Waldenstrom’s Macroglobulinaemia Treatment

Hi DaveA and 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 back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I understand the challenges of the journey well.

There are a few folks have posted in the past with WM so let’s look for them to be looking in.

There are a few lads with WM in our Scottish Lymphoma Action Lymphoma Online Support Group.

Some post treatment Side Effects of Treatments can be challenging and PM is one. It took a good two years for my hands to clear up. At my worst au could not use a knife to cut food. My Specialist cancer Nurse told my to get two stress balls and work my hands to get the blood flowing and get my muscles working and for me it worked.

Cheers Mike,

Great to get another perspective on this. Good to hear that your neuropathy eased in time; I guess I’m only recently out of treatment, so some patience will be required.

Prior to the diagnosis I thought that I was suffering from long Covid (I had mild Covid in March 2020), so, for 14 months I kept trying to push through it when running & weight training. Pretty dumb! But in May last year I couldn’t walk up a small incline without getting breathless, so went to the docs & the rest is history. 

Since finishing treatment in January, my fitness levels are way better than pre March 2020; the PN being the only real concern. Still on antivirals as effects of Rituximab on my immune system could last a while, but, overall, not doing too badly. 

Be interesting to hear the experiences of other WM people  

I’m a guitarist, so the hands get a regular workout. 

All the best,

Dave. 

Hi Dave, your diagnosis story is not that unusual especially with these rare types of NHL. Some folks can be living ‘with’ their condition for years and not know it.

I also play guitar but during my main treatment and post treatment recovery (see my profile) I could not play for a few years but time heals.

You could do a subject search into the search tool near the top. Try putting in Waldenstrom’s Macroglobulinaemia into the tool then select ‘Anywhere’ and this will bring up all the older post and as always you can hit reply and see if anyone is still looking in.

All the very best.

Cheers Mike,

That’s really useful. I’ll do as you suggest. 

All the very best,

Dave.