Faslodex Girls

DawnV

Dx'd 1st time 10-2004, now it's back and I'm stage 4 with mets to stomach + possible kidney,colon,pancreas involvement. Getting Falsodex shots but don't know if they are working yet. Anyone else out there with Lobular mets to stomach?

Naniam

Dawn, I was ductal but surprisingly I had a number of peritoneal lesions (covering over internal organs) that is normally a lobular area for disease to spread.  I remember my path report said it had a "lobular component" but I don't know if that is something distinct or just part of a ductal diagnosis. 

I was told we won't know for 6 months if the Faslodex is working - scan then.

frankandfernsmom

Thanks for starting this thread up again.

I will be starting Faslodex on Wednesday the 14th so I will let you know how it goes.  Kind of worried now as I will be traveling out of the country on Friday.... I'll just hope for the best and carry tylenol with me!

Hoping to get a good run out of the Faslodex!

Aerial

Same here, frankandfernsmom!

I've had two treatments and my side effects have been mild aches.  (Naniam, sounds like we are on a very similar schedule.)

Here's hoping the best for all of us!

Cynthia1962

Naniam - My appetite disappeared while on Tamoxifen and hasn't come back. It's a constant battle to force myself to eat. It's possible that the Faslodex is causing it because it works similarly.

Naniam

Frankandferns mom, 

Here is something I found out this week for myself.  Some of the other ladies here when I first arrived, said to warm the Faslodex yourself.  The first time I didn't, and while the nurses warmed it, I got it lots warmer.  This time, I didn't have sore buttocks/hips for 12 days and it injected easier too.  Both times, two nurses injected at the same time.  Ask them to let you roll it between your hands and get it nice and warm - I did both together and I'm asking next time too. I drank more water with the Faslodex this time too - not sure it makes a difference with it, sure know it does with the Zometa. 

I got my first one on Monday and we left with daughter and family for Disney the following Monday morning.  I've just been real tired since I started them but then I am much older but I made it at Disney for 5 hours - thought that was pretty good.   

Aerial, have you had your first Zometa?  I get mine on the 19th - then January I'll start both at the same time. 

goldie123

 i've been on fslodex and xgeva sine my dx in may and i've found that if i warm ot in my hands it doesnt hurt going in and the hips dont hurt so much after.  my tms have been going up slightly the whol time but my pet scan 4 months age showed slight healing. i have to take a pet scan on monday since my onc said this month the tms went up a lot. i hope the faslodex can be continued because it is such an easy treatment

sandilee

I got the results from my CT and bone scan yesterday, and I'm stable!   There may even be a bit of improvement in some of the ribs. My tms went from 267 in June to 67 last week.  They're still kind of high sounding, but I like the direction their going!  I'm relieved, and hope the Faslodex/Xgeva combo can keep me stable for a long time.

Cynthia1962

Goldie - I hope you can continue the Faslodex also.  I agree that it's one of the easier treatments. 

Sandilee - congrats on a good scan.  My tm have gone down more than once since I've been on it.  I also hopes it works for me for awhile. 

My chemo nurse brings the shots to room temperature, but I don't think they warm them anymore than that.  I will let her know that it may help.  We're always discussing different possibilities for making it less painful for me.

Naniam

Sandilee, congrats on the good scans.  My oncologist doesn't do tumor markers but that sounds like quite a drop to me.

Goldie, hope all of us can continue and have good results on Faslodex.

Cynthia, when the Faslodex was delivered to my chemo cubicle, the lady ask if I wanted to warm them.    I was amazed in the difference from the first injection.  I hardly felt them going in. 

janicemarie3

I was so glad to find this tread.  I was dx with mets on january 7th 2010.  I was on armidex and had a compression fracture last week and was in the hospital for 4 days.  I just finished radiation last wednesday  and on Friday the oncologist started me on faslodex.  I found that the injection site was very painful.  It is slowly getting better.  I have also noticed that my appetite is pretty much gone.  Since all of this has happened I have lost 13lbs.  Not that I couldn't stand to lose a little weight but losing it that fast can't be good either.  Does your appetite eventually come back after awhile or will this be a new thing to look forward to. I hope that you all have a great week. 

frankandfernsmom

Just curious.... Is the shot similar to the Xgeva where the medication is very thick and stings going in?  If it is, then I can handle it.... If not, then....

 Hoping for the best!!!

Linda

janicemarie3

Yes this medication is very thick and it does sting going in.  Hoping for the best for you Linda.

Cynthia1962

Linda - Yes, it's very thick, but it doesn't sting for me going in as much as it causes my muscles to cramp, if that makes any sense.  Stinging for me would be like the Procrit and Neupogen injections.  Now those stung. 

Naniam

Just make sure that it is really good and warm - you  won't feel it as much going in, injection site won't be as sore.  That is the secret. 

I haven't had my regular appetite but haven't lost weight -

frankandfernsmom

Ok.  Thanks for all the helpful hints.  We'll see how Wednesday's injection goes

Chickadee

I'm about to do injection #4, I think. My husband has wonderfully warm hands, so he is the official warmer. I get the Xgeva shot as well. The last time was pretty much painless. I think I remember the first one stung a bit.



