Faslodex Girls

EvaPerone

I'm with Tina, my markers have never moved even with liver and lung mets.  But I am having loads of joint pain and now swelling in arches. Anyone else have this lovely side effect - if it's a side effect. Maybe it's unrelated, but physical therapists say it's not standard plantar fascitis. And mobility has become a huge issue. 

SPAMgirl

I gained a ton of weight, 50#, between chemo pause and steroids. I've always maintained a weight between 120-125, so this has been pretty hard on me. Lots of people have said the only way they've lost weight is through Weight Watchers. I joined the on-line group and lost 10#, bit I've plautoued. I can't say I've given up my good, yummy food, but I pick the one that will add the least amount of weight. The other thing I've done is started to snack on plain popcorn at night. I just put the kernels straight into a brown, paper, sack lunch bag. It will pop without any oils. Orville makes a low-cal spray and flavored salts to put on it if you can't stand the plain.



Since I have a tumor/fracture in my sacrum, I haven't really figured out what kind of excersice I should do. I remembered that I have a recumbent (coat rack) bike in the basement. I did about 20 minutes and ended up with an icky cold. I'll try to get back on it when I feel better. I've also been bad about tracking my food.

SyrMom

Eva & Trish, no, such side effect in arches ... however, I do have joint pain, as I did with femara.  I also have occasional hot flashes (got through menopause without 1 hot flash, now making up for it) and night sweats.  As far as markers go, I was hoping for a great improvement, but hasn't happened; however, the CTC has remained at zero after 2 months of starting on it (July).  Whether or not that's significant, who knows.  I agree, it's a crap shoot, unfortunately. Get scanned next month.

Aerial

Nope--no arch problems or hair problems for me.  I'm just happy the Faslodex & Zometa has been working for over 18 months.  Still, there is that "crap shoot" factor....so, I'm also trying to enjoy the good moments. 

DJ64

Has anyone used Faslodex twice and failed again?

My first time using Faslodex was in 2008 when it was one shot at 250 mg.  That was my 3rd recurrence and this time it was in both lungs, pleura with a pleura effusion.  The thoracic surgeon who did my VATS stated my lungs and pleura were studded with tumors.

I progressed on Faslodex, 7 months later and went on to Femara for 2 years until progression.  Took a drug break using my own estrogen and in 7 months, there was enough progression to try rebooting Femara.  It failed to work so I went on Faslodex last March, now at 500 mg 2 shots.  My first ct scan showed stable and the next ct scan 3 months later was stable with some regression.

About 5 weeks ago, my dry cough was back, shortness of breath and wheezing.  I asked for a ct scan and it showed progression in size and numbers in my left lung.  The rest remains stable.

I want to continue to use Faslodex but with another hormonal.

I have used Tamoxifen, Arimidex, Faslodex 250 mg, Femara, Drug break, Faslodex 500 mg and it seems only Aromasin is left.  I think it is to close to Femara and might fail.  Should I try Afinitor with Faslodex?  Do any of you lovely people have an opinion.  Sure would appreciate it.

Thank you in advance,

DJ

susan_02143

I haven't.... this is my first rodeo. Femara and armidex are close; aromasin is in a different category. There is a recent study which shows some good results with aromasin and faslodex together. Hope this works for you.

*susan*

Tree3

Well I was diagnosed with stage 4 last aug to bones and lung and have been on faslodex and Aromasin with very good results so far. No problem with my lungs since August when I was first diagnosed., I've been told the two working together are like miracle drugs for some of us and I'm believing it

Lynne

I just had my 3rd scan since starting Faslodex in June. Again, it shows all tumors shrinking and no new tumors. Only issue I am having is the joint and back pain from the arthritis it is causing. I went to my Primary on Fri, and she started me on Cymbalta 30mg. It's an anti-depressant, but also works on pain. I have the pain meds (Vicodin and Tramadol), but they make me loopy, and with me still working and driving, I only take them at night. I've been doing just three ibuprofen, every 4 hrs, during the day, and it's not helping much at all. I also am still getting hot flashes even on 3 Gabapentins a day. We might move that up to 4, if the Cymbalta doesn't help.

