Hi All,
I just wanted to introduce myself. My name is Lee I’m 48 and I was diagnosed with follicular non Hodgkin lymphoma in April. It took 4 months to diagnose me after numerous trips to A&E because of pain in my stomach. the lymph nodes in my retroperitoneal space were found to be swollen, the largest being 4.7X3.5.
I have had 6 out of 8 cycles of O-CVP and been relatively good with side effects from it. I have had 3 delays during treatment. The first was two weeks on cycle one, after the first cycle you then go back for target therapy however that was delayed because of low platelets. So after my platelets didn’t improve the DR decided to move straight in to cycle 2. I then had a delay on cycle 5 by 6 days again because of low platelets.
I was never told of my stage as never had a PET scan but from my symptoms I think it’s either 3/4B. When I first met my hematology DR he didn’t even state my stage I told him and he didn’t disagree. Although it’s not good to be told you have cancer I do take comfort in being told it’s treatable and I hope I get to live a long life even if it’s with cancer.
I also have a fantastic wife and family who are very supporting.
Hi Lee LeeJ0bba25 and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context about me. I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. for much longer.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well……. But I am coming up to 25 years out, 10 years since my last treatment, I turn 70 in a few months and I am still living a great life…… this can be done.
Always around to chat.
