I think I have a problem

Dear Annie,

It is a bit strange that Gary (the FORMER BS) is pursuing you for an office visit.  However, my husband (who is part of the medical community) and I still feel that Gary is nervous and is trying to do some fine tuning, vis a vis your case. He does not know what you're thinking regarding litigation, nor does he have a good feeling about your discussions about his treatment, with others in the medical community.  He'd like to feel you out and try to do some damage control. He's obviously not pleased with the direction that your case took, and he wants to be sure that he has his bases covered (as much as is possible.)  Perhaps there was talk of his protocol causing side effects that you got...who knows what his fears are. And of course you know that it is very hard to get funding for clinical trials. It certainly makes him appear a concerned, compassionate healer if he's available and monitoring your case even after you have left his trial.I may be wrong, maybe he is just a nice guy who wants to metaphorically hold your hand during an office visit, but that is what I think.

I am available on either the 4th or 5th of January in Paris.  I will emal you off-line and we will exchange contact info.  Oh my god, just 2 girls who want to have fun in The City of Light.  Let's invite our main men also, d'accord?

Happy Thanksgiving to all of us; boobless and/or reconstructed, happy or sad, BUT BEAUTIFUL BECAUSE WE ARE FIGHTING THE GOOD FIGHT AND ARE ENNOBLED WITH COMPASSION AND KINDNESS BECAUSE OF THIS.

femme 

I'm inclined to agree with AnneW and femme that a letter to the BS, formally removing him from your case, is in order. It could be done with a phone call, too, but you don't seem to want to have any first person interaction with his office, so a letter is fine.

I still see my BS, but on an ever-lengthening basis: one-month, next will be three months, and I'm sure there will be a follow-up six months after that. He's just checking to see that my incisions are healed and aren't forming scars in a way that is painful. In the Spring, he'll remove my port when my onc gives the OK. 

If, for some reason I decided not to continue with him, I would let his office know, and ask that my records be transferred to a new surgeon. I think that's standard protocol within the medical community. It happens all the time with companies changing insurance underwriters and patients having to find doctors that accept the new plan. Granted, that's a more benign reason, but it ends up being the same thing.

There is a possibility that although you are off the trial, the protocol calls for follow up visits to obtain information on any long term  problems that may show up or any  long term benefits of the shorten dosing regime.

hope your holiday was special Annie.

FlaLady I hate to jinx myself by typing it, but so far so GREAT w/ Navelbine for me.  I had to miss tx last wk due to low counts, and I was sooooo disappointed because it's actually working for me, unlike Taxol or Ixempra/Xeloda.  I am taking Avastin w/ it and am very optimistic ~ my pelvic node has shrunken considerably and my skin mets have lost their lumps and are actually fading... it's pretty exciting!!!  Next wk I have CT & bone scans... not sure why no PET this time, but I'm hoping my lung mets have also faded away to nothing.  I have pretty much decided to hold off on the stem cell transplant since the Navelbine is working... not sure I can justify stopping a tx that is working to do something extreme that might or might not do anything for me.

Edited to add Tarceva is also an option for TNs who are HER1+, so that's a possibility for the future as well... still not sure if I'm HER1+ or not, but supposedly 80% of TNs are.

I did 3 mos and had nothing but progression... we kept waiting for response since median time to response is 8-12 wks or something like that.  If you are actually showing response I think that's a great sign ~ I never saw ANY improvement, only progression.

I have 2 doggies ~ Daisy is the black & tan one and Violet is the yellow lab mix.  Both of mine are rescue dogs, too and it's Violet who is my hero ~ the day we adopted her she got into poison ivy & jumped on me, and I ended up w/ hives all over my chest/abdomen.  When I was slathering Benadryl on the hives I found my lump... she is my hero!

ibcspouse, I started Navelbine 3 wks on, 1 off.  Neuropathy continued, so I thought it was leftover from the Ixempra/Xeloda, but after a while realized that it's from the Navelbine.  I've started taking B6 & I do think it's helping.  My biggest pblm is my blood counts have taken a hit ~ my onc isn't convinced it's specific to the Navelbine; more likely because I've had so much chemo overall.  I am also on Avastin every other wk, so we just switched my Navelbine to every other wk as well, hoping to give my WBC a chance to recover between txs & possibly minimize neuropathy.  I have a CT tomorrow so I will also have labs done to see what my counts look like ~ if they are low will have Neupogen, but hopefully am ok.  Bone scan Tue so will hopefully find out that all this bone pain is simply chemo related, not mets.  I am so hopeful, though ~ my skin mets are looking better every day so I am hoping it's working everywhere... I hate this disease.