I just had my shots and Zometa IV Friday too. She went to close to one of my hips again, and it hurts a lot in that hip and when I walk on that leg. Huge bruises on both sides. I sleep on my sides, needless to say, I didn't sleep well last night. I couldn't sleep on the right side at all. Since it's Sunday, I think I'll take the Vicodin during the day today. : )

I'm just happy that this treatment is working. There are a lot of worse side effects I know I could be having.

Thanks for listening to me whine a little! : )

SyrMom

Wow, congratulations to all of you!

DJ64

There is no one that any of you know that has used Faslodex twice?  I was hoping there might be as this post is on Faslodex Girls is so long.

Wishing you all the best on this drug.  If I count both times, I have used Faslodex for 18 months.

DJ

susan_02143

DJ,

Reading back is hard since some of the women who posted the most helpful posts are no longer with us. I have been on this thread since May 2010 and can't recall anyone trying Faslodex for a second time. But, my memory of those first 6 months is pretty sketchy as you can probably understand.

Hope the second time works for you.

*susan*

susan_02143

Lynne,

Wonderful that the Faslodex is working so well for you, but sorry to hear that it is aggravating your joints. Turns out that what I thought were my hot flashes are actually symptoms of another disease, so can't help you there. My doctors are now claiming that I haven't had a hot flash in several years, but then again, they don't live in my body! We still have no heat on in the bedroom since I can warm it up quickly! :-)

*susan*

Tree3

I have to ask this question as I hope I'm not alone with this situation, but has anyone else noticed or experienced an increase in sexual desire since being placed on these estrogen related drugs? I'm on both Aromasin and faslodex and I'm kind of feeling like a teenage boy. I suppose its good news but.....is it one of the unspoken side effects? To be honest I've been too embarrassed to approach my onc about this subject but I guess I'll have to. I mean not that it's bad but it is weird in a good way. Or whatever.

Tree3

Phew, I don't care if anyone answers but I feel very relieved that I've placed that question out there.

Teresa

Tina2

Tree, glad for you! I'm afraid I've gone in the opposite direction.

Tina

Tree3

Well, Tina, perhaps I should enjoy it while I can and quit worrying about the weirdness. I do wonder if it is a side effect, though, at least for some people.

DJ64

For susan_02143…

Faslodex failed the 2nd time around.  I did have 11 months on it.  I was just wondering if someone did use it a second time around what they went to next.

Thanks anyways,

DJ

Anne45

Tree I have not had that side effect!  Enjoy it!  Finally hearing something good and maybe if I am lucky it will happen for me!

blainejennifer

Tree,

I had that SE while on Tamoxifen, and the MO explained that any estrogen suppression can let the body's testosterone have more effect, leading to teen-age boy syndrome. One of the few SEs my spouse looked forward to.

Jennifer

scuttlers

Jennifer, now that is a SE I could look forward to! I guess my last surgery path showed switch to E+, starting on one of the "inhibitors" this week. Just what I needed, another pill to take. But if it "kicks my libido", I will be one happy girl!

Tree3

Well, I know that this sounds strange to say, but I'm happy to know I'm not alone in this testosterone turn on side effect. Wishing all of you a similar side effect because there's got to be something good with all of this. And the other thing is I'm experiencing minimal pain from the meds or the shot. So far so good and its been six months. We all know that any of this can turn on us in a moment's time. The drs all remark at how wonderful my attitude is. It's almost laughable if it wasn't so serious.

Annettea

Does anyone know of a good multi-vitamin to take that won't brother your stomach?After chemo three years ago it really messed up my stomach have to take Zantac every day. Use to like to eat hot spicey foods can't do that anymore.

