Good evening, My brother has recently been diagnosed with NK TCell Non Hodgkins Lymphoma Nasal Type. It has been very distressing for him and our family. The doctors have said it is very rare which has made us feel very anxious. He has stage 4 but is...
I have just found out about this community forum. My mum has T-Cell Lymphoma stage 3 - we are waiting for treatment to start. I am trying to keep my mum in the best spirits possible but am struggling to find ways and unsure what to do to help her. I don...
My daughter aged 22 had a diagnosis last year October 2023 with a rare type of cancer called Anaplastic large cell positive non-hodgkins lymphoma at stage 3. She was diagnosed late because the GP dismissed her for a year and she ended up unable to walk...
hi all My mum got diagnosed with the above and started treatment at Guys Hospital at the end of March. The treatment is called photophorosis. After the first treatment she came home tired but when she went for the second one she developed sepsis...
Hi everyone, We’ve launched our annual survey for 2024! We want to hear what you think about the Online Community. The survey should take around 15 minutes to complete. The survey is anonymous. Please complete our survey here. This survey is designed...
The treatment of my Sézary Syndrome started with weekly dosage of Methotrexate, advanced to daily dosage of Chlorambucil and will shortly be an IV treatment with Brentuximab. If your treatment has followed a similar line I would very much like to hear...
I have the above cancer and been having Pola-br chemotherapy. I have had nausea symptoms throughout which has wiped out my appetite and I have lost weight. Does anyone have a way of counteracting this nausea feeling? I can cope with most of the other...
Hi all, My 11yo was diagnosed with T-Cell Lymphoblastic Lymphoma at the start of February. He's struggled on and off with treatment and infections but mostly with sickness and loss of appetite. He wakes up feeling sick every day and it's a fight to...
Hi all, My husband has Mycosis Fungoides and has had for a number of years. He has a particularly large patch on his leg which is seeping. It is being treated using a chemo cream and we are trying to leave it as open as possible to the air, but he does...
