Hi everyone,
my dad was diagnosed with WM last week and is starting chemo (DRC) in a couple of weeks.
understandably we're all still processing as a family and I want to do whatever I can do support him.
wondered whether anyone has any experience to share of this rather rare lymphoma or their experience of DRC as a treatment... and super super grateful for any nice tips/warm words I can share with him.
thanks! Xx
Hi Luciesarah and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your dad’s WM diagnosis….. this will have come as a shock.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Waldenström’s macroglobulinaemia…… it's some name so everyone uses WM for short…… ;)
I was diagnosed way back in 1999 at 43 with another rare, incurable but treatable type of Low Grade NHL (Mycosis Fungodes..... another name) eventually 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.
His WM is a type of Low-grade non-Hodgkin lymphoma. 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.
There are a few members in the group, some very new so lets look for them 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.
I had significant amounts of chemo having over 750hrs (I also had 45 radiotherapy sessions and 2 Stem Cell Transplants over the 2 years late 2023 to late 2015) and on the whole I did ok.
You may find this link helpful as it highlights some collective thought about what people found helpful when going through treatment Top Tips for the day of your Chemotherapy
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 for family and friends ...... I highly recommend these groups as there is nothing better than talking with other who have walked the support journey.
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 Luciesarah
I'm Andrea, and my husband Peter was diagnosed with WM back in February of this year. He is 66 and we live in Brittany, so the health system here is a bit different!
Once diagnosed, our French specialists have been superb. He had all the usual tests, bone marrow aspiration, then Biopsy, then full body CT scan etc. One difference here maybe, is results of things like scans are given to you normally immediately, like within 24 hours. As you probably now know, a lot of stress is caused by awaiting test results. He was put onto a 6 cycle, 21 day interval chemo treatment called BR, (Bendamustine and Rituximab). He didn't tolerate this well, and they stopped it after 3 cycles. Long story, and two different regimes later, and now he has been considered well enough to be transferred to "watch and wait", with monthly home nurse visits to do complete blood tests, and any problems are addressed usually with appropriate drugs administered here at home. So we have a whole fridge shelf full of drugs!!
One thing our specialist told us at the beginning of this was it is an indolent lymphoma, meaning slow progression often with little or no symptoms. Looking back, I think he's had it a while, but we just thought he was anaemic.
Anyway, sorry for long post, but the prognosis for this rare type of lymphoma we have been told is good, and indeed the specialist said if he had to have one, he'd choose this one! So stay positive, and best tip, as far as possible just carry on as normal, but adjust whole family outings etc to his pace and ability, encourage him to eat well, and remember, due to its rarity, this is a type of lymphoma where research is continuing, and drug trial programmes are available if the "normal" regimes are not effective! Always around for a chat!
Love
Andrea and Peter.x
Hi Andrea & Peter,
Thank you so much for taking the time to write this! 
️ I've shared with dad and think it really helps to hear from others in a similar boat.
Very glad to hear that Peter's treatment has been successful and that he is now on watch and wait.
It's useful to hear about your experiences too as yes, I've seen how few people are diagnosed with WM so seems lots still to learn!
At the mo, focusing on finding tips for undergoing the chemo - sounds like his first regimen will be similar to the first one Peter tried.
Re: carrying on as normal, very sensible tip! He and my mum are trying to enjoy this period pre chemo as much as possible by doing nice things together. I'd be really interested to know how you both managed and stayed positive during treatment, if you have any advice to share on that.
Thank you again & hope you're both doing well! Xx
Hi Luciesarah I am so glad that you and your dad is finding the community helpful.
As good as this platform is you may also benign from ‘talking’ with others supporting family so do consider connecting in with the Lymphoma Action regular Support Platforms for family and friends ...... I highly recommend these groups as there is nothing better than talking with other who have walked the support journey.
