Understanding Peripheral T-Cell Lymphoma with Pierluigi Porcu, MD

[@KayAhern]

Romidepsin saved my dad from dieing . He is on a trial with romidepsin and still alive 4 yrs this week . He continues on this trial at Christie’s Hospital . Manchester . U.K

[@ntwyman5079]

Hello Kay, Thank you for your response. Could you give some specifics as to his diagnosis and treatment prior to Romidepsin? How is he going now? Thx!

[@KayAhern]

@@ntwyman5079 no problem he had first chop which is standard for lymphoma he responded well but it came back immediately then gem P which was the only other drug available under the nhs . He again responded but it came back before treatment ended. Hospital said the could do no more and had no other drug to give him so my and my sister contact Christie’s for an appointment . My dads on a trial called romicar - which is romidepsin and carfilzomib for people with peripheral T cell lymphoma that has come back or treatment has stopped working . He was getting illergic reaction with the combined so the doctor stopped the carfilzomib and continued with romidepsin which has been amazing. This lockdown my dad has developed a form a skin cancer separate from his lymphoma so her had it removed and needs a little radiotherapy to make sure it all gone . It’s right next to his eye . He remain positive and he’s Irish so his sense of humour keep him going and us all xxx My dad has Angioimmunoblastic T-Cell Lymphoma he’s is the longest at Christie’s on this trial and it’s saved my dads life x it’s not anywhere near as toxic as the chemo that was given at our local hospital. It’s been a roller coaster for 5 years but he was blessed and was born 3 months premature .

[@ntwyman5079]

@@KayAhern Oh my gosh, Wonderful!!! Thank you for his story. My daughter's boyfriend has HSTCL which is different, but we are hopeful and so happy to read about happy endings. Best wishes to you and yours!!!!!

[@dima1943]

@@KayAhern hey Kay wow thank you for sharing your story glad to hear your dad getting better! my dad has Peripheral T-Cell Lymphoma as well and none of the chemos was working, now they put him on Romidepsin and we are considering Car-t clinical trial or possible allogenic stem cell transplant as a last resort. any thoughts or Ideas about our setuation? thanks Dan

[@KayAhern]

@@dima1943 hi yes car-t is the trial my dad is on at Christie’s which is 2 drugs combined ....one being romidepsin he had illergic reaction to the othe drug but allowed dad to carry on with trial with just the romidepsin - they also are allowing my dad to have this drug free when the trial ends - it’s a Miracle frug drug and I hope it works for you xxx sending lots of luck and well wishes x

[@charmainesmith1362]

Thank you very much.

[@rachelhudson8362]

My Dad has pheriphal t cell Lymphoma

[@streetsdisciple0014]

Hi Rachel. Can I ask what his symptoms were? Thank you.