Woldenstrom Macroglobulinemia (a type of Non Hodgkin's lymphoma)

Hi Sapper886 and welcome to our little corner of the community but always sorry to see folks finding us.

I am Mike and I help out around our various Lymphoma groups. I don’t have Waldenström’s macroglobulinaemia (WM) but I was diagnosed way back in 1999 at 43 with a different type of low-grade (slow-growing) non-Hodgkin lymphoma....... like your WM my type is also very rare, incurable but treatable eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

There are a few members with WM so let's see if they are looking in. you can use the search  tool near the top, put in WM or  Waldenström’s macroglobulinaemia into the tool, hit ‘Anywhere’ and this will bring up the older posts and as always you can hit reply and see if the members are still using the site.

Have you been on Active Monitoring (Watch and Wait) or are you going straight to treatment?…… do tell us more about what you have been told, where your hospital is and as always you can put up your questions and we will try and answer as best as we can.

All the Bold link above are taken from the Lymphoma Action website. Lymphoma Action is the UK's only Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey. We do have a few folks in the Support Group I attend who have WM.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to chat.

Thank you for your support. I'm 68, male and until now very active, gym, swim etc. I also had asthma diagnosed a year ago, I had a flu jab last week followed by what I think is a chest infection. It's left me wheezing and my inhaler Symbicort 200 isn't reducing or eliminating the wheezing. Does WM leave us immunosuppressed? I'm wondering whether to try to see my GP (,almost impossible) to ask for antibiotics? It took a year to diagnose my asthma and find an effective medication, I'd hate to think the inhaler was no longer working for me. Any suggestions please? 

Hi Sapper886 any blood cancer not just your WM will reduce your immune system’s effectiveness to fight infections so you can’t leave this, you do need to talk with your GP as you may well need antibiotics.

I also have two inhalers that are used to control my asthma of many years but they won’t make much difference when a chest infection comes along.

Hi dapper886 

my name is simon haven’t been on here for a while I was diagnosed with WM in 2017 at 49 years old my Igm was around 20 and was classed as stage 4 it went up to Igm 33 and I did six months of retuximab and bendamustine imuno therapy and chemotherapy I have been in remission now for 5 years but once you have this you may always be imuno compromised so will have to be careful the treatments are good and there’s always hope make sure you ask any questions you have to your consultant there’s no such thing as a stupid question when it comes to this take care and keep safe

Thank you Simon123. I'm 68, fit, was a competitive runner for years and still gym,swim and sauna two or three times a week. Getting diagnosed took time, I'm in the north east of England and on watch and wait. I had said I would not have chemo, but after reading your story and others I have probably changed my mind. Frank