Waldenström Macroglobulinaemia (WM)

I’m hoping to together anyone who has WM. As it’s a rare condition there aren’t many of us on here.

Hoping to share symptoms, experiences etc.

Sara x

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Hi Sara, hopefully you will get a response from someone with WM, but please do keep sharing your fears, thoughts and feelings anyway, I expect so many of us will relate to them no matter which blood cancer we have.

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Hi I have wm I have had 6 months chemo, and I have had recurring infections ever since and pains in my lower legs and arm.

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Hi Sara
There only seems to be the 3 of us as far as I can tell.

I think we’ve all posted to each other before.
Is there anything in particular you want to share, don’t want to repeat what I’ve already said.
Have to say don’t find this forum the easiest to use!

I was diagnosed in 2015 63 years old.
No symptoms, but breathless, put that down to lack of fitness and age!
Treated in 2017/18 with B& R. IgM then was 47 now 7.3.

Seem to have had more pain in joints and muscles since treatment but the doctors when you mention it always say nothing to do with WM, frustratingly.

I have cold agglutinin disease as well, associated with WM. Which basically means that red blood cells clump together when i get cold, so have to keep warm. Was told this would improve with treatment, but no much much worse. No they are saying that I have Reynauds as well!

Currently doing a Mindfulness course through Maggie’s Centre which is interesting. Hoping it will help with the mental side of living with WM.

Sorry to ramble on, if there’s anything specific you want to know, just say.

I don’t regularly go into this forum rely on the updates email coming through!

Oh I forgot WMUK have their annual forum coming up in July I think it’s the 6th in London. I went last year going again this year, details on their website.

Hope you’re keeping well

Ann

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How is the mindfulness course going @AnnD? I hear great things about Maggie’s Centres, I hope you’ve found them welcoming and supportive.

Great idea to start somewhere for this rarer blood cancer @sajdee - I imagine it can feel lonely at times?

I hope you’re both well and able to enjoy the sunshine!

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Yes it is quite isolating at times I have to say. But while I’m feeling well I try not to think about it and just get on with things. I’m feeling great at the moment thank you. I had my 3 monthly check up this week with great results so feeling on top of the world :hugs:

Sara x

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Hi Sara, Yes, I agree I also find it quite isolating at times and that is where I find this community forum so comforting. I sometimes think it is only people on this site that really understand my fears, what if’s, thoughts and feelings. I am so glad your 3 monthly check up results were great so please enjoy feeling on top of the world. Take care.

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@sajdee that is so good to hear! Long may it continue!

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Hi Dawn
Halfway through the Mindfulness course and finding it challenging but good to be able to share experiences with others.
It’s comforting to know that others are having the same thoughts and difficulties.
Maggie’s are just great so much going on, so supportive, somewhere you can go and feel you can get physical support. Would encourage anyone who has one within reasonable distance to look at their website to see if there is anything for them.

Always good to hear good news Sara.I’m the same really just get on with things and keeping everything normal and making the most of feeling well.
I’m going to ask them if I can go 6 months between checks ups, can’t see that it would make any difference, 3 months seems to come round oh so quickly.

Ann

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Hi Ann, yes, don’t 3 monthly checks come round quickly, I joke that is there is an appointment for every season of the year. But, joking aside, even after 15 yrs, I still get anxious and have a yukky feeling in my stomach before any medical appointments. I also have to write down all my questions, symptoms, fears, thoughts and feelings before appointments as my mind goes blank when I walk in to a medical room. I am fascinated by your Mindfulness course and good for you for facing and embracing the challenge, and as with this community forum, I find there is a comfort in finding others with the same thoughts and feelings. Maggie’s Centres are brilliant, aren’t they. I think it would help many of us to hear more about your Mindfulness course, if you don’t mind.

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Hi Erica
One more week to go then I will try and describe it in more detail.
There are times when I think I have got it and others when I feel I’m missing something.
We had a whole day based on a retreat, after the first half hour or so till the last half hour, we didn’t speak for the rest of the time, including lunch, that was certainly a different experience for everyone.
Maybe I’m trying to think too much about it instead of just letting it happen lol!

