Hi AnnD
Fantastic news you are doing so well! It’s always good to hear encouraging news on how people are doing post diagnosis and treatment. I too finished my treatment 2yrs 8mths ago at UCLH London with Dr D’Sa’s clinic. She is an amazing consultant and a true expert on WM.
I’m also doing really well with my lgm level reduced from 52 to 6 at my last reading. I’m due another 6 monthly check up in January so keeping everything crossed.
Wishing you all the best and may your good news continue!
Sara x
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Thank you sajee, you’re lucky to be with Dr D’Sa.
Keeping my fingers crossed for you, I’m still on 3-4 checks, they don’t seem to want to let me go!
Would very much like to know Dr D’Sa’s views on the vaccines available!
Particularly as I’ve heard the Oxford one is a live one.
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Hi Vitaspin, thank you for you comments, I am now under a haematologist at Wrexham who understands WM and I will be seeing him on a three months watch and wait, my next visit is in January. Regards Keith
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Hi Keith although we hope to be hearing from you a lot before January, please do let us know how your appointment goes.
Don’t forget we are all supporting each other through these difficult times on our forum.
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3 posts were split to a new topic: Periodontal disease - has anyone got any experience with this
Hi Sara,
I have just joined this site, and found your post. Just spotted this is almost 3 years old, so hopefully you are feeling much better now?
I found out I had WM 20 months ago. I had a very swollen throat and couldn’t breathe. I actually thought it was an allergy, as I had so many others. - It was the begining of the lockdown and GP’s were really doing face to face appointments. But I couldn’t speak properly, so after emailing the surgery, they rang me, realised what I said was true, and made me an appt that same day. The GP felt my neck, and made me an emergency appt with the ENT dept at the hospital the next morning. Who refused to let me go home. Long story shortened, I was on steroids for weeks to get the swelling down. Then 8 months of R-bend for the WM. Then the swelling in my throat was still there, had a biopsy which showed it to be cancer. Had Radiotherapy last December. Had a scan last month, and will hopefully get the results of that in two weeks time.
It’s been a very long and hard journey to get where I am today. I do feel better. But very tired. I also get very painful throbbing pains in all my bones, worse in my legs, and especially at night.
It would be very helpful I think to chat to others that have already been through this. Or help others that are facing the same gruelling treatment.
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Hi @Twinkle a great big welcome to our forum, your post will be so useful to others.
Have you got your current symptoms checked out with someone on your medical team as they sound very painful and anything that effects my sleep stops me functioning during the day.
Yes, the main values of the forum are supporting others and realising you are not the only one.
I look forward to hearing more about you, look after yourself.
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Hi Erica,
I have told my Consultant Haematologist many times about the bone pain, he never says much about it. Just says it’s a symptom of the WM. Not much help really.
A new symptom for me is, I go for a lot of walks, and I get spasms in my legs and feet. Just for a few seconds they go numb. Then the spasm passes and they are ok again. Does anyone else get this?
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Hi @Twinkle I will copy your post to @GemmaBloodCancerUK the nurse to see if she can help you. Take care and I am a great walker too
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Aww thanks Erica. I really appreciate that. 
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Hi @Twinkle ,I am sorry to hear that your Haematologist dismisses your concerns re bone pain its not a good feeling 
. Ive been diagnosed with MGUS IGg Kappa, and on “watch and wait " every 12 weeks . I can relate to the foot numbness as I have neuropathy in my feet caused by trapped nerves in my spine which isnt caused by the MGUS ,(some paraproteins do cause neuropathy,)its not a good sensation but im having to live with it and its just who I am now.I dont get too much back pain but i use voltarol if I do ,not the same as” in the bone "pain though as mine is arthritic .I do back exercises advised by Physio so maybe thats someone to speak to and check you out,I was reffered by the Neurologist a while ago, you can refer yourself if you have a Physio at your surgery. As @Erica says and you I also enjoy walking and use poles to do Nordic walking which helps clear the cobwebs and keeps me going.
Another thing I find helps is stretching the hamstrings before bed so i dont get woken with cramps 
It works for me so just a few thoughts ,hope they help 
Bannanacake
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Aww, firstly I am sending you a virtual hug (((xxx)))
Thank you too for your tips.
It’s strange with my Haemotologist as he has been very good in other ways. But, it just seems like all the symptoms are what he would expect with WM so he just dismisses them. The bone pain is possibly the worst pain I have ever had. It throbs, and it’s scary. It also makes me cry. He just tells me that other people suffer from it too. Which is no help at all.
I try to go for a walk every day. I need to get my strength back so I can go back to work. I am self employed and have had to take the last two years off as unpayed holiday. Tried going back for 3 afternoons a week, my gosh I sure did find it a struggle. And that was on light duties. - I am a landscape gardener. I love it but it’s very hard work.
