Hello

DragonGirl · August 2007

Hello Ladies...

Just introducing myself. Finally I've found a discussion board (group, chat room, whatever) for lesbians with BC! I was diagnosed with stage IV BC two years ago and this is the first one I've come across. I admit, after a while, I gave up looking. I just happened on this with a mis-click of the mouse.

Anyway...Is there anyone out there with stage IV disease? I'm 42 years old with mets to the spine, but have been remission for almost a year. It sure would be good to hear from another lesbian my age that has shared some of my experiences!

Snooch1

topo · August 2007

Hi,
I was diagnosed with mets in June to pleura and liver. Original diagnoses in fall 2006. Am now doing chemo, avistin and abraxane. Also taking tamoxifen. I, too, was glad to find a lesbian discussion board. Actually, I read a lot of the other posts, too. Helps me feel better.
Topo

NoH8 · August 2007

Snooch, glad you found us but sorry you had to. I too was glad to have a place to come to discuss issues that are unique to lesbians. I'm so glad you're in remission.
Glad to meet you too, topo!

jasmine · August 2007

Snooch, there is a lady in chat who is a stage 4. Her screen name is PatriciaBaker and she is a sweetie. I don't think she posts on the boards much but she pops into the chatroom during the day.

lv2cmp · August 2007

Snooch-Stage 4 here with mets to liver (in remission)& bone. I was diagnosed originally in 04 and mets in 06. Welcome to the board,,its a great place to be where people really understand. Feel free to pm me anytime. any questions,,ask away.

Amy

DragonGirl · August 2007

to all of you for such a warm welcome! It's nice to be here!

Snooch

wjc · August 2007

Hi Snooch1,

I am stage IV also, diagnosed March of 06. Originally mets to bone marrow, now with additional mets to spine, lungs and mediastinal lymph nodes. I have ILC , ER+, PR+, Her2 neg.
Support is so very important for those of us in stage IV. Our issues are much different than those in Stage I-II. I have a wonderful support group of women with only stage IV cancers, it is so nice to talk frankly with those who have the same issues.
I actually think of myself as truly blessed to have a partner who is a woman and is willing to walk this journey with me and not stick her head in the sand in denial as so many husbands of members of my group have.
Thanks for starting this thread, I hope to have this grow and become a significant support for all of us.

Blessings,
Wendy

DragonGirl · August 2007

Wendy:

Thanks for your reply. I actually just spent the last half our writing this long reply back to you and then the server timed out on me! I'm too tired to reconstruct it, but writing my reply helped me get some stuff out that I needed to, so againk thanks for our post. It was very elequent, really.....sorry you missed it!

Snooch

LisaAlissa · August 2007

Hi Snooch,

So sorry you lost your post...this site is notorious for timing out replies. My solution has been to adopt the habit of always "copying" my entire reply (as if I intend to "paste" it somewhere else) just before I hit the button to post or preview (only about 4 extra keystrokes, so well worth it ). Then if the software has timed me out when I get the empty reply window back, I can simply "paste" it back again.

Really rotten to lose something you've spent time on.

HTH,

LisaAlissa

DragonGirl · August 2007

Thanks for the heads up on that!

topo · August 2007

Hi, diagnosed '05 then recently for mets. To the left pleura lining and possibly liver. Wondering if anyone else suffers from malignant pleural effusion and if so their treatment. Thanks. Topo

wjc · August 2007

Topo,

While I do not have a pleural met, I do have two friends with it.

They have been on a variety of chemos, from taxotere, to xeloda,one had a good 6 month run on this, doxil and others. I will ask them more this wednesday.

For each of them, they decided for one reason or another, not to try to scar the pleura down to the lung with talc or antibiotic. In effect this gets rid of the space that collects the fluid. Unfortunately each has regretted not trying that , as they have now gone thru multiple thoracentesis procedures and one now has loculated fluid areas with in the pleura that would require open chest surgery to relieve and she is not a good surgical candidate at this time.

I will find out more if I can of their treatment. I do not really know the downside to scarring the pleara down, other than I have heard it requires a chest tube and can be painful during the first few days.

Hope this is somewhat helpful.

