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My Dad has just been diagnosed with HSTCL

Mamma Bear
Posts: 2
Joined: Feb 2015

Hi everyone

I found your page when trying to come to grips with my Dad's diagnosis and understand a bit about this type of lymphoma.

My Dad is 68, and in October 2014 went to hospital after having had some really bad unexplained bruises. One simply appeared before his eyes after shaking a shaving can. He was diagnosed with ITP, and began a course of steroids, then the intragam infusion, and was sent home a couple of weeks later being told to get weekly blood tests and don't do anything too strenuous. Then in mid December 2014 his weekly blood test results showed platelets of 16 and he was hospitalised again. They decided to remove his spleen, which was not in great shape. That didn't fix things, and eventually he was diagnosed with ATLL, which was further refined to be HSTCL. On Jan 21 he suffered a massive bleed on the brain, and a stroke (around about the same time as the bleed) Quite miraculously he defied all the odds and survived pretty much unscathed. He had just started on a course of dexmethasone in preparation for his CHOP chemo, and they believe the anti-inflammatory action of the dex reduced the swelling significantly, and is the main reason he is still with us. :) Dad has had one full course of the CHOP chemo, and Doctors have only given him a 50% chance that it will do enough to give Dad remission. :( Dad was diagnosed with Crohns in 1993, and then started on Imuran in 2002. We know full well that Dad's age is against him, and from what we have read, he sounds like one of the oldest people to be diagnosed with HSTCL. Given everything he has been through with the bleed and stroke in the last few weeks, he's defintely shown what a fighting spirit he has, we very much hope this determination kicks the cancer into remission for a while anyway. But who knows.

po18guy
Posts: 1098
Joined: Nov 2011

All T-Cell Lymphomas are rare, and most of them aggressive. Of the many varieities of T-Cell Lymphoma, there is only one that responds well to CHOP, and HSTCL is not that one. Quite often, Etoposide is added to make the mix into CHOEP, which tends to be much more effective. Any and all T-Cell Lymphomas need the attention of a T-Cell specialist. Here is a foundation that is dedicated to T-Cell patients: http://tcllfoundation.org/  They maintain a list of acknowledged T-Cell specialist who may be consulted for advice on diagnosis and treatment here: http://tcllfoundation.org/resources/

Where are you located? 

danyabushey
Posts: 6
Joined: Oct 2014

Mamma Bear,

I'm sorry to hear about your father. Time is of the essence - if you've done research, then you will see the results are grim. Every day counts. My nephew will be celebrating his 21st birthday next week, and 3-year anniversary of his bone marrow transplant this coming May. He's cancer-free, Crohn's free, and doing amazing.

 

His MD was Dr. Stephen Horwitz at Memorial Sloan-Kettering Cancer Center (MSKCC) in NYC. He is listed on the link provided in the post below; he has treated the most cases of HSTCL, and had the most success I might add. The head of the Lymphoma Dept. there, Dr. Anas Younes, is also remarkable - he came from MD Anderson and knows his stuff.

 

http://www.mskcc.org/cancer-care/doctor/steven-horwitz 

http://www.mskcc.org/cancer-care/doctor/anas-younes

 

I cannot again express the importance of contacting them immediately if your dad wants to fight this. Time is of the essence and at this point in time, bone marrow transplants are the only cure. I will say that some amazing progress has been made in the medical field in regards to immunotherapy with cancer, so it's possible that Dr. Horwitz and team have found even more successful treatments.

If you have any other questions, feel free to email me at danyabushey@hotmail.com.

Blessings,

~Danya

Mamma Bear
Posts: 2
Joined: Feb 2015

Hi Danya and po18guy

Thanks very much to you both for your comments. We are all based in Australia, but from what I understand my Dad's specialists have been in touch with other specialists across the world, at least, throughout Oz. I believe given my Dad's age, they may not do a bone marrow transplant. I just don't know. I suppose if the chemo does not appear to be working, it might be something they consider. I think too that given my Dad has such low platelet counts, they probably wouldn't add the Etoposide to his chemo mix. His platelets have been as low as 3.

Dad had his second round of chemo a couple of days ago, and so far has coped with it all incredibly well. He saw his specialist a week ago and they seemed to believe that something was doing something positive :) Probably too early to tell if its the chemo or the romiplostim, or both, or something else entirely!

Anyway, we are just so grateful for the time we have with Dad now. After surviving the bleed, everything now is a huge bonus!

Thanks again

Lorriexoxo
Posts: 5
Joined: Nov 2015

hi Mamma Bear,

how's your dad doing?

Lorrie

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