Faslodex Girls

Hi everyone,

I'm having my second set of CT/Bone scans tomorrow morning (after being on Faslodex and Zometa since this past July). The first set showed the tumors in my lungs and lymph nodes had shrunk. There were 2 new spots on 2 of my vertabrae though. They weren't sure if they were there previously though and were too small to show on the bone scan. I kyphoplasties for those 2 vertabrae (T10 and T8, T9 had a compression fracture and was repaired in June, that's how they found the mets). Hopefully, these scans turn out ok. I'm leaving on vacation on Saturday to the Domincan Republic (it's currently 0 degrees here right now, need some warmth) and will get the results after I return. Wish me luck please!

Lynne

They are not using the word remission anymore. It's called NED, because it's still there, we just don't see it. I think most people misunderstand remission and that was the reason for changing it. That's just my guess. We do use the word regression for when our mets get smaller (Reggie). Stable her is often referred to as (stable boy!



I had a pain in my deep muscle on the back of my butt and I asked my MO to take an x-ray just in case it turned out to be bone mets. Three days later, I ended up in the hospital to disover I had mets to my liver and bone. They sent the reports to my MO. I week and a half later, my MO called and told me that my x-ray just showed arthritis. Needless to say, I was NOT impressed. If I every saw my MO, I would have changed by now.

Thanks for the tip about benedryl I will ask my onc about it next month. Had a shot yesterday is hurting a lot today. Has anyone having a lot of gas from the faslodex? Read some ladies having problems with bowel movements. I eat alot of fruit like apples and oranges. It seems to help also if you like Brussels sprouts. More filber the better.

Hi annetta, I have to admit that I do have bowel problems occasionally,but not a lot. Once in awhile I can't control them because I think I'm passing gas an oh oh , I have to clean myself up. Have been blaming it on the cancer, though, and nothing else. Perhaps it's the drugs I'm on, and perhaps I should discuss it with my onc. And my gas, OMG my gas is ridiculous, obnoxious, and uncontrollable. But my markers keep dropping every month so which is more important I ask myself. Is it worth talking about I ask you?

I had progression in November they put me in faslodex. I had 3 treatments and 4th injection is next week. I seen my onc. today and my circulating cell droped from 3 to 0 and my TM went from 964 to 620. I think this maybe my magic potion.

Hi, I am glad everyone in the immediate above posts is doing so well. Nice drop in the Tm numbers. Faslodex is working well for me too. It beats AI's and chemo by a million miles.

I have a question that is about getting a body wave while on faslodex. My hairdresser said not during treatment; it might not take, fall out etc. All I could think is that I will be on treatment forever.  I am going to Hawaii in March (gift from my Aunt) and would love get a  body wave. Any issues with that while on faslodex? It's hormone blocker so I would think it would be fine. Any one have any issues with hair besides having it thinner? 

I understand what your hairdresser is saying, as hair thinning/fall out is one side effect that some people experience.  Not everyone, and maybe not you.  I would think, in a month or two, you will know if you are going to have this problem.

 My hair started to fall a lot out after the first couple of months, but then it stopped. For ahwile, every time I showered, I'd have a gob of hair in my hands.  I don't know if it was the drugs, or the shock of finding out about Stage IV and then having all of the treatments, but I was sure I was going to have to wear a wig at some point. Then, one day it just stopped coming out, and now my hair is as thick as ever. It's been over 18 months for me on the drug.

   So if I were you, I'd wait a couple of months an if you don't notice any hair changes, go for it. 

Go for my 2nd set of shots on Tuesday.  At least this time I don't have to have Doxil and Xgeva along with it.  It will give me a chance to figure out what SE's are from Faslodex.  Feel better than I thought I would on this so far!

Annettea, I have been on Faslodex for about 18 months and have dyed my graying hair every eight weeks with no problems. I wash my hair daily and use good conditioner each time and moisturizing masks once or twice a week.

Tina

Hi everyone,

Has anyone put on weight since being on faskodex? I gained seven pounds since Nov. It all went to the the mid section. I Guess I should lay of the chips and ice cream and candy bars. I really get hungery in the evenings while watching TV. I need to start walking when the weather gets warm I live in Pennsylvania winter her sucks. I hate the cold.

Had my 2nd set of shots.  Used the tip for putting the weight on the opposite side from where the shot was going in.  Sooooo much better!  Battling thrush right now from the Doxil...ugh.  Hope the headaches don't start again. 

Went to tai chi before my injections today.  I am planning on getting a membership to the local pool/wellness center so I can start getting this sedentary body moving again.    Probably will do more swimming/water aerobics than using the gym.  

Hope everyone is well!

Good morning everyone ... no problems here with the hair, so far (thank goodness).  I've been on Faslodex since July.  I get my hair colored/cut every 4 weeks and highlighted depending on when it needs it.  My weight has been up and down, usually by 5#, can't say it's from the Faslodex.  I went through menopause years ago without 1 hot flash (had plenty of night sweats though); now, for the first time, I do get hot flashes.  They don't really bother me;  I figure (hope) it's the drug doing what it's suppose to do. 

Hi Denny

I guess I should watch what I eat. I think sometimes when I get depressed I figure what the hell eat what you want because maybe later on you might not be able to. I started to eat more because when I saw my onc I lost a couple pounds and he got concerned. I am petite person and weighed only 118, then on faslodex I went up to125. Being petite I do not want to put on any more. I am trying not to snack to much in the evenings. HOW about this weather in PA? Two days in the 60's now back down to bad wind and some snow. Can't wait for summer.

Stella,

I'd love to be able to give you some insight, but my markers have never meant beans!

Tina

I have been on Faslodex since Jul12. At this time the results of my CA27.29 test was 3435.

Dec12 tumor marker results went from 315 to Feb13s results being 361.

My doctor wants to just monitor.  I understand this isn't a large increase but still concerns me. Anyone have a similar situation. I have mets to liver and bones.

My next scans are Mar13.