WM - hello I am new

Hi  And welcome to this corner of the Community.

We have had a number of folks come through the Community with WM Waldenström’s macroglobulinaemia so let’s see if they are still looking in.

I have a different type of NHL and apart from a small rash never did have any symptoms in all my 21 years so again let’s look for others to help out but talking with others in the Community I understand that the night sweats and shivers will reduce once treatment starts.

Do you know what treatment his is going to have?

You can also use the search tool near the top and search WM or Waldenström’s Macroglobulinamia and have a look at old posts.

You may also want to checkout Lymphoma Action a small UK Lymphoma Charity that has lots of information and run regular online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

Always around to help out as best as I can.

Hi Mike. OK thank you. I'm just working out where stuff is in the site/group. Thanks for the reply and for saying  about your own circs. No we don't know what the treatment will be and sadly the last appointment appointment appeared to be a bit rushed,  so a bit in the dark, but that's understandable with the covid situation. I assume the bad sweats/ shivers and the other stuff is indicating treatment is needed now, but not bad going ater 10 years or so I suppose. I am relaying all this back to him as he is too tired to be doing this. It does make it less scary just talking about it.thanks.

Hello Grey Cat, I was diagnosed 2014 and was also on W &W for a shortish time before having Chemo, I found the chemo gave me the shakes but after 24/48 hours this went. Since my chemotherapy Have been well and able to do all I used to do - only reduced by age (75 now). If my experience is anything to go by, there is nothing to fear although I quite understand the shock of the diagnosis (a few tears in my case). As someone said "You die with it rather than of it". Best wishes Phil

Hi Phil, thanks. It's lovely hearing that you could do the things you used to do, that's brilliant :-) it is very scary the thought of it ( the chemo) but I have just read out to him what you have said. There's been tears, yes, no getting away from that. Thank you so much for talking.

I have requested to join the Facebook lymphoma support group, thanks.

Hi Grey cat

i was diagnosed with WM in 2015, no obvious symptoms, it was found by having a blood test.

WM affects everyone so differently so difficult to compare symptoms. I've been very lucky as WM hasn't really impacted on my life.

I was on W&W for 18 months before I had treatment with Bendamustine & Retuximab. Treatment was initiated because my IgM paraprotein had risen to 49 and my bone marrow had 60% infiltration of disease.They tend not to treat on numbers though but symptoms.

I am now 3 years, almost, post treatment and doing well. My IgM paraprotein is currently 4.2. It's very rare to get a full remission with WM.

I'm not sure if I can see all the posts on here relating to your enquiry so apologise if I’m repeating information already given.

if you haven't already be advised to seek out the WMUK  and the IWMF webpages please do so, so much invaluable information on there. WMUK also have a Facebook page where you can get a lot of support from WMers who have already been there.

You are having to go through all this at a very difficult time and it sounds as if your husband has really gone through it. You should be getting support from his Specialist Nurse. It's the waiting for results and all the uncertainty, that really gets you.
You don't say where you are or which hospital you are under?

I wish you both well at his next appointment, just get a a much information as possible.

Hi Grey Cat

i have replied before but can't see the post so apologise if you get it twice!

WM is so different for everyone so difficult to compare symptoms. Mine was discovered via a blood test, no obvious symptoms. I've been lucky as WM hasn't really impacted on my life.

I was diagnosed with WM in 2015 and had treatment 18 months later. Treatment was initiated as my paraprotein had risen to 49 and I had 60% disease in my bone marrow. They tend to treat symptoms though not numbers.

I am 3 years, almost, post treatment and doing well. I had Bendamustine and Retuximab which resulted in my IgM paraprotein dropping eventually to 4.2. It's very rare to get a full remission with WM. Back on Active Monitoring (W&W).

If you haven't already found the WMUK & IWMF webpages please visit them so much information on there. WMUK also has a Facebook page with support from other WMers who have already been there.

You should be getting support from his Clinical Specialist nurse. You don't say where you are or which hospital your husband is being treated at?

You have come to this point at such a difficult time. It's the waiting for decisions and results which really gets to you!

I wish you both all the best for his next appointment.

Thanks.  I have just looked up the FB page and asked to join. We are in Nottingham.  No specialist nurse though!  I think covid has probably had an impact on everything currently though. It's encouraging though what you say about your own treatment.  My husband seems to have significantly worsened just recently after all those years on w&w, so bit of a shock. And difficult because they aren't letting 2 people into the appointments. We have very little information to be going on about treatment that may lie ahead,  this is the (frightening) problem. Thanks so much for your response it is much appreciated. 

Ask them about having a Specialist nurse, you should at least have been given a contact number for queries. I'm in London so don't know what WM specialists are in or near Nottingham but someone on the Facebook page will know.  Although I only had a short time before treatment I was still shocked when they said I needed it. Had convinced  myself that it would be years before I needed anything, so can understand after going for so long what an impact it has had on you both. I believe you can go into appointments, I'm sure I’ve seen it somewhere that you can?

It's quite normal to be freaked out by the thought of treatment, you never really know what it's going to be like until you have it. In my case the thought was far worse than the actual event. Yes there were bumps along the way but I came through intact! Treatment experiences like WM are different for everyone so don't get too caught up in what it's been like for others.

Take care

Thanks  very much, it is scary, and you are right- we must  try and not get freaked out! See what the fb page info is. It is indeed a shock,  never thought it was going to happen.  Right now important to stay calm. Your replies are great, v reassuring thank you. You take care too and glad you are doing ok.