Need advice, Refractory/Cisplatin refractory Germ Cell

[mdharris]

Greetings to all. Wanted to give you the Reader's Digest of our story. I'm a caregiver/girlfriend for Dan who has germ-cell mediestinum/non-seminoma/yok sak. Diag. 12/28/06 VIP Failed/ Surgery/ High Dose Chemo-Bone Marrow Transplant(not tandem) failed/ Gemtox failed/ now on Avastin/Oxyplatin which doesn't seem to be working. Does anyone have ANY information on Sloan-Ketterings phaseII study for Refractory/cisplatin solid tumors? They are impossible to get a hold of.

Has anyone else been through these steps? Any advise?
We communicate with Einhorn...and have a fleet of people at the cancer care center here, but everyone is quite vauge.


Any help is great...

Thanks
M

[dadmo]

M:
Take a look at this trial or this one . Dr. Motzer is running both trials and he is wonderful. When I get a chance I'll write more.

[Margaret]

MDHarris, I am sending you and Dan my love and prayers.

[dbo]

mediestinum/non-seminoma/yok sak. Diag. 12/28/06 VIP Failed/ Surgery/ High Dose Chemo-Bone Marrow Transplant(not tandem) failed/ Gemtox failed/ now on Avastin/Oxyplatin which doesn't seem to be working. Does anyone have ANY information on Sloan-Ketterings phaseII study for Refractory/cisplatin solid tumors? They are impossible to get a hold of.

I am not sure if I should just keep quite.

With the above history really the only phase-II refractory TC treatments you will fit into would be the sutent trials.
Indiana will probably also offer you oral etoposide as a option.

On the 'TC scale', mediastinum primary really is the worst possible when it's refractory.

I want to write something more positive, but I know from experience that being told by different sources that you are not 'missing' something can give some rest of mind.

Obviously there are a lot of phase-I trials, but it should be considered very carefully how much 'quality of life' you are willing to give.

For a piece-of-mind I would call with Sloan.

Was the Gemtox -> Gemox with Taxol?

I really wish Dan and everyone around him the best.

[Karen]

M,
Glad you found us...we'll do whatever we can to help. The links dadmo gave you are good. Since you're mot getting a response from Sloan can Einhorn get on that? Can you post what the marker levels are and where the tumors remain? Never, every give up hope.

[dannysbrother]

I am so sorry for not seeing this until now.

M, I just sent you a private message with my personal information in it. I may be able to provide another option that you probably are not aware of.

Contact me anytime, day or night. I will do whatever I can to help.

Michael