Hepatosplenic Delta Gamma T-Cell lymphoma - for other people diagnosed

Hi again , thank you for putting this up as it is always good to have information available like this for those looking in at the start of their journey.

All the best.

cornelius, if I have learnt one thing, it is that hope always remains. I have read your story and it is inspiring. Very sadly, many T-Cell patients tell of similar. I believe there are a few specialists in the States with some experience in it. Dr. Owen O'Connor at Columbia University, Dr. Steven Horwitz at Memorial Sloan-Kettering Cancer Center, Dr. Andrei Shustov at Fred Hutchinson (has saved my life 4 times now) and quite a few others oi the T-Cell Consortium.

It was my 7th regimen - 5th "salvage regimen" that placed me in full response for transplant. That was over 5 years ago now, and a prognosis could not be assigned to me after my second relapse in 2014. At the end, I had two T-Cell Lymphomas and AML precursor Myelodysplastic Syndrome simultaneously. 

Hope does not disappoint.

poguy, thank you. Stories of hope help. As everyone knows, it's sometimes very hard to maintain hope. I know I get very caught up in the 'Stats', and forget that each case is individual. Your story is one of the amazing ones, about keeping hope through impossible odds. Thank you.

You are most welcome. We are a very exclusive group. I say bin the thoughts of statistics and prognoses. All that truly matters is if you persevere with the best treatment available. Looking forward, a 0% chance of survival could easily be depressing. Looking back on it, brillisance on the part of the hematologist and simple doggedness on the part of patient and caregiver have transformed it into an example of human triumph.

Hi  your story is very inspiring. A close friend was recently diagnosed with cutaneous gamma delta t cell lymphoma and she is desperately trying to find other people in the same situation. Any ideas on how to find other patients?

Hi Mfdz and welcome to this corner of the community but sorry to hear about your friend. Being diagnosed with one of the rare types of Lymphoma can be challenging, especially when you are trying to connect with others who have the same or near the same diagnosis. 

I was diagnosed with my type of T-Cell in 1999 and it took 16 years before I connected with someone with the same condition. Let’s see if the members are still looking into the site.

Your friend my want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.