I was an oncology nurse for 7 years during my 20 years in the NHS but have to admit, despite that, I'm rusty as I spent the majority of my career either in emergency medicine (nurse version of a GP I guess but with better stitching and venepuncture skills hee hee) and mental health.
I've been medically retired for a decade now being primary medicine 'treated' for various ailments that, on their own could be any number of simple ailments.
My new GP agrees with me after years of banging my head against several GPs' walls, following the "I'm a doctor, you're ONLY a nurse and I know better" response that, as nothing ever truly clears up, returning worse every time, that it's possible I have NHL, and he, as a former oncology registrar, believes it to be Waldenstrom's.
Can anybody simply and clearly explain to me difference between that and 'normal' Non Hodgkin's please?
I have done the research I can, awaiting a bone marrow biopsy if my leuk/lymphocytes remain as high as they are currently, but I'm stressed to high heaven right now.
Please don't hold back, just say what you know.
Many thanks in advance
W Barry
Hi Barry Barrythebishop and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 with a rather rare, incurable but treatable type of skin Cutaneous T-Cell NHL (Stage 4a) so although my Lymphoma ‘type’ is different from Waldenstrom's I do appreciate the challenges of this journey rather well.
First I will say that it needs a good clear biopsy and most likely a PET or CT scan to find the truth but even then, in my case it took a year, 6 biopsies and a few CTs for me to get my diagnosis. Without following the diagnosis process latching onto one specific type of Lymphoma would be like throwing a dart at a dart board from 5 meters away and trying to hit the bull.
As you may know Lymphoma is a very complicated condition with over 60 types and subtypes in the Lymphoma family.
The NHL line has two main types with one growing slowly (low-grade lymphomas) and the others growing at a faster rate (high-grade lymphomas).
Lymphoplasmacytic lymphoma (Waldenström’s macroglobulinaemia) falls into the Low-Grade slow growing type.
Most Low Grade NHLs then fall into one of two categories….. B-Cell or T-Cell…… Waldenstrom's is a B-Cell but even then there are other factors within Waldenstrom's that can further separate these again into a further clarification depending on specific cell types.
My type of CTCL like Waldenstrom's is rather rare with my tumour growths presenting ‘on’ my skin, not inside me. It’s not skin cancer, it’s an NHL that presents on the skin.
I am just a retired University Lecturer who was teaching construction - this I can understand but even after 23 years living and being treated for my NHL I am still learning.
So I can’t give you a clear explanation as this is very scientific, the main thing I will always say is that most types of NHLs be it low grade or high grade, b-cell or t-cell are on the whole very treatable.….. but some types require a demanding treatment journey (hit my community name to see my story)
All the BOLD links above are from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos.
I regularly talk with a number of folks with Waldenstrom's and some have had some treatment and are living a good life well into a mature age.
Always around to chat.
