Waldenström Macroglobulinaemia (WM)

Living with and after blood cancer
102

Hi @sajdee @Erica , Good to hear you’re positive even if apprehensive understandable but as I say a good team around you is invaluable.

As for Erica and your qualifications I’d say on the job training beats book learnt any day and if they can give out Honorary Degrees at Uni then why not a recognition as a Honorary support advisor.

As for a relevant aside to all who read this thread re Dr Google. Dr Google is predominantly American with influences due to their insured approach to treatment, differing access to such treatment and a sizable chunk of Religion. I fear they spend more time on prognosis and longevity (or not) and not enough on living.
Now where did I leave my antidepressants :wink:.

Hope all is good in your lives, and I’ll look out for your posts.
Iain

2 Likes
103

I had Waldenström macroglobulinaemia (WM) in 2020 treated with cemo for 6 mouths my number started at 49 now down to 5
2023 i walked 1160miles cycled 960 miles swam 25 miles and did 40hrs yoga
if you need any more info just ask

2 Likes
104

Wow, @richard I am in awe of you, wow.
All I do is walking and Pilates
Look after yourself and great to hear from you again, please do keep in touch with us all.

105

Hello @Iain, just wanted to pop in to agree that googling these blood cancers of ours can indeed lead to utter nonsense, often very outdated and non-medical, and frequently so generalised as to be unhelpful and anxiety-provoking.

Please be mindful not to cast an entire country’s cancer research as unworthy like you inferred about the US. I’m a Brit now living in California, a US state 1.5 times bigger than the entire UK, and it’s a far less overtly religious place. I find in my interactions with others on this forum that similar fears and treatment issues arise both here and there, with similar achievements and progress with the science behind our cancers. For what it’s worth, I’ve actually encountered more unscientific claptrap from Brits than Americans, but that’s a personal anecdote.

I’d say all cancer research is helpful, even if it’s not homegrown. My own experiences of cancer treatment and healthcare in the US is incredibly holistic with not a hint of religion. Needing private health insurance here is a total hassle though, so I’d suggest not letting the NHS keep heading that way by voting for politicians who want the NHS to flourish again.

2 Likes
106

Hi Duncan, hope this finds you well.
If my thoughts offend I assure you none are intended.
Whilst the development of Cancer management in all its aspects is strong in the US and to be respected the angle that makes me uncomfortable is not the technical/medical. It’s the mixtures of commercial and religious input to articles and forums that I’m uneasy about.
Keep taking the tablets!

1 Like
107

Hi diagnosed with Waldenström macroglobulinaemia (WM) 2 years ago…currently on watch and wait bloods every 6months

2 Likes
108

Hi @Anita612612 A great big welcome to our forum and thanks for telling us a bit about your diagnosis.
I look forward to hearing more about you so please do keep posting.
Really look after yourself

109

Hi, I have just been diagnosed with Waldenström macroglobulinaemia (WM) & wondering how to cope with Fatigue?
Any other information will be much appreciated.

3 Likes
110

Dear @Toni
Thank you so much for posting. May I ask how you are doing following your diagnosis? Are you treatment or active monitoring?
We have some information on Waldenström macroglobulinaemia (WM) - what is it, symptoms and treatment | Blood Cancer UK and we have a specific category for you to read about Blood cancer and fatigue | Blood Cancer UK.
In Waldenstroms one of the most common symptoms is fatigue so it is no wonder you ask about coping. We would always say to talk to your treatment team around this too as there may be some interventions they can suggest around supplementation (Iron, B12 or Vitamin D) if you have any deficiencies along side your diagnosis. Keeping active does help manage fatigue but often that feels counter intuitive, this is when it is good to have a routine and friends/family to motivate you to go for walks or any other exercise that you choose.
As you have only recently been diagnosed it is very important to be kind to yourself and do ask for help, we have some information here: I’ve just been told I have blood cancer | Blood Cancer UK. Also, if you would like to come through to us to talk things through you are most welcome: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma

3 Likes
111

Hi to all you fellow Waldenström macroglobulinaemia (WM) clan members and supporters.

Fatigue, the bain of our lives. Mind says do it but quickly the body says “sod this”.
My own experiences of BC may differ from some so please bear with me.

40+ years ago I had Hodgkin Lymphoma, an acute condition picked up early and treated with Chemo and Radiotherapy. I was young and otherwise fit hence I knew my body and its fatigue threshold. The treatment (MOPP) like many included Prednisolone (Steroid). I cannot recall any noticable fatigue during or after that therapy. That said I cannot comment on current Chemotherapy for Waldenström macroglobulinaemia (WM).

Time rolls on, Diabetes type 2 and Hypothyroid develop, both have influence on metabolism and fatigue. Both are managed but there are questions over such as Statins and Metformin and their effects.

So, 11 years ago with Paraprotein rising I’m on watch and wait. Aneamic as it develops there’s fatigue again . Eventually therapy starts for Waldenström macroglobulinaemia (WM) and I agreed to a trial of targetted treatment of protein blockers (Rituximab and Ibrutinib). I soon felt less fatigue, but that is of course subjective against my pre-treatment ‘knackered state’.

