to an hour before getting the shots. that helps as well.



My experience with faslodex is that I feel great and healthy most of the time. I get headaches, have sore hips at night for about a week, I have hot flashes sometimes, but I feel good most of the time. I eat a healthy diet. I exercise. I take a multiple vitamin regimen every day and I get up and move and get fresh air every day.



When I was diagnosed nine years ago I had stage III breast cancer. Now I have stage IV. I just hope this helps someone.



Faslodex does take a while to start working. But it is not the worst thing I have had in terms of treatment.

aggy-Does your onc take any tumor markers with your blood work each month when you get your injections?  Often the markers will show improvement before scans, but sometimes not.   I would think that your next scans will show something. Even if they just show stability, that's a good thing.  At three months, you might ask your doc for a scan.

I think it was 4 or 5 months before I had my first scan after starting Faslodex.  I'm happy to say it's been working for me for about 20 months, now.

I had a CT scan this past Tuesday but, have to wait until Monday to get the results.  Ugh.  I hate waiting but, I'm hopeful for continued improvement and stability.

Welcome to the thread bluebird!   This is just my opinion but, I think all of our experiences will be unique to each of us.  Because our cancer is unique to our own genetic makeup, there are no solid, strict answers to many of our questions.  Everyone responds a little differently to the drugs, chemo and/or hormonal treatments.  I think doctors are a bit embarassed to not have "definite" answers yet, that is the reality of cancer treatments as we know them, today.  Heck of a way to live, huh?  Although, I try to be thankful about the living, part.

Marymoir, every so often I notice more than a few strands on my hands when I wash my hair. I don't think this is happening each time, but it might be. My hair is a lot drier than before, but does not seem to be thinner than when I started on Faslodex in the summer of 2011.

Tina

Just came back from getting 1 shot in each cheek.

Officially a "Faslodex Girl"(for however long!)

I'm thinking the S/E's will be mild compared to the Afinitor.(whew!) (and I don't mean to minimize anyone's discomfort fro S/E's--I know it's different for all. I'm just hoping it's easier than Afinitor--knocking on wood.

Best to all!

Good news!  PET scan results are in...significant improvement in all areas!  Mostly just have a few small liver lesions left and they are significantly reduced with little uptake!  Woohoo!  Even better...I get to stop the Doxil and just continue with the Faslodex and Xgeva!  So excited!

Lori, I second that "yay!" Great news!

Tina

Hi Lori,

Jumping in--I'm new to this Faslodex board. Don't know you, but I'm happy to hear your good news!  

Wishing everyone, the best.

Holy Hotflashes, Faslowomen!

Mine, which had virtually disappeared for many months, are back with a vengance and increasing in occurence, strength and duration. My face flushes as well.

Anyone else experiencing this "out of the blue" after being on Faslodex for a while?

Maybe it's the arrival of warmer weather...? I know this is no big deal, but I'm curious.

Tina

Tish 13

I wasn't saying it spreads the cancer you misunderstood.  Let me make this clear it stops the spread of cancer but doesn't rid the area of the bone cancer.  I've been put on Xgeva, Cytoxan and Xeloda along with Faslodex but have been told by three different Oncologist that it hasn't changed my bone mets.  Actually my cancer markers tripled while on all of the above.   Haven't had another PET Scan but am scheduled for such in May.  Faslodex will help stop the cancer from spreading but Faslodex doesn't cure the cancer itself.  I've been told time and time again that I will never be cancer free but they are trying to slow or stop it from metastasizing faster.  I had lung surgery for two tumors in January but since then I now have three in lung and 2 in the Pleural, T1 through T11, right hip and femur.  I can't take Femara had horrible allergic reaction.  Cytoxan helps my bone pain and joint pain from Flaslodex.   My situation with bone pain is somewhat different because I have severe rheumatoid arthritis and have had over ten surgeries on joints and connective tissue, plus have had osteoporosis in the past.  Oncologists have given me Cytoxan for that reason to stop my joint and bone pain, this has worked in the past and is doing so again.  If I wasn't on Cytoxan they would have had to stop the Faslodex, because my joint pain in hands and wrist would not allow me to hold a glass.  I know how Faslodex will help the spread that is why I've advocated to increase the Cytoxan so that I can stay on Faslodex.   I guess every person reacts different to all these different medications, were not all the same when it comes to treatment and progression.

Hello can anyone tell me if they have had success with Faslodex after being heavily pretreated with chemo. Mom has already been on act for initial bc in 2006 and has been on taxol gemzar xeloda halevan and ixempra for stage iv liver mets. Thank you