Looking for options - sarcoma spreading

I'm looking for some thoughts and options on my husbans sarcoma. You may have read some of my posts, - 47 YO Hubby, Sarcoma in deltoid in 05, chemo (cisplatin/dioxiruben - sorry for spelling), then surgery got zero margins.  Spring 08 showed up again, mets in acromium (shoulder) - surgery - zero margins.  Fall 08, mets in lung and pelvic area - chemo (gemzar / taxol / sutent) till Feb 09 (minimzed lungs, but still had 1 tumor that was not responding), then radiation for pelvic (cleared).  Then on temodor (OK) and sutent (allergic reactions, which was weird since he tolorated 2X the amount in the fall....) Now (June 09) mets in spinal area which has resulted in him being in hospital right now unable to walk - legs affected and we have started radiation on those tumors. 

We are working with a great Dr at Sloan who we adore  and has a clinical trial idea, just thought I would reach out here to see if anyone has had expierence with Sarcoma and can share their thoughts. 

We are fighters and will do whatever we can to beat this.  God Bless you and thank you!

On 6/10/2009 auntgladys wrote:

I'm looking for some thoughts and options on my husbans sarcoma. You may have read some of my posts, - 47 YO Hubby, Sarcoma in deltoid in 05, chemo (cisplatin/dioxiruben - sorry for spelling), then surgery got zero margins.  Spring 08 showed up again, mets in acromium (shoulder) - surgery - zero margins.  Fall 08, mets in lung and pelvic area - chemo (gemzar / taxol / sutent) till Feb 09 (minimzed lungs, but still had 1 tumor that was not responding), then radiation for pelvic (cleared).  Then on temodor (OK) and sutent (allergic reactions, which was weird since he tolorated 2X the amount in the fall....) Now (June 09) mets in spinal area which has resulted in him being in hospital right now unable to walk - legs affected and we have started radiation on those tumors. 

We are working with a great Dr at Sloan who we adore  and has a clinical trial idea, just thought I would reach out here to see if anyone has had expierence with Sarcoma and can share their thoughts. 

We are fighters and will do whatever we can to beat this.  God Bless you and thank you!

You are going through a lot and I can identify; it is hard, I know.  He is lucky to have a loving wife like you by his side.  I have had leiomyosarcoma for almost 16 years and have had 12 + surgeries...and counting.  I just had a test this week which shows a suspicious looking "thing" on the tail of my pancreas which, if I have my way, will come out.  I am very aggressive with my treatment and it appears you are also.  You are so lucky to have a doctor that you "adore" ...that is good.  I saw a sarcoma specialist in Seattle who I thought was terrific and she told me about a clinical trial called  ET-743 Yondelis.  It soulds like you are in good hands and are doing everything possible; I applaud you.  Never give up and keep having faith.  If I can do anything, please drop me a lilne.

God Bless,

Brenda