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Hi partner diagnosed beginning July after lump appeared on lip during a nasty bout of covid. See profile for details Constantly told by various drs its a really rare type and probably end up seeing specialist! ct scan & bloods done Told this week by...
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 there we just found out on Thursday that my partner (we are both 30) has been diagnosed with cutaneous T cell lymphoma. We are still very early into this journey and don’t know much about what’s happening or going to happen. We are both an absolute...
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 Mike and thanks. ive been treated for more years than I care to remember for psoriasis and eczema, without any success. Things changed over the last year or so and raised lumps appeared which have become more evident, painful, harder to hide, biopsies...
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...
My partner has recently been diagnosed with this rare cancer, looking for others who have had the same diagnosis to discuss treatment plans etc with
Hello. My husband is going through tests at the moment as MF is suspected. His dermatologist sent him for an X Ray of lungs and chest. Funny enough my husband has had a weird annoying cough for the past year which he always has put it down to indigestion...
Hello everyone. I am very grateful to find this space especially in moments like this where you feel incredibly lost and confused. My husband ( he’s only 42) developed a few marks on his left leg in February 2023 which were red a first, then turned...