Blessings to you, Topo.

Wendy

topo · August 2007

Wendy,
Thanks for your reply. When first diagnosed with mal pleural effusion, my onc said she didn't want to do the pleurodesis, just do chemo and drain the fluid if necessary. They've drained it 3 times already. Fourth time coming up. Yet, everything I've read says the the best way to stop effusion is to do away with the space and that it's safe and effective. Not that it always works, but usually does. Also have read where mal pl effusion has a dire prognosis. I will have my scans redone end of Aug. So I'll find out then if chemo is doing any good. From the way I feel and the fluid still accumulating, it probably isn't. Hopefully, they'll show some kind of improvement. Thanks.
Topo

wjc · August 2007

Topo,

Spoke with one of my friends last night and navelbine gave her 5-6 months of good relief where she didn't need thoracentesis at all. My other friend has only been on taxol.

What chemo/chemos have you been on so far? Sounds like your onc is on top of it.

Blessings,
Wendy

topo · August 2007

Wendy,
I can't remember what I had last year, but now I'm on Abraxane and Astavin. Abraxane once a week for three weeks and Astavin on the first and third treatment. I had a chest xray today. Will get results in next couple of days. I've been in alot more pain since the last thoracentisis. I'll be having bone scan and body scan last week in August so I'll find out then if it's working. My tumor markers have gone down so that's a good sign. Thanks for your information. How are you doing?
Topo

wjc · August 2007

Topo,

So glad to hear about your tumors markers and a re-eval soon.

Even though they say the tumor markers don't mean alot, they must mean something because "they" (the oncs), always like to have them.

I am in between chemos right now, was on my first ever chemo, taxol and Gemzar, but the taxol was really hard on my liver so i had to stop. Next up, xeloda , when my liver returns to normal(maybe as soon as next week).

Gemzar hit my bone marrow hard, which was my primary metastatic site , so I am a little anemic, but trying to ignore it and enjoy.

Thanks for asking, hope the "scanxiety" over the next few weeks is tolerable for you, please keep me informed. Do you have a medical background? You appear very comfortable with the medicalese.

Blessings,
Wendy

wjc · August 2007

Hey Snooch,

How are you doing? At your last post the sight was messing with your "eloquent " reply.

Wendy

DragonGirl · August 2007

Hey Wendy:

Thanks for asking after me. I was off for a few days. Lots going on. I have nothing eloquent to say today. I'm OK, but that's about it. My mom has BC too and they found a second tumor in her other breast last week. She's still stage one thank god. I go to the doctor with her and try to coach her through things. She doesn't always understand, or want to understand, or listen to me. So, I'm tired. I've got my own PET scan coming up in a week and of course, I'm a bit nervous about that. But, hanging in there. It will be, whatever it is.

How are you?

Snooch

NoH8 · August 2007

Snooch that's tough! How old is your mom?

DragonGirl · August 2007

Hi Amy:

Mom is 76. She's in really good health otherwise. I say she's stage one but actually we are waiting on her sential lymph node biopsy to confirm that. She is going in tomorrow. I'm pretty terrified quite frankly that it might have spread. The oncologist said he would "fall over" if it came up positive but we've had a run of bad luck in the family lately so I'm still nervous. I have another sister that I never met (given up at birth for adoption) that was diagnosed with BC about a year before me. I only know this cause she contacted my other sister to get a family history when she was diagnosed. She left no forwarding number and mom and dad prefer not to discuss it. So, I don't know what happened to her.

The cancer seems to be genetic (although I'm BRACA negative). My cancer was very aggressive and went undiagnosed even after I found a lump and had tests. Didn't find out I had it until it had spread to my spine. I don't know what I'll do if mom's has spread. She is terrified of chemo and insists she won't do it. I have been pretty good at not worrying too much this week, keeping myself busy and all. Anyway, it would be nice for things to go smoothly for just a few months! Life's been a non-stop whirlwind between the cancer(s) and other family problems for quite some time. I know things will get better though, but exactly when? Ughhh.

Snooch

DragonGirl · August 2007

Amy:

P.S.

What's the deal with the picture with Rosie?

Snooch

Hello

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