Faslodex Girls

Cynthia, I was to get my next Faslodex on Monday also but they are closed for Dr. King's holiday so I wait a week.

When I was on chemo before, Merle Norman had something they recommended for eyebrows.  I really liked it.  Might want to check there.  I'm loosing hair but not bad, eyebrows are holding.  I take Biotin.  I'm wondering about coloring my hair now - it is definitely dryer. 

Cynthia, I looked it up in a couple of places, and apparently hair loss is a side effect of Faslodex, but it's a pretty small percentage of users that report it.  I agree with Naniam that biotin would be a good thing to try.  When my hair starts shedding from a PTSD flare, I take 5000 mg of biotin per day for a while, and I do think it helps eventually (not overnight).  I also eat raw oysters about once a month (at a safe and reputable oyster bar!) for a big whammy infusion of good old bioavailable zinc... also good for the white cell counts, from what I've heard.

Have you tried coconut oil?  Put a pea-sized dab in your palms, rub it around till it's warm and melty, and then lightly scrunch your hands through the ends of your hair.  It might leave your hair feeling a little greasy at first, but it will soak in pretty quickly.  I also eat a spoonful of it every day to get some good fats in my system. 

Hi Nancyh, welcome to the club!! I will go for my 3rd round of Faslodex and Xgena tomorrow. I'm more fatigued, also keep a bad taste in my mouth. I'm constantly using mouthwash and mints to try and get rid of it. I've had some pain but not bad enough to even take a tylenol. Sure hope this stuff works for all of us.

Hi Naniam - I know what you mean about the "normal standard" thing. My scans will be three weeks after my 4th injection with a follow up appointment a week later along with a 5th shot, I have read about others who started with injections every two weeks. I hate that week of waiting to hear the results! I started with Femara in September 2010, had left mastectomy in June 2011, and scans in November showed slight progression in my lung mets. Other than the problems I had with my primary tumor (bleeding, etc) I have been pretty well. Everyone says I look great! I keep waiting for the axe to fall. Who really knows???

Joanie

Cynthia, breathe dear...praying for you here, my friend.

My oncologist doesn't do tumor markers and I have no idea what CA is - is that part of the tumor markers?

So the only way we will have to measure is scans.

Luke and Jesses Mom - I have lots of fatigue and bone pain.  I did ask for something for the fatigue.  I think with the pain and fatigue it is easy to get depressed.  Ritalin, a low dose, is something that helps with fatigue.  Do talk to your oncologist and there are oncologist that give this to help with the fatigue. 

Golly -- it's troubling to read this thread today. Cynthia, lukejessesmom and now PJB with markers rising after 5-7 months on Faslodex.  

First and foremost, I want to say to all three of you (and any others in those shoes):  Please hang in there.  You're all on my heart and I'm praying for you this morning.

I hope this doesn't come off as terribly insensitive -- I don't want to sound like I'm just navel-gazing in response to this run of worrisome news here -- but having had only one injection of this stuff so far, what I'd really like to know right now is if there are women out there who have had a long run on Faslodex.

Anybody?

lulubee - thank you so much for replying to my thread earlier and for your obvious caring and concern.  It is disheartening that so many women seem to be continuing to progress after a short time of Faslodex.  I do know, however, that there are women who got years out it and they're on BCO somewhere.  I sure was hoping that I would be one of those women, but I believe that my onc considers 7 months a good run for an anti-hormonal. 

I'm am definitely feeling the side effects today of the Faslodex.  I ache in different locations and I had sharp pains zapping me in my elbow this morning.  That's a new one.  I took ibuprofen and benedryl, then later when those weren't enough, I took a 1/4 of Darvocet (don't want to waste it since it's hard to get now).  lol 

It's been an emotional 24 hrs., but I'm hoping to find my "denial" bubble again soon so I can march on with less tears.

lukejessesmom & PJB - sorry to hear you're in the same boat.  I hope we all find good alternatives to use instead.  PJB - have you used Megace yet?  That's the next one for me.

To be honest, having this thread plus the hormonal thread is way too much work for me! I am now 21 months NED with Faslodex. My markers came down a full 13 points last month. They haven't been this low since August 2009.

So, there is plenty of hope that Faslodex can give you a long run.

*susan* 

lulubee, I am just ending my run on faslodex and I was on it a little bit over 5 years, so it can work for a long time.  The down side is it can take a long time to kick in also.

Just be sure you guys are at the new dosing (which is 2 shots now, can't remember the mg) but it can be a very easy doable solution.  In fact it spoiled me and almost made me forget I had cancer...   

I am on blood thinners but don't normally have more than a drop or two of blood on my bandaids when I remove them.  The exception is a couple times my left hip squirted out like a gusher spewing blood everywhere!  The first time was funny because my nurse and I were joking around and then the blood flew and we both laughed so hard.  Well she gave me the shot in the restroom in the chemo area and the noise from that room echoed and everyone was staring at us as we left.  So I looked at my nurse and said "Amy, was it good for you?  Because it was great for me!  By the way, sorry about the mess I made on you!" LOL LOL  people that knew me lost it and the others just didn't know what to say.  I try hard to have fun in that nasty chemo room hehehe 

My shot about 2 months ago was the first one to every cause any real issue, the onc thinks the nurse might have hit a blood vessel because I have this lump at the injection side and a wound the size of a dime still trying to heal up.  It is so weird, the nurses said they have never seen this happen before but I say leave it to me to be different!

Good luck with the scans ladies, I really hope this works for you all since it can be so easy to do.

Well I did find out at my dr. visit this afternoon that I was running a fever of 100.2. Had no idea since I stay hot all of the time anyway. Hoping that my feeling so bad may be coming from a virus and not just from the Faslodex. I was given an antiobiotic so I guess I will see what's going on when I see dr. on Tuesday and hopefully continue with the Faslodex. Hope my whining did not scare any of you who are just starting on this treatment.

STABLE! What an awesome word in every way. So despite rise in tumor markers over the 5 months I've had Faslodex shots (from 42 to 166 - down from my all-time high of 997 last year), my liver and bones have stayed the same. I'm going with maybe even a little better, since my diffuse liver mets are so hard to read and we know SOME of the tissue is dead tissue, but not how much. 

I hope I can ride this train for years... Big hugs to all of you who've helped me get through this.  Paula

Paula, I teared up, honestly, when I saw your post.  I know you were so worried and I could not have been happier when I saw your good report.   Glad you can still hang with this thread for a very long time.

Hugs,  Brenda 

Thanks, girls. I feel like I got a four-month get-out-of-jail-free card! For "normal' people, that doesn't seem like long. To me, it seems like a loooooong time. Praying we all get a long time break, on Faslodex or whatever's next. 

Paula - SO HAPPY for you!!  Just awesome, I really hope Faslodex gives you a nice long ride.  Did you find out about adding Everolimus?