Waldenstrom macroglobulinemia

Hi Eddie

Very good to know that your mother is responding well and that the side effects are at least tolerable.

Has your mother being losing weight? I know I am now eating more just to maintain my weight. Apparently with WM it's very easy to lose weight but very difficult to put it on.

Hi fellow WM Clan member.

Weight is an interesting issue and one I'm conscious of. How much is body mass, how much is hydration and what is healthy?

71 year old WM on Ibrutinib and with T2 Diabetes with toxic flushing and kidney protection fluid intact is important. Repeated UTI's adds to the through put. As for food intake I monitor in line with varied advice but not to any obsession.

During 10 years of MGUS weight was well controlled as was the T2D but then the Paraprotein shot up and I went down. On treatment my weight went back up. Stuff BMI my QoL has improved and I've risk assessed my priorities within my varied comorbidities.

An interesting step did occur as a result of a severe skin outbreak resulting in the administration of Prednisolone (Steroid). Skin greatly improved and I couldn't have been more active. Lethargy, skin and QoL improved but on a limited timescale as Steroids have their downsides. I had Hodgkin in 1984 and Steroid was part of the cocktail then. Might be worth at least raising the subject with your medic team.

Hope things improve for you and your loved one. 40 years remission for Hodgkin and in maintained remission under gene therapy. Keep positive

Hi, I also have WM and am still processing this, albeit have decided that I need to understand this before I go ahead with chemo. How are you doing now, as it was 9 months ago you posted?

Hi All, managed to get back on forum. Been off for a few weeks as had problems in my health, needed hip replacement. Nothing to do with WM. Fortunately for me I have a teriffic Drs practice and through them and the Ortho Consultant I am under, had surgery on 07/11/23, which has been a success. No more pain. 

Was off Zanubrutinib, for 1 wk before & 1 wk after surgery, This treatment is really working for me and my Para Proteins have gone down considerably. Next Consult on 29/11/23. Hopefully good.

Hi Eddie, how is your Mother doing? Well, I hope.

And Coop, how is your treatment fairing now? Going well?

And everyone else, hope all well.

Take care Gabbie

Hi Clan member!

Good to hear from you. So sorry you have been having so many health issues. Please keep positive as well! x

Hi Larch

Yes, it also took me time to process. Have you tried this WM website? I have found it pretty good.

https://www.wmuk.org.uk/

I am fortunate enough to still be on Watch and Wait. I am now 70, but still doing some online teaching and voluntary work. I am also fortunate enough to live in a Yorkshire coastal town so can go out for a sea walk when worries start. How about yourself?

Hi Gabbie

Really glad to know that your hip replacement went well and there is no more pain. Also that your para proteins have gone down. Take care. x

Hi Gabbie, and fellow travellers, 

• Start my last of six RDC treatments nxt Thursday, 30th. Ive tolerated it better than forecast, or expected. The 4th round added Filgrastim injections, 1 per day, for five days, after the five days of six pills per day. The jabs self administered! Such fun. Each round has effectively been 11 day duration. Found the Anti Bacterial & Viral pills upset the stomach so I've dropped them as I've chosen isolation over urgently seeking toilet facilities at short notice!! Will miss the staff on the Chemo Unit, such a seemingly happy, chatty group. I've no idea of my current Hg, Paraprotein, Platelet levels but feel they've improved. I'll update when the "scores are in" and I know if it's more watch n wait, or treatments for 2024. I wish you all the best for the rest of this year and urge a Positive Mental Approach to this "no fault" condition

Hi

How is everyone? Hope you are having a positive start to 2024.

Welcome to 2024. Hope everyone well and managing to cope with ongoing treatment Well on the road to recovery since having op and walking without aids and totally pain free. No problems with Zanubrutinib meds at all, seeing Consult on 24th. Coop I really hope you are doing better, feel for you having this traumatic time with your treatment. Alacoque, hope you well and Eddie, how is your Mother? Hopefully doing well. Take care.