Tampa area BCO sisters get togethers

firework1068

I have in laws the week of 30th -5th. Keep us posted!



Lorraine

Anonymous

This week I could do Monday or Thursday.  Next week, I could do anything but Wednesday.  

FLwarrior

I am not brave enough to try to get to South Tampa on a week night in rush hour traffic from where I live.  Have fun and keep us posted.

Lee7

FLwarrior, I hear you.  I hate traffic. 

Galsal

Aww, South Tampa isn't the end of the world.  Do realize traffic can be a frustrating thing though. 

MondaysChild

Roll call: Who's up for this Tuesday, 6pm-ish?

SpecialK

I will probably be out of town but not sure yet.  DD needs to go to the east coast of FL to pick up her boat - I will be riding shotgun.

Galsal

Me!

firework1068

In-laws here until the 8th of April. Have a great time.

SpecialK, have a safe trip.

Lorraine

SpecialK

firework- thanks and have fun with the family!

MondaysChild

Lorraine, enjoy your family.  I see in your signature line that you have a procedure scheduled for May 8 related to reconstruction. What are you having done?

SpecialK, have a safe trip across the state and back.

Galsal

WoooHOOO SpecialK....Road Trip! 

SpecialK

galsal - the only problem is that I have to deal with the DD's erratic driving, which scares the daylights out of me- I bury my head in a book the whole time! Not so bad going over to drop off the boat because it was late at night and no traffic.  We do have fun though!  She apparently must have Slim Jims for a road trip, who knew?

Anonymous

I think I should be able to make it Tuesday night.

Galsal

I do the same when DS drives too, SpecialK.  Great bonding trime for you two. 

I'm looking forward to see those who can make it on Tuesday evening!

Galsal

Ladies, I'm going to speak with the Onc when I see her on Thurs to see about trying a different AI.  Can't do Tamox.  Armidex (generic) gave me multiple headaches daily.  Femara (generic) has killed my hands and I need to keep doing my job for gainful employment.  There's a distinct possibility that the VA won't permit an off-formulary AI without a great fight and time involved. 

It may well be that I'll need to get an Onc outside the VA to work with.  Have any recommendations of Onc?  I've got UHC med insurance. 

Harrumph!  Just checked the VA's forumulary. 
Aromasin is restricted for advanced stage cases that do not respond to the other AIs.  Damn.

Thanks

firework1068

Mondayschild,

Yes, I'm having a third try with reconstruction. Basically, they're going to raise the left to match the right. The right has contracture and the left is WAY to heavy! I hope this time it's successful, I'm ready to move on.

Thanks for asking,

L

firework1068

GalSal,

How long were you on each AI? I know they all have side effects and I remember the initial headaches with Arimidex........I can't remember when they went away.



L

kira1234

Galsal, Is it the VA that only uses Aromasin for late stage people? I tried it briefly and I'm sure not late stage. As far as an Onc. I go to Dr. Wright and like him very much. He has an office in Tampa.

firework1068

Hi again!

One more thing. I find out the results from that thorough ultrasound on the lump-bump, will let cha know.



L

Galsal

L, may your recon go divinely!  I was on generic Arimidex from Aug to Nov and generic Femara from Nov to now.  Prednisone helped the hands greatly although it took nearly the entire 21 days to do so.  Now they're back on the down swing again.  They appear Rheumatoid-ish but tests all say no and xrays do not show destruction so it's highly likely Rheum will say it's the AI causing it.  Have lived wearing hand braces at night since Nov and since Jan during the day also. 

Perhaps not having gone through chemo, for which I'm eternally grateful so don't misunderstand, left me with a different way of looking at the SEs I get from these AIs.  Sure hope I'm not coming across as a whiney assed wuss.  Some days I think I'm major wimp about pain then I realize may not be since have had Arthritis in one hand since age 22 that I've lived with for the past 31 years. 

Thank you, Kira.  Yes, it's the VA hospital about the Aromasin.  Onc had told me before there's two AIs we can use which was the Arimidex and Femara.

Anonymous

Galsal -- I see Dr. Cogburn with Florida Cancer Specialists, and I think she is really wonderful!  I've heard good things about Dr. Wright there as well. 

Galsal

thanks, nb.  will look the good dr up then. 

Lee7

Hi everyone!  I'm just catching up here...    Put me down as a 'maybe' for Tues night.  I really want to go but its the darn night-time driving and having to get up so early for work during the week. 

Sal, if you can't get aromasin, maybe try a different manufacturer of arimidex or femara. Supposedly they use different fillers and maybe one maker's version might work better for you. 

fireworks,  hope your ultrasound results are good news.

 

 

MondaysChild

Galsal: David Wright is my oncologist as well and I highly recommend him.  We can talk hands on Tuesday as you know what have had the same thing.  Don't chalk it up to Femara just yet.  My problem started during chemo, which you did not have, and persisted through the start of Femara.  I got worse but I do not think from the Femara, but rather a continuing progression of what was going on before Femara.  The very short and simple surgery took care of it very well and very fast. Still on Femara after the surgery and still no hand pain. See you Tuesday!!

nbnotes:  Thrilled you can make it.  I look forward to seeing you.

Firework: Sorry to hear of your recon problem. You look great and I was unaware of the problems underneath.  I can certainly empathize with you as I have similar issues in the asymmetry and continuing pain that cannot really be seen from another's perspective.

SpecialK

galsal - can your doc at the VA write a paper prescription that you fill off-site?

Galsal

Thanks Ladies.  K, the answer is a resounding No.  MC, where are we all meeting up, the usual place?  To go for a different mfr of any med at the VA is tantamount to going off-formularly.

The good news is that the Oncs suggested are all in my plan.  Hooray.  Unless the hands change drastically before Thurs morning, Onc will see how they are.

See you all who will be there this evening Ladies!

MondaysChild

Galsal: Yes, normal haunt tonight.  I get out of physical therapy at 5:30 and will change fast and be up there around 6pm.

ameron

Aw, sorry i missed you guys, didn't see this in time .  Hope you had fun!!!!

Ameron!

MondaysChild

We missed you, too, Ameron.  "Favorite" this thread and when you sign in, it will tell you if there are new posts.  I think you can even have it send a message to your phone.