Ibrutinib has side effects including default fatigue and can affect the heart. For me it has been Pericardial Effusion (fluid around the heart) so I’m having to be pragmatic in my begrudging acceptance of “I ain’t going to run no marathons soon”.

If the bed pulls a little harder then yes I snap out of it and get moving but I know my day will be broken up by the need to rest. Thankfully my fatigue is only physical and not mental.

To bring my ramblings to an end my main comorbidities all have a part in fatigue, and along with too many birthdays it makes for a cocktail I’m sure where I’m not the only one in a similar scenario. My condition, like many, is not curable but manageable and that is my approach to day to day living. I don’t like the fatigue but as 72 year old I must accept reluctantly it influencing my Quality of Life.

Pilates, Yoga, Seated Excercise etc all have good reputation and I’m sure @Erica , @GemmaBloodCancerUK and the BCUK team can direct us to suitable videos or groups.

Wishing you all the best on your varying clinical experiences.
Iain

4 Likes
112

Thank you so much for your post @Iain, we certainly do and there are some great videos here:

Exercise videos for people living with or after blood cancer

Once you’ve spoken to your doctor or nurse about keeping active, you could try these simple exercises, demonstrated by Anthea and Marion, who are both living with blood cancer.

The exercises will help you to move more, gradually build up your strength and find a level of activity that feels right for you.

It’s really important that you warm up before exercise. Before trying any of the videos on this page, start with this gentle warm-up.

A series of low-impact cardio exercises to energise and build fitness.

Exercises to build strength if you’re living with blood cancer.

Take 12 minutes to try these floor-based exercises to build fitness and strength.

It’s important that you stretch and cool down after exercise. Follow this simple cool-down routine after any fitness session.

Cancer Exercise Specialist Lizzy shares her top 10 tips for keeping active with or after blood cancer.

Staying motivated

When there’s lots going on, it can be hard to keep new things up, even when you know they’re making you feel better.

Your activity levels might change week to week, for many different reasons. Go easy on yourself, it’s normal to have ups and downs.

Talk to other people with blood cancer about getting active in our online community – you’ll find lots of people there to cheer you on!

An activity planner can help you plan activities for the week and celebrate what you achieve each day – big or small. Order an activity planner from our online shop. You can stick it on your fridge or somewhere you’ll notice it.

How to progress

If and when you’re ready, you could think about how to build up your daily activity. Find out what is recommended for your age group – NHS UK has more information on what to work towards. As a general guide aim for:

  1. 20-30 minutes of being active daily.
  2. Activities to keep your muscles strong at least twice a week.
  3. Cut down on the amount of time you spend sitting down if you can. When sitting, try to get up and move every so often, even just to get a drink or make a phone call.

The websites We Are Undefeatable and OneYou have lots of activity ideas. Or If you could try the NHS couch to 5k podcasts to gradually start or get back to running.

3 Likes
113

Thanks @GemmaBloodCancerUK for those links to exercise.

I’m looking for the one where I carry 2lbs in each hand away from the bar. I think that covers aerobic, anaerobic, hydration, balance/gait and social wellbeing - well that’s my excuse I give the Barman🍺

5 Likes
114

Thanks for these great tips, @Iain and @GemmaBloodCancerUK! And sorry to read of what you’ve lived with, Iain, although I love your practical attitude and efforts to tolerate it all.

3 Likes
115

Hi all!
I hope you are all doing ok??

It’s been a while since I was last on here.
The last post I think was asking if anybody had experienced Zanibrutinib as treatment? There were discussions last time we spoke about me starting this but my consultants longed it out as long as possible on watch and wait and have now just been advised it is time for me to start treatment once more.
I am over 8 years post chemo from my last treatment which was Velcade & rituximab so it seems a lifetime ago! I feel very lucky to have got this far without further treatment!
Could I possibly ask if anyone has had the Zanibrutinib and how they found it? I believe it is a tablet form of chemo taken 4 times daily. I’m wondering about side effects, how it made you feel and also did you experience hair loss???
Any advice would be so very much appreciated.
I’m at the hospital tomorrow 5/11/24 for a Plasma Exchange and to meet with my consultant to discuss said treatment.
I will update how I get on.
Take care all.
Sara xx

1 Like
116

Hi @sajdee great to hear from you again, I’ve missed you.
I hope others will be able to share their experiences of Zanibrutinib.
You say that you are seeing the consultant tomorrow so perhaps ask them all the questions that are whizzing around in your head, including your fears and practicalities.
They also know your whole medical history.
Yes, please do update us how you get on.
Be ever so kind to yourself and we are always here.

1 Like
117

Thank you @Erica , always so kind as always :heart:

1 Like
118

So, I had a plasma exchange this week which has made me feel a lot lighter thank goodness. I will be starting chemo once more. Next Thursday is d-day.
I’m currently 6 years post treatment from before).
I will be having Bendamustine & Rituximab.
So hoping I get on well with it and is as successful as my last chemo regime xxxx

1 Like
119

Hi @sajdee please do let us know how you get on after d-day.
I will be thinking of you, really look after yourself

1 Like