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Looking for inspiration


#1

Or something to give me hope. Has anyone here, or do you know someone who went on oxygen (mets in the lungs), and was later able to go off of it as a result of some treatment? I just can't help but feel I am in the final phase of this disease, and am having difficulty with that. I'm hoping for a little hope.

Also, would you recommend I try a new phase II trial or do High Dose IFOS. I had response from standard dose IFOS in the past before it stopped working, but am fairly certain, in my gut, that High dose would give me some response/stability. I guess then the question is, how much am I bringing down my quality of life to extend it just a little?


#2

Not sure where you are located, but Dr. Chawla here on the West Coast is the reknown expert for sarcomas. I have been with him since 2005 and I traveled 700 miles to get there. He has many clinical trials and I have heard patients say the Drs. had sent them home to die and Dr. Chawla saved their life. I know he did mine in 2005. I had nine mets in my lungs and was basically sent home with no referral and I just happened to seek out a surgeon who mentioned Dr. Chawla and I went to see him and was placed on the Yondelis trial which saved my life! Make some calls, and if necessary do as many consults as you can. Dr. Chawla's clinical trial coordinator is Vicky Chua and the # is 310-■■■■■■■■. The best time to call is early AM or near the end of the day about 5PM PST. I'm sure there are others on the board that may have other suggestions. Also Sloan Kettering has a lot of clinical trials...I saw Dr. Gary Schwartz there once. They were going to perform a Lung Perfusion...so check out that procedure as well. But the key to survival is acting fast! If you need travel assistance there are many orgs. that can help. Contact the American Cancer Society. They have lots of resources. Good luck and don't give up...I have 21 years and still fighting! There is something out there for you.

Keep Hope Alive!


#3

Drake, my thoughts on this is to push your current medical team for answers and treatment options. They know you situation best. Verbalise your concern that you jointly running out of time and you want to explore other viable options. As you have identified you need to balance this with quality of life.

Amougnst all this you need to find strength and peace. Its very scary going through what we are going through and trying to put this aside and focusing on quality time with friends and family seems to be a good thing to do. I find that this give me strength plus it distracts me from the medical stuff.
Depending where the energy levels are at, it mighty just be a movie or nice meal.

Kia Kaha Drake.

Kind regards Gary


#4

thanks so much for sharing Drake!


#5

Thank you for the great advice. I try to have as much quality time with friends and family. I have been finding this difficult as I can't seem to shake the anxiety that I feel. I wish I could just be in the moment if only a little, but I am having trouble at this. Thanks again Gary I really appreciate the advice.

Gary T said:

Drake, my thoughts on this is to push your current medical team for answers and treatment options. They know you situation best. Verbalise your concern that you jointly running out of time and you want to explore other viable options. As you have identified you need to balance this with quality of life.

Amougnst all this you need to find strength and peace. Its very scary going through what we are going through and trying to put this aside and focusing on quality time with friends and family seems to be a good thing to do. I find that this give me strength plus it distracts me from the medical stuff.
Depending where the energy levels are at, it mighty just be a movie or nice meal.

Kia Kaha Drake.

Kind regards Gary

#6

Thank you imaFighter91. I took a look at some of the trials online and gave Vicky a call. Don't think I will be able to relocate from Wisconsin for clinical trails though. Thanks again!

imaFighter91 said:

Not sure where you are located, but Dr. Chawla here on the West Coast is the reknown expert for sarcomas. I have been with him since 2005 and I traveled 700 miles to get there. He has many clinical trials and I have heard patients say the Drs. had sent them home to die and Dr. Chawla saved their life. I know he did mine in 2005. I had nine mets in my lungs and was basically sent home with no referral and I just happened to seek out a surgeon who mentioned Dr. Chawla and I went to see him and was placed on the Yondelis trial which saved my life! Make some calls, and if necessary do as many consults as you can. Dr. Chawla's clinical trial coordinator is Vicky Chua and the # is 310-■■■■■■■■. The best time to call is early AM or near the end of the day about 5PM PST. I'm sure there are others on the board that may have other suggestions. Also Sloan Kettering has a lot of clinical trials...I saw Dr. Gary Schwartz there once. They were going to perform a Lung Perfusion...so check out that procedure as well. But the key to survival is acting fast! If you need travel assistance there are many orgs. that can help. Contact the American Cancer Society. They have lots of resources. Good luck and don't give up...I have 21 years and still fighting! There is something out there for you.

Keep Hope Alive!


#7

At one point I had a lot of anxiety and went to a consultant (Psychologist) to discuss. My anxiety was mostly around this blog topic http://www.synovialsarcomasurvivors.org/profiles/blog/show?id=63009…

Sharing and reading about it help me hugely. Also I have faith (Christian) which also helps although not as much as a outsider might think e.g. you don’t want to leave your family.



Your anxiety will be different, work out what it is and work on it.

Good luck.

G