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T-Cell Lymphoma patient education forum, Honolulu, Hawaii September 2nd, 2017

po18guy
Posts: 1009
Joined: Nov 2011

The T-Cell Leukemia Lymphoma Foundation is conducting a patient education forum in Honolulu, Hawaii on Saturday, September 2nd, 2017. It will be presented at the Waikiki Beach Marriott from 8:30 AM to 2:30 PM. As always, registration (required, but free) is easily done online. A continental breakfast and lunch are provided. A great opportunity to hear from, and interact with one of the luminaries in the T-Cell Lymphoma world, Dr. Andrei Shustov of Fred Hutchinson/SCCA/University of Washington. Both systemic and Cutaneous T-Cell Lymphomas will be discussed. Additionally, doctor's registered nurse will address issues relating to treatment and side effect management. There will be a three-time T-Cell Lymphoma and Myelodysplastic Syndrome survivor there to provide a patient's perspective. Patients, caregivers, family members and medical providers are all invited. The information available there can be crucial to a good outcome with these rare and difficult lymphomas.

po18guy
Posts: 1009
Joined: Nov 2011

This is a free seminar and breakfast/lunch are provided.

Fiat127
Posts: 10
Joined: Nov 2017

Hi,

New user.

Would be grateful if you could cast some info on this spcecific topic and how the conference was.

Thank you

PBL
Posts: 184
Joined: Jul 2016

Fiat127,

Depending on what your motivation was in "unearthing" this old post, you may be interested in attending the upcoming patient education forum in Seattle this Saturday.

Here is a link for your information:

http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9284029

PBL

 

po18guy
Posts: 1009
Joined: Nov 2011

However, there are webcasts that provide some of the more recent research data:

http://dream.presentme.com/audio2016/20161029LRFAnsell/

http://dream.presentme.com/audio2015/10032015LRFPro/

http://www.presentme.com/audio2012/20121111LRFShustov/

Family1st
Posts: 2
Joined: Nov 2017

My brother was recently diagnosed with Hepatosplenic  T-cell Lymphoma, Alpha-Beta type.  I am still in shock, very worried and sad.  His doctors said his is the best case scenario because it was the alpha-beta type and he responded so quickly to the med that removed the uric acid from his blood.   He’s completed his first round of chemo.  Four days later he is back in the hospital with very low WBC count.  He recieved two blood transfusions and is now feeling much better.  

I want to be hopeful but its difficult when it’s such a deadly aggressive illness.   why is the Alpha-beta type “better”? And what does that really mean?

Are there any survivors on this forum?  

po18guy
Posts: 1009
Joined: Nov 2011

And moist of them are aggressive. HSTCL is rare, even in the T-Cell world. I hope that your brother has a T-Cell Lymphoma specialist (not an oncologist and not a hematologist), as that often makes the difference in survival. I have been diagnosed with PTCL-NOS as well as AITL and so far (since 2008) have survived both.

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