Waldenstrom’s macroglobulinemia (WM)

Hi Larch and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.

I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but can I suggest you join our General Non Hodgkin's Lymphoma support group. This group is a safe places to talk to others with a similar diagnosis including WM, treatment experience, to ask questions and get support.

To join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title.

I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

Thank you for your reply. I am curious to know how many are on this wonderful site, who have been diagnosed with WM, as you stated there are (unbeknown to me) over 60 types and sub types of Lymphoma. I am keen to touch base with anyone who has WM, whilst all cancer is a huge issue for anyone, given that WM is ‘rare’ I have also had Bowel Cancer and have Prostate Cancer. Albeit at 78 and male I am still keen to understand what I can about WM.

Hi again Larch I don’t know exactly how many people on the Community have WM but there have been a good number of folks with WM have joined and posted in the General Non Hodgkin's Lymphoma support group.

I know the felling living with a rare type of Lymphoma as my type is 7 in a million rare.

So do join the group, put up a post and introduce yourself as this will help you connect with others…….. most people don’t look in the New to Community section as it’s like our reception desk where folks can be directed in to the best part of the community for their type of cancer.

I will keep an eye open for you.

Hi Larch,

Yes, I was diagnosed with WM back in March. I had stage 3 B. I've finished chemotherapy and immunotherapy, and am now considered to be in remission.

I'm still struggling with fatigue, and need to build my stamina up, but no longer have nausea because I have stopped all the meds now.

My spleen is back to normal size, and I'll only need 3 monthly blood tests/consultant appointments. 

It's not been easy, with emergency hospital visits along the way, but I'm relieved to have come through treatment, more or less intact.

I hope things are going well for you.

Take care,

Dawn (NanNan).

Hi, I realise that this is quite an old post, but I have been diagnosed with WM. I haven’t started treatment yet, this is likely to be chemo. 
i don’t have any symptoms, am currently wondering why I should put myself through chemo ♀️