I don't know if the Faslodex affected my appetite because I've had much more interference with my appetite from prednisone. I'm down to half a 5mg tab and ready to get off it all together.



So far Faslodex has been pretty easy if you don't count the stinky urine. Scans are this week so we'll see if it's working.

janicemarie3

Oh  my goodness Chickadee that is so funny I was wondering about the stinky the stinky urine.  Lol  Hoping your scan results show it is working.

Naniam

Chickadee and Janice - I got a good chuckle out of that.  I totally agree.

3rings

Faslodex isn't working for me either, progression to liver and brain, so disappointed so many had done so well with this drug.  Moving on to some kind of radiation for brain mets, when that's done Abraxane chemo for me.

LivingIt

Im one of those wacky chicks using both hormonal and chemo at the same time. Faslodex and Gemzar is the Mix de jour. Believe it or not it seems to have me in a bit of regression. Im loving it. My onc kind of ran out of choices and I wanted to keep trying, so this is it for now. Not a bad combo. Ive never had any big SEs from Fas, but the chemo makes me sleep for a couple or few days after I take it. 

Zoh 

Naniam

Since I learned that I now have mets, the one thing that has surprised me the most is coming to this forum and seeing so many hormone positive women with metastatic disease and many were node negative.  I always look at the node involvement in the original diagnosis in    everyone's profile.   With the AI's of recent years, I had expected less. 

3rings, I wish too the Faslodex would have given you better results.  It just doesn't make sense - cancer is one tricky sun of a gun. 

Zoh, that is quite a combination.  Lets hope it continues to work for a long time.  

Aerial

HI, naniam--Yep, I've had the Faslodex and Zometa at the same time (two weeks ago).  The Zometa didn't bother me at all until 12 hours later when I got the chills, fever and body aches side effect.  I had no appetite for 24 hours then I ate bland foods for the next 24.  After that, I was back to my usual  food cravings.  I really go for comfort foods and sweets.  I would like to lose some weight but, I've stayed about the same, so far.

On 12-29, I'll get another treatment of both the Zometa and Faslodex.  The nurse who gave the shots  grabbed a handful of my ample butt flesh and inserted the needle.  I felt a small sting and then, on the second one, I felt nothing.  Not a bad experience, considering needles are involved.

I'm going to ask for the warmed up injection, next time.

I told my nurse about the stinky urine and she said she's never heard of that before.  Humm? 

I'm praying that these two meds will keep me stable for a long time.

Welcome, janicemarie!

Naniam

Aerial, I think the reason the injection site bothered me so much the first time was they gave them high- just below my waistline.  The last time, the med was much warmer but one gave me the med in more of the ample buttock I have and not one bit of injection site pain; the other side was done by the same nurse  as the first time and she gave it high and that injection site was a bit sore for a couple of days.  Where they inject and how warm the med - DOES make a difference. 

First Zometa now one week away ! 

Frapp

If you haven't seen this tip on the zometa, it worth repeating. Make sure they set the drip for at least 30 min and hydrate hydrate hydrate. I have them empty the saline solution into me and have not had one problem. The first time I didn't do any if this and was hit with chIlls and terrible aches 3 days after.

3rings

One thing about Zometa is that it gets easier as time goes on, I guess your body just adjust to it or something.  I have been taking it for 2 years now and don't have any reaction at all any more, but the first few times, i had joint pain and fatigue. I have had great luck with Zometa, had kept all my bone mets a bay until this last scan.

Naniam

When I got the Faslodex a week ago, I ask questions about the length of time - they told me they do it in 15minutes - some women want 30 and say it makes a difference

Frapp, not having had Zometa, what do you mean when you say you have them empty the saline solution into you?  Do they run the med and a bag of saline together? 

3rings, I have heard the first time is the hardest, 2nd and 3rd a bit of a problem and then it is fine.  I'm counting on that. 

I have always been a go-go type person, at 66 I definitely feel the fatigue from Faslodex.  I hope my body can adjust to the med and the fatigue won't be as much.

Thanks for the tips.  Heard so much about Zometa I just want the first one done and over at this point. 

Frapp

Naniam,  Yes, that's how they do it at my oncs office.  My onc told me they do it in 15mins and I ask them every time to run it over 30.  I use the time to read and find it quite relaxing.  Then I take another 15-20 mins to finish off the saline.  They are just going to throw it out anyway.  By the time I'm unhooked, I have to run to the bathroom, but I have not had a reaction doing it this way and I'm not a big drinker of fluids.  I sometimes find I've gone a whole day at the office and all I had was a cup of coffee..  You may still have a slight reaction for the first time, but just know that you won't have it again.  And really, it's not all that bad.  You just feel like you might be coming down with something but then you don't.  So don't scare yourself silly.

Naniam

Frapp, thanks for taking the time to talk to me and give me suggestions.  It just gets to the point you want to get the drug and get whatever symtoms behind you. 

Monday I have labs then see the oncologist. I hate going to the chemo pod at 4-4:30 to get meds; it has been a long day for the chemo nurses and they are ready to go home.  They tend to push the meds a bit.    

justjudie

sorry to hear of progression Jeanne. Its always hard to hear when something is not working. Hope whatever new treatment they give you will work great. Gentle hugs your way.



Judie