I am looking for someone who has had Angioimmunoblastic T cell lymphoma with a relapse after stem ce

po18guy said:

There is hope
I am being treated for Peripheral T-Cell Lymphoma, another rare T-Cell Lymphoma which is similar to, and treated with many of the same drugs as AITL. It sounds like he has had a transplant of his own stem cells (autologous). Sadly, those are not considered a cure in T-Cell Lymphomas, but rather, a delaying tactic. I know of some on various forums who have had an auto, then gone on to an allogenic transplant. The trick is getting into remission while healthy enough to endure the transplant. T-Cells are aggressive and time is of the essence. We have about two chances to stop them before time simply runs out. It can be absolutely crucial to obtain a second opinion on both diagnosis and treatment, as mistakes do occur. As to treatment, there may be several options. A clinical trial may be the way to go, since they are generally far less toxic than standard chemo and represent the latest in technology. I was in the phase II trial of a formerly experimental drug, Istodax (aka Romidepsin, Depsipeptide, FK228). I have received it continuously since March, 2009. It has kept my T-Cell Lymphoma in hiding, which is very good, since I am not a candidate for an allogenic stem cell transplant. I believe that Istodax may be in clinical trial for AITL.

Doctor has told me, in practical terms, that an autologous transplant essentially resets one's cancer clock, but that clock begins running again immediately post-transplant. The alarm is set on that clock, but no one knows when it will sound. What Istodax has done for me, and others, is to stop the clock. How long it does this, no one knows. In my case, it has been just over three years now. And time is golden, as it allows for additional therapies to become available. As well, the longer it remains in hiding, the less likely it is to arrive for a third time. There are patients who are living from clinical trial to clinical trial.

There are several other treatments under investigation, as well. Here is a link to an information sheet form the Lymphoma Research Foundation: http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/ANGIOIMMUNOBLASTIC11.11.PDF

Second opinion. Clinical trial. The two biggies, in my mind.

po18guy said:

Someone survives every cancer
This is a rare one and you will encounter very few who have it. Yet, nearly all T-Cell Lymphomas are similar in their aggressiveness, the lack of a standard treatment for them, as well as the drugs that are used against them. Your friend has more options than I did, and I have four years into this. He really needs to consult with a T-Cell Lymphoma expert, if he can. These are nothing to mess with, and whatever treatment is decided upon must be immediately effective, or an alternative regimen should be considered. A lot of general oncologists want to throw the standard regimen of "CHOP" at anything lymphoma, but T-Cell Lymphomas may just laugh at it. If the chemo is not effective, it is only helping the cancer to kill the patient.