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Hi @Twinkle thanks for your reply and virtual hug ,wow no wonder you
Want and need you’re strength back to return to work and it is all about little and often and pacing yourself and from the sound of it youve" been through the mill".I know what you mean by crying because it" hurts and is scary" .I have days like that when it all feels too much with numb feet and the messages dont get to my brain,I dont have the pain fortunatley but sometimes as well its a good release to cry Have you heard of pain clinics ,?perhaps enquire from your GP or Hospital Team ,they are for people with hard to treat pain.Yes and its typical that Drs do just take it as a symptom but you’d like them to at least give you a life line.Ive found it useful and helpful looking at the BCUK website on how to cope and I use the meditations every day ,Ive also done that previously it takes you’re mind of things .The support line is good if you need to talk and of course the forum,Ive learnt a lot from BCUK in being supported and how to look after myself .
Hope that helps @Twinkle ,off for my walk 
Bannanacake
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Dear @Twinkle, I am so sorry to hear that you are in so much pain. It is great that you are walking regularly to ensure your fitness is maintained. The numbness you mentioned, do you also get pins and needles? This could be peripheral neuropathy which is documented as a side effect of WM, but this does not mean you have to tolerate it untreated. This is indicated when the IgM level is high so this is worth checking with your Consultant or Clinical Nurse Specialist, here is our information here Waldenström macroglobulinaemia (WM) symptoms and diagnosis | Blood Cancer UK Thers is also some information from our colleagues at Lymphoma Action regarding side effects: Lymphoma Action | Lymphoplasmacytic lymphoma and Waldenström’s macroglobulinaemia. I would also be mindful of ensuring that this pain is in fact related to the WM and no other cause. I would suggest a visit to the GP and if appropriate a referral to the pain clinic. I do hope you get some support with this and do call if you need to discuss this further. Take care Gemma
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I can identify with your bone pain experiences @Twinkle as I get them regularly. I also lose feeling in the top of my legs when I go out walking and suffer ongoing discomfort. Like you my consultant doesn’t take me seriously and never takes any action. I hope things get better for you and you find some relief. Let us know how you get on.
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Thanks Franko. – I have a phone appointment with my Haematologist next month, so will let you know what he says about the numbness. I am not holding out much hope.
Also hope things improve for you too.
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Thanks Gemma.
I don’t so much get pins and needles, but I do feel like someone is stabbing me with cold needles. I have that in my fingers now as I type this. I get very painful hands. It hurts to bend my fingers into a fist. I bought some hand exercisers to hopefully help with that.
Thanks very much for the links, I’ll go and have a read.
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Hi Twinkle
I was diagnosed with WM in 2015. I’ve had treatment, B&R and am currently back on active monitoring after treatment ended 4 years ago now.
WM is a funny old thing and comes in many guises.
The experience and symptoms can be very different from one person to the other. It’s very difficult to compare. It’s complex and there are few consultants that specialise. I usually find that if I have any other symptoms I’m often told it’s nothing to do with WM! A bit different from your experience.
Personally I feel the symptoms you have should not be dismissed quite so easily and should be investigated so you can get the right help.
Have you found the WMUK website, it’s dedicated to us WMers, if not pay a visit it’s full of good information and advise. We have a Facebook group where you can ask all sorts of questions and there is always someone there to help. Bob Perry, a WMer, is the patient support manager and can help you through the maze. You don’t say where you are, there maybe a WM specialist near you which you can get a referral to.
I wish you all the best and hope to see you on the Facebook group page.
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Aww thanks AnnD. I have visited both of those sites. Although not actively joined in with any conversations.
It’s nice to actually meet another WM’er. Although I wish neither of us had it.
I realise everyone is different, but it gives me some hope that you are still on active monitoring after 4 years. – Keep on doing whatever it is that has gotten you to where you are now.
I don’t know if we are supposed to say where we are from / living. But I don’t mind telling you all that I live in Halesowen in the West Midlands.
I will go and have another look on the FB group now. Maybe I will find you on there.
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Hello @AnnD I was interested to read your post .I looked on the WMUK website ,i didnt know there was a website so thanks.From memory I think my Mum must have had agglutinins as she had the typical blue extremities in relation to cold ,was monitored by the Heamatologist and had either blood transfusions or plasma exchanges,plus he stressed the importance of keeping a constant warmth .I was trying to explain this to my GP and Neurologist (when I was seeing her ) She tested me for cryogobulins but I was clear .I have gone on to develop MGUS IGg Kappa so im on watch and wait. I’m interested because of this,and also if there is a genetic link to this kind of blood disorder,at the time it wasnt given a name late 80’s early 90’s ,think this would have helped her and definitely me to understand the condition better and her subsequent deterioration.
Its great that there is support now for anyone needing it ,plus here ,Myeloma UK and the BCUK website.I wish you all the best and @Twinkle too.
Bannanacake
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