New diagnosis: WM Waldenstrom macroglobulinemia

Recent diagnosis
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Well here I am, 52m, diagnosed with Waldenström macroglobulinaemia (WM) 18/11/24, bit mind numbing the whole experience. TAD LONG POST…

So, I am an Engineer, but not on the “Tools” as such, more office based, that was my excuse why I couldn’t keep up with my father-in-law, with outside jobs, I just though I was out of shape!!. So after a yearly check up at work may 2024, (Occ health) were my lung capacity was tested, 70 year old lungs, ok, I know I’m out of shape!!
the pivotal moment was, outside making kindling for the fire, with the Mrs, started to get extremely dizzy/out of breath to the point were I had to sit down before I fainted, Mrs got upset and demanded I went to the GP, GP asked whether I was a ex smoker (which I am 6 years ago) courtesy of smoking you have asthma, to inhaler, reactor and preventer, reactor was ready Monday, took that no issues, Preventer wasn’t ready till Wednesday, picked that up after work Wednesday, took as prescribed, Thursday Morning pretty much blind in my left eye (mainly central vision) after discounting cataract/glaucoma (specsavers) immediate referral to doctors, they advised AE, then got a referral to the eye specialist within 24 hrs, blood taken, I’m anaemic, impossible, I eat healthy, now right eye injections (joyful experience) 40 week wait for haematology, went back to the GP, with a concern about the 40 week wait, blood test on the Wednesday, call on the Thursday by the GP, Myeloma, holy sh*t, the C word, saw the consultant, wasn’t 100% sure it was Myeloma, so the tsunami of blood test, bone marrow (another joyful experience) I have finally got a definitive diagnosis it is Waldenström macroglobulinaemia (WM), I’m still at work, well only just my Chemo starts 9th/10th Dec, 6 courses, not 100% sue what that actually means, once a week or will it be weekly?

so the RIDE will get even more “Interesting” very soon

Paul

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Hi @paul4 welcome to our forum family, although I can see you would rather not have been here.
I was also diagnosed with another blood cancer at 53yrs old that is 20 yrs ago.
Yes, you are on a ride, I think of it as a roller coaster!!
Thanks for telling us your ride so far.
How are you and your wife doing emotionally?
My husband has his head in the sand about my diagnosis.
If you need to the Blood Cancer UK support line is there for you on 0808 2080 888.
I am also copying you the Blood Cancer UK details on Waldenström macroglobulinaemia (WM)
Waldenström macroglobulinaemia (WM) | Blood Cancer UK
However we are all individuals, with different medical histories, with your own treatment plans.
I was in shock for ages so be ever so kind to yourselves and look after yourself and please do keep posting

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Hi @Erica,

Many thanks for replying, yes you are quite right, I would rather not be here, but is what it is, yes completely agree, a roller coaster, of emotions, worse the unknown, but that will reduce tomorrow, as I get my treatment plan.

The wife she is ok, (thanks for asking) she has cancer herself (another “Lifer”)

Fingers crossed, that Chemo doesn’t effect me too much.

Many thanks for the support line

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Hi @paul4 yes, the unknown is the worst, but I do like a plan.
Please do let us know how you get on with your appointment.
Look after and be very kind to yourselves.

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Hi @paul4

Welcome to the forum - I’m so glad you found us and felt able to post. I can only imagine what a shock it must have been for you when you finally got your diagnosis. Waldenström macroglobulinaemia (WM) is a rare cancer, so you may not immediately find someone with it here, but there will be lots of people who understand what you’re going through and I hope you find it a supportive place.

You mentioned work, so I just wanted to pop this information here as many people don’t realise they have rights at work once they have a blood cancer diagnosis: Blood cancer: money and work | Blood Cancer UK There’s information about financial support as well as about talking with your employer and making adjustments to make work more manageable once you go back.

I hope that some of that unknown has been relieved now you have your treatment plan.

Take good care of yourself,

Kind regards,
Ali

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Hi @erika,

Chemo started Tuesday/Wednesday 9th/10th, Wednesday extremely foggy, till treatment at 2pm, then after Wednesdays treatment, really strange treatment, “not on this planet” I’m on R & B (cannot spell without looking it up) today Thursday, back to foggy, next round of Chemo 7th/8th Jan, ohh and a big bag of tablets… bit sweaty at night

Not doing much, just taking it easy.

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Hi @paul4 don’t forget that haematology wards and we are about over the holidays so please do let us know how you are feeling and doing. Look after yourself

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Hope you are feeling a little better.

I have W.M and it’s lots of little things that you look back on and think, mmm that’s why I felt like that.

Fatigue is the worst for me and sometimes breathless!

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Hi @Chloe54321 thanks for posting and a great big welcome.
I attach the Blood Cancer UK website details on fatigue and it is a common theme with many blood cancers
Fatigue | Blood Cancer UK
Have you spoken to your GP, specialist nurse or medical team about your breathlessness and fatigue?
I look forward to hearing more about you.
Look after and be very kind to yourself

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Thank you Erica

Im just getting familiar with the posting process.
Yes my haematologist, G.P know. I’m still on “ watch and wait” but my paraprotein is 30 now and I’m having symptoms of fatigue a lot now etc.

How are you on your journey? Have you been diagnosed long? I was spotted by G.P as having anaemia initially.

Have you received any treatments?

X

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How are you now Paul? I hope you are doing well on your treatment

Jan

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Hi @Chloe54321 I have another blood cancer, I was diagnosed by a gynaecologist through blood tests and symptoms and that was 21 yrs ago and I have always been on active monitoring. I manage my symptoms, mainly fatigue, and count myself a lucky girl.

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Thank you for all the messages, any newly diagnosed, people, keep strong.
so my last treatment is next week, wow that has flown by, all be it, the week of treatment does drag somewhat.
A little more active now, do need regular break though, so gardening takes a little longer than usual, teach me for leaving for so long!! can walk a little faster now without getting out of breath, PET scan will be booked in 6 weeks after my last treatment, so fingers crossed all will be ok, what I have noticed, since my treatment, major sweet tooth, but hey , the nurse did day eat and drink as normal, so have been normal, including, a tipple!! eating pretty much goes out of the window, during week of treatment, (Treatment Tues/Wed) I don’t actually properly till Saturday or Sunday… I’m remaining positive..

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Hi @paul4 great to hear from you again, as the saying goes, slow and steady wins the race and just the occasional treat.
Look after yourself and keep posting