I haven't posted very often since 2008 but hope that this may be of benefit to those with T cell NHL...
My husband has just finished his second cycle of pralatrexate (7 week cycles with 6 weekly doses of IVP pralatrexate (Folotyn), one week off then repeat as long as side effects are tolerable & there is no disease progression) and I am very happy to report that by PET/CT scan there has been significant disease regression
It's a great way to start the new year!
He was first diagnosed back in 2007 with enteropathy associated T cell lymphoma after a small bowel obstruction. A few cycles of Q 2 week CHOP then a mini haplo BMT. We dared to think that he was cured--after all, there was no evidence of disease for 4 years!!! And he was back to work, traveling & enjoying life!
But new onset back pain this past spring (2011) turned out to be caused by a tumor near the spinal cord. Everyone was shocked, especially his transplant docs. Radiation took care of the new tumor mass & a subsequent DLI seemed to be effective but only lasted for a few more months...
But by September, the lymphoma was back with a vengeance. Widespread bone mets with cord compression requiring emergent radiation to the cervical & thoracic spine. There were major pain & mobility issues but he has managed to worked through these.
But back to pralatrexate...it wasn't available 5 years ago. It's VERY expensive! But it seems to be working!
My husband has not experienced the two most common dose limiting side effects: thrombocytopenia & mucositis. He has had major issues with BLE edema & rash--resulting in a cellulitis that for all intents & purposes was a 2nd degree burn.
But he is back to work & feeling pretty good. Just want to give hope to those with T cell lymphoma--because we don't have many options--we know that pralatrexate is not a cure but we are grateful that it has given us more time with those we love.
Please contact me if you have any questions/concerns about T cell NHL or pralatrexate.
Take care & love life,