We had this topic previously and it is no longer out here and several people connected and we helped each other out. I am curious to know what happened?
I contacted csn. They couldn't find the topic, but I gave them details from my printouts, and it was found. However, I was told the search function was broken and they were passing it on to the tech support. I just tried a search and it is still not working. You can get to our previous discussions here: http://csn.cancer.org/node/136135. Since it isn't searchable, though, there aren't any new posts. I'll inquire again, and see if I can get an update. I let them know it was a very valuable discussion group for all of us.
Hi Gretchen -
I agree that the previous thread was extremely helpful in providing information about this rare diagnosis. My best friend's brother was just recently diagnosed and has no history of immuno-suppressant medication use. In your previous posts (on the other thread) you mention that your doctor was part of a consortium of t-cell specialists and that they were creating an online database. Has this database been completed? Can other doctors outside of the consortium access this information? Thank you so much for helping to get this thread started again. Please accept my heartfelt condolences on your loss, you and your family will continue to be in my thoughts and prayers.
A member of my family was diagnosed with hepatosplenic tcell nhl in February. He is preparing for a bone marrow transplant at City of Hope in about 5 weeks. Both of his brothers were found to be a match. He is 54, previously in great health, did not take any of the drugs I read about previously on this chat room (where did it go--this is the only source of info like this that I've found on-line!). His doctors don't know how he got it. I am wondering if people know--if he survives the bone marrow transplant and it is successful- does he have a good prognosis? I know so many have not made it. I think one person on his City of Hope team has treated this HTNHL, and they have a strong opinion about how to proceed. But if any have successful treatments, I'd like to hear more about them.
I have seen posts from so many strong, amazing, and wise people on this discussion board. Thank you for the inspiration. And to those who are the bereaved left behind--thank you for the care you've given to others following in your footsteps.
There are survivors. I am one of them.
I was diagnosed with Hepatosplenic gamma delta T Cell Lymphoma in 2004 at age 46. I was fortunate to be living in Houston TX when I was diagnosed and received treatment at MD Anderson. I was treated with chemotherapy (Pentostatin and Campath) followed by a stem cell transplant in May 2005.
It has been a difficult "recovery" but I always felt I was receiving the best treatment at a world class facility. My oncologist, Dr. Sdran Verstovsek, and the Bone Marrow Transplant Team at MD Anderson are outstanding.
I wish you well with your family members treatment. HSTCL is a dreadful disease but I think there is a more hopeful prognosis for those with successful stem cell transplants. My daughter, 35, was diagnosed with HSTCL in January of 2010. She was treated at the University of Nebraska Med. Center in Omaha by Dr. Julie Voss. After 4 rounds of IVAC chemo she went into remission. Her brother is a perfect match and on June 14, 2010, after another round of difficult chemo, she had a stem cell transplant. She is still in remission April, 2011. We are very happy with her treatment at UNMC. I would strongly recommend a visit to Omaha for a visit with Dr. Voss for anyone diagnosed with HSTCL. Our daughter did take Remicade and Emuran for Crohn's before her diagnosis.
FDA today released a safety communication on reports of hepatosplenic t-cell lymphoma (HSTCL) among those receiving biologic and/or thiopurine immune-suppression for the treatment of Crohn's Disease or Ulcerative Colitis, two forms of inflammatory bowel disease (IBD). This is the first time that an FDA update has focused on the risk of HSTCL to IBD patients receiving this form of treatment.
In February of 2009, an article by FDA staff in the Journal of Pediatric Gatroenterology and Nutrition reported 15 cases of HSTCL following immune-suppressive treatment of IBD. Today's update (which includes cases reported or known as of 12/31/10) reported 43 cases, 35 of which had resulted in death as of 12/31/10. Although today's safety communication failed to highlight the significant difference in cases by gender, the table in their report shows that, of 39 cases of HSTCL in which gender was identified, 34 were males.
The other information that I've posted on the other Cancer Survivors' Network HSTCL thread was based on internal FDA documents that I had been able to obtain; they had not been made public. Therefore, today's safety communication is an important public acknowledgement by FDA of the many HSTCL deaths which have occurred in the past few years.
Here is the link to the safety communication:
I am very sorry for your loss and suffering. My 15 year old son does not have HSTCL, he does however have Primary Sclerosing Colangitis / Autoimmune Hepatitis overlap syndrome of the liver. This is an autoimmune disease that attacks the liver and will require him to have a transplant sometime in the next 20 years. For reasons unknown, when a person has this disease, 75% of the time they also have an IBD. This is the case with my son. He has an 'indeterminate IBD", doctors can't determine the type. He has never had any symptoms of the IBD and was only diagnosed after the liver problem was identified. In order to put off the transplant as long as possible, the current and only treatment is to immunosuppress him. So he takes 37.5 mg of Aza every day. This has gotten his liver under control and as a byproduct has probably reduced the inflammation from the IBD that was seen on his colonoscopy. Again, the IBD was never bad enough to cause any symptoms. We only let his Gastro start the Aza after much consultation with him and our own research to determine that the Aza was the least risky of the 4 or 5 major immunosuppressants on the market. He has been taking the Aza for 11 months now, when I came across your forum recently. After reading all of your previous posts (before the technical problem) I still believe that for us the Aza is probably our only recourse due to the liver. Question-Were your loved ones ever tested by Prometheus Labs as to whether they were "Normal" metabolizers, or "Intermediate" or "Non"? (If they were Non, the MDs would not have used Aza, so the question is really Normal or Intermediate.) I don't think this has anything to do anything, just curious, as I find myself researching every darn thing I can read while my son is on these powerful medicines. Thanks