Hi
At the start of this week I was diagnosed with low grade Waldenstrom Macroglobulinemia. So I am now doing watch and wait as no treatment currently required.
The Waldenstrom’s was only discovered incidentally due to the fact for the last 2 years I have been fighting stage 4 melanoma. I receive immunotherapy for this monthly and at the moment it is stable and there is no further progression.
My lymph nodes had been enlarging over the course of this year and my melanoma team advised after a PET scan that there was moderate activity in the lymph nodes in my groin. Based on that I opted for a lymph node dissection to have them tested as they thought it was either melanoma or that it could be a side effect of the immunotherapy.
i then received the news they were negative for melanoma so assumed that it was treatment related but thankfully I had a very thorough surgeon who felt there was something else going on and who tested for lymphoma and I now have the Waldenstrom’s diagnosis.
i had my first appointment with the haematologist on Monday and hearing the word ‘incurable’ is never easy! I have been through a lot in the last couple of years and now have this and I’m only 43.
Does anyone have any experience of Waldenstrom’s as I k ow it’s pretty rare? How long on wait and watch before treatment was needed (and I know everyone is different)? I’m just trying to get a feel for what to potentially expect.
thanks
Hi Cambers 79 and a warm welcome tover o 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 don’t have Waldenström’s macroglobulinaemia (it's some name) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually (Mycosis Fungodes..... another name) reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from WM I do appreciate the challenges of this journey rather well.
Sorry to hear about your journey with Melanoma, but great that things are stable and no further planned treatment...... You are now going to find out that living with an incurable blood cancer is a rather different world from Melanoma.
When I was diagnosed my consultant said that I had to think that I had a lifelong health condition that 'may' need treatment from time to time and unlike some other chronic lifelong health conditions, there are lots of treatment available if and when required..... and the prognosis is good.
It's interesting that your WM was found by accident, this often happens and you may have been living with it for a while and had no real idea..... again this can be rather normal. Many people can be living with types of Low-grade non-Hodgkin lymphoma and have no idea.
My type of NHL is also rare with only about 7 in a million in the UK. I was having skin treatments like I had very bad Psoriasis but it actually took 14 years before I needed full on treatment (you can see my story through the link at the bottom of my post)
Active Monitoring (Watch and Wait) is often the initial approach for many low grade NHLs and I talk regularly with a few men who have only had minimal treatment over their 10 - 20 years with their WM...... although others do have regular treatments - there is no one size fits all when it comes to Lymphoma.
Let's look for some of the WM group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
You can also put WM or Waldenström’s Macroglobulinaemia into the search tool 
near the top, select 'anywhere' and this will bring up all the older posts and as always you can hit reply and see if the folks are still using the site.
All the links above are taken from the great Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Support Platforms both for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey. The Scottish group I run has a few men in it with WM and they are doing great.
Lymphoma Action 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 help more, to answer questions or just to chat
Hi
Thanks for all the information you provided it’s very helpful!
I am based in Scotland too 
