Hello

Hi Pauline58 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Waldenström’s macroglobulinaemia….. thankfully we can use WM for short……  but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-Grade NHL then in late 2923 a more aggressive tyoe of NHL came along with me now reaching Stage 4a so although my Lymphoma / Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

Sorry to hear about your fatigue. Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery can take.

There are a few members with WM so let’s see them pick up on your post.

I talked with a good number of people over the years with WM….. and yes they have had treatment at various times but they are still getting on with life.

Hi Pauline

My husband Peter was diagnosed with Waldenströms in February 2023. We live in France, where the health system is different, but treatments, although likely to vary slightly, are usually the same. Peter had 7 doses of Bendamustine, and at the same time, had 6 of Rituximab. He is now on a watch and wait regime, which involves a monthly blood test, after which his results are examined to see if any treatments are needed. He has neutropenia, a condition where very low count neutrophiles cause leukocytes to be very low, so he is given a three day course of Filgrastim to boost the Leucocytes and artificially "repair" his severely weakened natural immunity. He suffered with various set backs, contracting Covid being one of them, but he's been on watch and wait since July last year and the doctors are pleased with his progress. Oh the fatigue is the absolute pits, he hates not being able to do stuff, and the frustration is hard to deal with. He has good days where he'll cut some grass and walk our cats round our field, but he says he just feels "old and worn out" and gets depressed. Even though we know the cause, the permanent sometimes debilitating fatigue is bothersome. He has had to accept a slower pace of life, and although he rebelled at first, he just got Ill again, and had to have more treatment. If there is a hobby you enjoy, crafting, light gardening short walks, it can help take your mind off the "down" bits. Pete's 67, and the doctors here have said he should have a "normal" life expectancy, but relapses are always a possibility. However, if treatments aren't suiting you, there are alternative regimes, and new drugs and therapies, including field trials are available, as is a bone marrow transplant if all else fails. Our French oncologist, when he gave Peter the results of the tests and told him what he had, said "If I ave to ave a blood cancer, I would choose zis one, best chance of good outcome" which was immensely gratifying and cheered him up! Good luck with your journey, I'm happy to chat! Andrea and Peter Wild.xx

Hi. Thank you for your message, it helps to know I am not alone. I have been suffering with neuropathy for some years and after a lumbar puncture was advised I could develop cancer, what they didn’t explain was the neuropathy could be linked, so until I was struggling walking I never went back.  The first thing I was asked was why had I not sent to a haematologist. My anti mag count was high and I was told it would be best if I had cancer so I could have all the treatment, as it was it is just in my bone marrow and so far not spread. I am having 6 courses of Rituximab and chemo tablets.  Thank you for telling me about Peter, I was beginning to think I was going crazy, I have never been one to express my emotions and I am not telling my family how I am feeling.  When they ask, I say. I am doing well even though I am screaming inside.  Knowing I am not alone I will try to explain to them how I am.  Give my regards to Peter and I will try to accept I have to take each day as it comes. Pauline x

Opps replied to Highlander instead of BretonBelle.  Pleased to see both messages. Hope you can both see my reply, not good at this sort of thing.

Hi Pauline

Well that's excellent news, that it is just in your bone marrow. Our French specialist, who is an oncologist and with specialism in blood "cancers", says the targeted therapies are kinder than the original chemo drugs, and also new treatments are appearing all the time. With regard to telling family, I prefer to call it "sharing" with family, most will want to help, and only you can know how they will handle it. But it does help if folk around you know what you are going through, although for some of us, talking about it to "strangers" who are in the same boat can be easier.

Always here to chat, love from Andrea and Peter.xx