my husband was diagnosed with Waldenstrom Macroglobulinemia in november 2023 after being seriously ill for months if not years, he is now in his 4th cycle of chemo and seriously still unwell. no energy, distant, dizzy tired all the time. the most distressing symptoms also are excrutiating pain that jumps all over his body, like electric shocks that travel up from his big toes through his legs and arms up to his neck and face. he screams with pain and no pain killers seem to help him at all. it is distressing to watch. his specialist tells us it is not due to his cancer as the protein in his blood has reduced and his pains are not related. we are going mad here and being his wife and now carer has created huge frustration and we are out of ideas,. has anyone else had this symptom, any advice would be appreciated. my husband is not tech savvy so i have joined the forum on his behalf.
I am so glad you have joined our forum @wendycodd, welcome to you both.
I will copy a link to the Blood Cancer UK website on Waldenström macroglobulinaemia (WM) for you both.
Waldenström macroglobulinaemia (WM) - what is it, symptoms and treatment | Blood Cancer UK
I will also copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
If your husbands specialist has said his symptoms are not due to his cancer or treatment, it might be that your husband needs to go to his GP.
It is worth you and him writing down his symptoms, when they started, their severity and impact on his life.
Also take a copy of his medical history and Waldenström macroglobulinaemia (WM) diary of events.
I am definitely not a medical person, but I have had a few different unconnected medical challenges since my diagnosis 20 yrs ago.
You might also consider a 2nd opinion via your GP or, if it were possible, privately at your cost or via any insurances you might have.
I reckon being a carer and tech savvy person are the hardest jobs in the world, and you are the unsung hero, look after yourself as well as you look after your husband and please do keep keep posting.
I also recommend the above for specific information and a helpline.
thank you for your advise i will contact them.
Hello @wendycodd,
Sincere apologies for not replying sooner to your post.
Have you managed to speak with someone about your husband’s symptoms?
Please do call our helpline if you want to talk things through: 0808 2080 888
I appreciate his Consultant has said your husband’s symptoms are not related to his chemotherapy, but did they suggest what he could do to help himself, or what it could be?
I would advise asking for an urgent GP review, and telling them the Haematologist has said this is not Waldenström macroglobulinaemia (WM) or chemo related. They may need to investigate other possible causes with blood tests or specialist referrals (i.e. Neurology or for nerve conduction studies etc).
I do hope that he can get some relief soon.
Best wishes to you both, Heidi.
Dear Heidi
Thank you so much for your answer.
Yes we have spoken to the Waldenström macroglobulinaemia (WM) society in the UK and the lady Alison there was very informative.
It is necessary to have the nerve tests conducted and these are booked for Monday 4th paying private as the Spanish health system is as bad as the NHS for waiting periods…. I hope we can gain more insight into what it is and what treatment is available and I do also believe that he has to see a neurologist too if they find out it isn’t to do with his cancer.
All help is gratefully received and advice at this trying time so thank you once again for coming back to me.
Regards
wendy
Hello
I also have Waldenström macroglobulinaemia (WM) and live in Spain.
Experienced symptoms like your husbands when I stopped Ibrutimib.
Currently receiving BR followed by a stem cell transplant around May
Derek
Hi there
Thank you for your response.
Kevin is on different chemo drugs and so we don’t know how to treat these nerve pains which has him screaming in pain. Very distressing.
Are you being treated under the Spanish health system or private?
Where are you based in spain?
Regards
wendy
Morning Wendy.
My doctor prescribed some low dose steroids and Tramadol which helped relieve the pain. Most of my pain was came from the Ibrutinib withdrawal.
We use the Spanish Health Service. Stay in Murcia Region.
Received neurological and MRI scans.
Tests indicated that some of the pains was probably vascular caused by the Waldenström macroglobulinaemia (WM) rather than neurological.
Hi @Derek1 welcome, yes, most countries have varying approaches to diagnosis, treatments and available drug regimes.
There is UK information on Waldenström macroglobulinaemia (WM) above
Please do keep posting how you are getting on.
Look after yourself
Hi. I’m new here. One of these things that you hope never having the need to look up but here I am. I went to the GP towards the end of January with an unrelated issue and he decided to run a blood test. Here I am, six weeks later and starting treatment tomorrow for Waldenström macroglobulinaemia (WM). I’m at stage 3 with a IgM reading of 47. The thing is, I have no symptoms and I am actually feeling great. I keep myself fit and healthy , for a 56 year old, and still cant take it all in. I keep thinking they must have my blood, ct scans and bone marrow mixed up with someone else.
So, starting off on a new journey tomorrow with chemo tabs and steroids. I’m not starting Ritiximab until cycle 3, which means im going to be getting treatment right through to August.
How bad is the next 5 to 6 months going to be for me?
Oh @ADM14 welcome to our forum.
Yes, I have to say I certainly did not have blood cancer in my plan for life.
It did take me months to come to terms with my diagnosis I have to say and I still get anxious before during and after medical tests and appointments 20 yrs on.
I was diagnosed 20 yrs ago.
I will copy the Blood Cancer UK information on Waldenström macroglobulinaemia (WM) for you
Waldenström macroglobulinaemia (WM) - what is it, symptoms and treatment | Blood Cancer UK
You ask how bad the next 5 - 6 months will be for you and I think you will hear varying experiences.
What I would say is be advised by your medical team ( a specialist nurse is usually a good contact) and keep them advised of any symptoms you might experience.
I hope others will share their experiences for you.
Just be kind to yourself and please do keep posting how you are.
Thank you, Erica. I shall take time to read the information on the link you have provided and ill post here how things go.
I have a great medical team around me and plenty people who are available to me. Im not apprehensive just keen to get started tomorrow.