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Looking for answers...please help

Keri Black
Posts: 4
Joined: Aug 2010

In 2005 my brother Kevin Dills, who was 25 years old at the time, was diagnosed with a rare type of AML. Instead of being in his blood or bone marrow it was in his chest a mediastinal mass. He was experiencing some arm and chest discomfort and was having a hard time swallowing. By the time he was diagnosed...the tumor was 8 inches long. It wrapped around his aorta and extended up pushing his trachea to the side. We were told the tumor was inoperable and if the chemo did not work than he had maybe 2 weeks to live. He underwent very intense chemotherapy and radiation but it was well worth it. He was in remission for 5 years. On June 24th, 2010 we found out it is back. We are trying to pick the best treatment for him and treatment that he agrees with to hopefully to become cancer free again. Just wondering if anyone has heard of this before and know of any successful treatment. His doctor states he has never treated a case like his before. We are just looking for answers...surely someone has treated it before???

Plecofan
Posts: 12
Joined: Jul 2009

Hi Keri.

My name is Jason. I'm 37 and it sounds like your brother and I went through a similar situation, except I have ALL. In 2009, my disease was discovered because I had trouble talking and always felt that there was something inside my throat. It turns out I had the same type of mass in my chest. I then went through 8 cycles of Hyper C-Vad chemo. The mass disappeared after the first cycle, and I went into remission as well. My doctor told me I need to get a bone marrow transplant through donor cells, or the disease will come back and I won't survive. A miracle from God then happened. A donor with a perfect match was willing to donate stem cells for the transplant. I got the transplant this past June, and am doing great. I'm still in remission. Your brother will probably have to get a bone marrow transplant like I did. I think there's no other choice. I would get the doctors to start a stem cell donor search right away through the Nation Marrow Donor Program. I have a blog that I currently post to (jdchasfaith.blogspot.com), and a website on Caringbridge.org (website name is jasonclark). Please, both you and Kevin visit it and get some insight with my situation, and, hopefully, much needed info. Have a merry Christmas.

neptune999
Posts: 1
Joined: Jan 2011

I am an APL survivor 6 years out now and still in CR. I would recommend you to contact Northwestern Hospital in Chicago. The other option would be going to Mayo Clini in Rochester I have experience with both locations; furthemore, I would say Northwestern is better.

clairmccormack
Posts: 9
Joined: May 2010

Hi,

My mom was diagnosed with AML and an anterior mediastinal mass in her chest as well. She did several rounds of chemo and the mass got smaller - the first induction put her in remission but then it came back. She had more chemo which had little effect on the disease. We were at sloan and they said that we could try a clinical trial but everyone who had tried that one died from it or from complications shortly after so we opted out. We are now at NY Presbyterian Cornell (sp?) in nyc. They had a different clinical trial that she finished along with more chemo and she just had a bone marrow transplant yesterday. We are hoping that the cells stick and she is in remission from it. I believe the transplant is all you can do to keep the disease away. I will pray for your brother. I know how difficult it is and I am going through it now. Stay strong and positive.

Where is your brother recieving treatments?

Claire

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