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 ♀️

Hi I'm still trying to find myself way round this site,not being technically minded,just been diagnosed after many tests scans with what I was told was 4are also, wm lymphoma,I am a male of 70 never looked or acted older than myself years,al2ays active,sl8ght blood in myself pee 9 weeks ago,throughly investigated they found this lymphoma,round myself kidneys although the kidneys no affected,a scan revealed other small nodules on chest and abdomen,no watch and wait doc said 6 rounds of chemo starting in 5 days,I was shocked and worried,I have not had any symptons at all,the blood in pee was not shown to have a cause,so here I am worried out of my comfort zone,worr8ed about side effects of chemo which is to be rituximab andbendamustine.thanks I've got that off my chest hope you are all keeping well,my very best wishes to all going through this.

Hi I am a male in my late 60s just being diagnosed with wm.shocked was my response as no symptons,they were looking for something else and discover3d my lymphoma through a scan.I have to have chemo in 6 rounds starting next week Bendamustine and Rituximab,I'm more concerned with side effects as 8 look after my wife who is disabled.thanks for listening

Hi,

Sorry to hear about your diagnosis. I was diagnosed with WM in 2024, and like you, no symptoms (other than low iron levels and I seemed to catch every cold and bug going which was unlike me). I was also in my late 60s then. I had my 6 rounds of Bendustamine and Rituximab starting in August 2024 and then moved on to 'maintenance' which involves Rituximab once every 8 weeks, I'm due to finish that in December.

As to the chemo itself, it didn't really cause my any problems apart from a trip to A&E after the first round because I developed a slight fever - they kept me in for a few days.  I had another fever after the third round, again, A&E and I was in for a couple of days. I didn't suffer from nausea and I kept all my hair!  Oh and the medication they give you before the chemo itself - anti nausea stuff I think, gives you constipation :-(

I have my treatments on a Thursday and as I'm retired now I just kept the following Friday and weekend fairly quiet.

In general I feel fine, sometimes I don't have a vast amount of energy but then I'm getting old, so not sure how much energy is 'normal'!

I hope your chemo goes well, and I would say try not to worry.

Hi Leothelion  and welcome to the Community but sorry to hear about your Waldenström’s macroglobulinaemia diagnosis.

You may want to have a look at our dedicated General Non Hodgkin's Lymphoma support group where there are a few folks living with WM.

If you are in the UK you may want to check out…… Lymphoma Action the UKs main Lymphoma charity.

The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

You may want to widen your support and information base by checking out their various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 6700 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Buddy Service where you can be linked up with someone who has walked the same support/treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.