Hi, I am new to this forum. I just wanted to know anyone who has this form of cancer and how they are coping.
My dad has been diagnosed today after getting a very low red blood count. It was picked up in a routine blood test when he was getting a health check. He is 84 and has suffered fatigue and brain fog. He suffers from the cold, has tingling in his hands and pins in needles in his hands and feet. He is active and chops wood, goes fishing, plays bowls, golf and goes hiking.
He had a bone marrow biopsy and MRI(this was normal). The bone marrow biopsy owed a low grade B cell lymphoprodiferative cancer suggestive of WM. The specialist said he doesn’t require treatment yet but in 3 months he needs to revisit them for a blood test to check his red blood cell count.
He may need a blood transfusion. They were planning on going to South America on a 10 day tour next year and the doctor said this is fine. Am worried about infections and the plane trip but dad wants to desperately go.
I am worried about next steps for him and wondered if anyone else experienced this WM and can shed some light on it?
Hi Dennis 4b31442 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your dad.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Waldenström’s macroglobulinaemia but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million - about the same rareness as your dad’s WM) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) …….
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (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.
Waldenström’s macroglobulinaemia fits into the same group of Lymphomas as my first type of NHL fit into in that it’s a slow growing Low-grade non-Hodgkin lymphoma
A lot of people who are diagnosed with low-grade NHLs like his WM and indeed my CTCL will most likely have had it for a period of time without knowing…… and a lot of people will often be put on Active Monitoring (Watch and Wait) and I know many folks with WM who have went years before treatment was required….. some never have full time on treatments…… a few I know are in their 80s.
I was basically on Active Monitoring for 14 years before I needed full on treatments.
On the whole these types of slow-growing NHLs are very treatable if or when required.
All these letters WM - CTCL - PTCL…… is a short way of identifying 1 or a number of the 60 types and sub-types of Lymphoma…… yes very confusing.
As for going on holiday (South Africa sounds amazing)….. although a doctor has said he is fine to go….. getting travel insurance may unfortunately be a challenge :(
Always around to chat or answer questions as best as I can ((hugs))