Ann

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Dear Ann, hope you are well, have you completed the mindfulness course. I would love to hear if you found it valuable and it would be great for forum members to hear what is involved. Many people with blood cancers seem to suffer from the psychological point of view even if they are not on active treatment ie watch and wait, and the 3 monthly review process. Anything that could improve quality of life is well worth exploring, so when you have the time perhaps you could write a review of the course. Best wishes alfie

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Yes, I agree with @Alfie I would be very interested to hear how you found the whole mindfulness course. I am useless at meditation and silences, my mind writes a shopping list and thinks about what I am cooking for dinner, but I know so many people that have learnt to be able to clear their mind and really find the benefits. However I realise that is a really small part of mindfulness and I find some of the coping strategies are so helpful. take care.

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Well it’s a few weeks now since I completed the course at the Maggie’s centre so will have a go at explaining what’s involved.
It’s for 8 weeks with 1 whole day as a retreat. It combines mindfulness with CBT.
It is confusing at first because you’re not sure where it is all going but you are week by week building on what you are learning.
It’s not really about clearing your mind or navel gazing, as it’s recognised that is impossible, it helps you to accept that but come back to an anchor, to be in the present moment.
It helps you to recognise that thoughts are just that and often building up stories in our heads about what we believe has happened or going to happen.
To accept things as they are.
Give you respite from all those thoughts going round and round, all those worries.
To recognise what needs to be acted upon and what not.

You are given a workbook to follow and yes homework, involving carrying out different meditation practices and ways to halt that endless turmoil. There are recognise websites that have the practices on them. One of them is Bangor University bangor.ac.uk

You are slowly building up different methods to stop and take some time out whenever you need it. Helping you to weave it into your day.
It also incorporates mindful exercise a sort of mixture of yoga and tai chi/qigong, which I have been doing for 9 years and would recommend to anyone.

There is a group discussion after the practices about what we experienced, physically and emotionally, whilst doing the practices.
You don’t have to say anything if you don’t want to.
I found sharing what we felt the most helpful and you know your not the only one with all this stuff going on!
It’s not a magic pill but something to take away and practice.
I have, like we all do lapsed but Maggie’s do a drop in session every month so it will give continued support.

It has helped me to recognise when that whole process of overthinking and worrying is starting and to take action. It doesn’t work every time but then it’s up to me to practice.

It won’t be for everyone and was noticeable that we were a group of women but there were a few men at the drop in session.

If you want to give it a go I would say seek out an 8 week course as this gives you the correct guidance, making sense of it.

The mindfulness utube videos are all ok to use for meditation practices but they don’t build up the whole picture and some of the books really confusing.

Sorry this has been such a long post and I hope I haven’t put anyone off, it really is difficult to explain.
So go give it a go, what can you lose!

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Hi Ann, thanks so much for taking the time to explain the course so fully, very interesting. What helped me is the acceptance that I cannot just empty my mind, but to keep practicing being in the present moment. Also how much it seems to help to share how I am feeling and to take time out, take stock and to keep practicing not overthinking and worrying. I will give it a go, thanks. This has been so useful please do keep posting.

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Dear ann, thank you taking the time to tell us all about the course, it will be a great reference point for forum members who feel they may benefit from it themselves. I admire your perseverance on seeing it though till the end as it’s not an easy thing to face your thoughts and fears.
Best wishes
Alfie

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Erica and Alfie I’ve just come across a website I had saved, I might even have got the link from the Bloodwise site.
It’s abbvie.co.uk. If you go into the site select the Responsibility heading,then Improving outcomes you will find another list pops up to the left.
There is a link to Mindfulness for blood cancer patients.
It has three meditation practices on it.

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Dear Ann, thank you so much for this information it will be a great resource for all forum members. I hope you are feeling ok at the moment, I’ve struggled with the very hot weather but now it’s pouring with rain, it’s one extreme to another ! ! !
Best wishes
Alfie

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Thanks Ann, the site looks really useful, take care.

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