The Leukemia & Lymphoma Society - Fighting Blood Cancers
1 Reply Latest reply: May 2, 2012 8:26 PM by canusa RSS

pralatrexate & T cell lymphoma

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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 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,


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