Annettea

Does anyone know of a good multi-vitamin to take that won't brother your stomach?After chemo three years ago it really messed up my stomach have to take Zantac every day. Use to like to eat hot spicey foods can't do that anymore.

bourscheid

Annetta, I have stomach issues, too, and I take the One A Day Gummy vitamins.  Doesn't bother my stomach like swallowing a pill does.

Annettea

Thanks. Going grocery shopping today will try the One a Day Gummy. I also don't like swallowing pills sometimes they feel like they get stuck in my throat. My husband said I don't drink enough water when I take a pill. I tell him I have a small throat and I do drink enough water. Some vitimins are so large I call them horse pills.

bourscheid

I know some people on here coat pills with pudding or yogurt or anything like that that is slippery.  I find I have to fill my mouth with water first then put the pill in my mouth and swallow like that otherwise it just sticks to the back of my throat.

lwd

Tree,

Good for you!  I'm happy to know there's a GOOD SE!  I haven't noticed any SE's at all on Faslodex, after almost 4 months.  The injections really don't bother me much.  The nurse gives them up pretty high, which seems to help me. My TM's have risen a little the past 2 months, but we are going to give it more time.  My onc said sometimes Faslodex takes longer to work.

I haven't heard of trying Faslodex a second time, but I know sometimes they revisit the other AI's after trying something different.  I'm willing to try almost anything before chemo, although I'm very hesitant about Halotestin, an anabolic steroid, which my onc has mentioned.  A complete break from treatment, or a flood of synthetic estrogen - those I might be willing to try.

After those, my onc has Afinitor/Aromasin on my list.  Making that decision will be huge for me.  I already have pleural effusion in the left lung.  I'm very hesitant.  Plus, stubborn, and my onc knows it.  Nevertheless, we have a great relationship.

I know I'm less willing to accept chemo as treatment than most, and I certainly don't criticize those who do.  We are all different.  But, I've been looking for info on survival rates and palliative care comparing no treatment versus chemo treatment for stage IV.  It seems a large percentage will go on to chemo.  But, how long will the others survive?  And are their last months/years generally more or less difficult?  For me, QOL is more important than more time.  If anyone can lead me to research sites, I'd appreciate it.  I've done lots of searching, and I realize most of those who choose no treatment aren't tracked. 

I guess I got off track a little.  Wishing everyone good luck with Faslodex. 

Lane

Tree3

Lane, I'm taking both faslodex and Aromasin together as a treatment plan. And it seems to be working. My cancer was discovered when I ended up in er with a collapsed lung filled with fluids. That was six months ago, and my lungs, thank god, have been fine ever since. However, my panic attacks are returning. I'm blaming it on cabin fever, hunger while shopping, lack of fluids, lack of exercise. If it persists I will talk about it with my onc.

Jill49

Tish - I've been on Xeloda for almost 3 years. I took a break after one year and went on Tamoxifen and then Aromasin.  When both failed, I returned to Xeloda with success.

I may have to switch soon, but am grateful for the long stability it has given me.

Wishing you all the best.

lwd

Tree,

I'll ask my onc about combining Faslodex with Aromasin (which we've never tried).  It's good to hear that some of these drugs can be combined, and also revisited after a break.

After 3 years NED with Femara, my pleural effusion returned.  Over the past 3 months I've had 6 Thoracenteses to remove fluid.  Two weeks ago I had an indwelling catheter inserted so we can drain the fluid at home.  We're hoping the Faslodex begins working and will stop the fluid from accumulating.  We're draining about 500 ml every 2 days.  It comes back in a hurry.  Hoping that starts to decrease soon.  I'm having some nerve issues from inflammation and cancer cells in the pleura.  Now I'm taking Neurontin (Gabapentin)to calm the nerve issues through the pleura and up into my neck.  After a week, it seems to be helping. 

Wishing you all the best.

Lane