Faslodex Girls

EvaPerone - Congratulations! So glad to hear you are responding favorably to the treatment ... hope I hear the same thing in a couple of months.  Find it interesting your doctor has not had another pt. with positive results, though.  That's concerning.

Thank you, Susan; that's reassuring.  Time will tell ...

Susan & Syrmom: My Doc is at Johns Hopkins so doubt the numbers of us are low. He did mention that most women previously got only 250mg at a time, and we're all getting 500mg now. Research indicates this made a huge difference. 

I did talk to one woman that has been on Faslodex for 5.5 years! But she had mets surgically removed first. 

I'd like to be writing on this board in 5 years that I'm still on it and the amazing things I've done while stabilized. I am off to Istanbul, Montenegro, Croatia etc in 6 weeks. I booked my flight to depart directly after my next Dr's appointment. I figured this way I would either celebrate my good scan or have something fun to do before returning for next phase of treatment.  I needed a plan.

DJ64: I'm with you, I progressed on tamoxifen and femara too. Long may the big dose of Faslodex work. My next scan in Sept too. Let's keep in touch.

To all my faslodex sisters, I'm struggling to live in the 3 month window between scans. Open to all feedback.  

Good afternoon to all, and thanks for being a big support for me even while I have just been reading your stories for the past few months. 

I'm now a member of your infamous company on this faslodex journey. I was diagnosed with stage 2b and had a MX in August 2009, followed by a round of chemo (to which I was apparently allergic), and trials of femara (froze up all my joints) and tamoxifen (thought it was temporarily successful) until beginning of this year when my excruciating back pain turned out to be stage 4 mets to spine, ribs and liver. I've now been on faslodex since mid-Feb. (including 2 loading doses) and zometa. The good news is that my first scans after 2 months showed no liver tumor progression (after it had apparently been growing speedily), so that is great news. I have 2nd set of bone and liver scans later this week, so am trying to visualize more positive results. It has been helpful to read that others have been on faslodex for some time, and it seems to be making a difference. Reading your stories is helping me to shift my perception of stage 4 from shorter term = terminal, to possibly somewhat longer term = chronic.

I heard there's a new study out combining flasodex and arimedex, with good results.  Has anyone seen this or know where to find it?

SyrMom, there's one study posted from 2011 but nothing heard recently. Please post if you find it. Thanks, Eva

Robin,

I have had some spikes but of about 20%; not 100%. And then they would fall. I track my numbers, and the spikes are always during the Spring. When I first started treatment, back at Stage II, my numbers doubled after my first chemo. By the end of the third cycle, they had gone back down.

have no idea if this is helpful. I can only imagine how you are responding to this.

*susan* 

My ONC doesn't even want to run the markers for at least 2 mo after starting the faslodex as it takes time to kick in.  I've heard from women here sometimes 4-6 mo. 

puffins,

How very disappointing! I hope that the taxol is the magic bullet for you.

*susan* 

So sorry, puffins.  Good luck with your next treatment.

Anne45,

Thanks for your encouragement with the taxol! I'd tried a TAC (taxotere) round of chemo several years ago after my MX, and could not tolerate it. I told myself then that I'd never do more chemo...never say never, I guess! Hopefully the lower dosage of taxol alone will be more tolerable and still have good results!

Hugs and blessings for your healing journey!

Shoshanna 

I've been on Faslodex for a year now with good results. But these last couple of treatments have left my bum bruised and sore.  I couldn't believe the large purple spots- the size of an orange- on my rear where the injections went in.  Does anyone else have this problem?

 Two treatments ago, the injection site split open, bled, and then left an inch long slit that turned black, and finally fell off this week. The nurses were very concerned about it when they saw it the following month, and they had me check with my doc. They also said I shouldn't get the shot on that side anymore.  Now they give me both doses in the other side.  I was wondering if that's why I bruise so much now.

 Are there other sites that are recommended for Faslodex, besides the buttox muscles?

  How are you all doing with this.  As far as other side effects, I have none (except for tummy weight) and my markers are good, so I don't want to switch. On the other hand, I worry that at some point my rear end will just not take any more.

SyrMom,



I was diagnosed Stage IV with lung mets a year ago and have been on Faslodex ever since. I am happy to report to you that it has stablized the mets. So far, so good.



Tina