Hi all, Hope you are all coping ok. Ihave been on watch and wait since 2016 with indolent lymphoma b with 1gm paraprotien. Recently been diagnosed with waldenstroms macroglobulinaemia (Waldenström macroglobulinaemia (WM)). I think I have had it all along and not accepted it. My initial diagnosis was bloods, bone marrow and ct scan. Ive since had further bone marrow and ct scans. Ive had no b symptoms but am tired and weary. I get very hot and itchy. My consultant is happy with bloods but paraprotien has been fluctuating. As Waldenström macroglobulinaemia (WM) is quite rare any tips or advice would be great. I do find covid hasnt helped as I have 4 monthly bloods and telephone consultation. They are at the end of phone and when I have next face to face it will be for treatment. I am very positive about my situation as it could be worse. I have a great family support team and they keep me on the straight and narrow. Thank you all for listening and look forward to further chats. Take care everyone.
Hi @James5 and a big welcome to the forum.
I have follicular lymphoma but am sure there will be others with the same diagnosis who can share their experiences with you.
Telephone consultations are hard aren’t they. I’m lucky that I’m back face to face for my 6 monthly checks but I know lots are still having telephone consultations.
It sounds like you have a great support system around you and we can now be added to that that.
I look forward to hearing more from you
Hi @James5 welcome, you say that you have a great family support team, well now you are part of our forum family as well.
No, Covid certainly has not helped and telephone consultations seem to have become the normal.
We are always here for a chat and I find this is the one place that I can be really honest and know that I will be understood
Lets hope that someone will be able to share their experiences with you.
I look forward to further chats and hearing more about you.
Take lots of care of yourself.
My 2017 diagnosis, following a random blood test, of monoclonal gammopathy of unknown significance (MGUS) has now developed into Non Hodgekins Lymphoma of the Waldenstrom Macroglobulinaemia variety.
Felt quite “crappy” in May & after my bi-annual, Watch n Wait blood test I got called at 23.30 by 111 telling me to get myself to A&E ASAP. In mid 2022 I’d also been diagnosed with Peripheral Arterial Disease. The Consultant said my fatigue, breathlessness & Anemia were symptoms.
Turns out it was Non-Hodgkin lymphoma (NHL)-Waldenström macroglobulinaemia (WM) & not PAD. CTScan, Marrow Biopsy, innumerable blood tests and by “close of business” this Monday I’ll have had 10 Blood Transfusions and 2 Platelet transfusions before commencing Chemotherapy on Tuesday. 6 rounds, every 21 days of Dexamethasone tablets, Cyclophosphamide tablets & an infusion of Rituximab.
How I’ll react to this is the known unknown. Meanwhile my 70yr old bladder is getting accustomed to the litre plus of “Adams ale” I’ve poured in. Interesting times ahead methinks!
Hi @Bazza and a big welcome to the forum.
It’s great that you can share what’s going on for you, which it seems is so much at the moment. How are you doing?
I hope you don’t have any reactions - everything crossed.
Will be thinking of you on Tuesday.
Please keep us updated on how you are doing.
Take care of yourself
Hi @Bazza I am so glad that you have found us.
Gosh you have had a lot going on since May, a phone call at 23.30 must have been a shock.
It is so difficult when we have symptoms that can be attributed to more than one condition. We are all unique, very complex beings.
I think that the unknown is always very scary so I will be thinking about you next week
Keep drinking the water, if it is good enough for Adam it is good enough for us.
Yep, interesting times ahead so please keep posting how you are doing.
If you feel the need to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Really look after yourself
Hi @Erica & @Nichola75,
Thank you. I will of course update the forum on how I respond to this treatment. After all, sharing is caring and while we all react differently, there will be common denominators that other beneficiaries of Waldenstrom Macroglobulinaemia may benefit from knowing. I’m slightly surprised at the, almost non-existent, dietary advice from the NHS though. I did ask if an Oncology Nutritionist was on the staff but sadly No. We are what we eat after all. Take care, chat soon.
Hi there @James5
I have Waldenström macroglobulinaemia (WM), diagnosed in 2014 and on ‘active monitoring’ (Watch and Wait) since then. As you say, Waldenström macroglobulinaemia (WM) is quite rare, so you can’t always be sure the consultants have much experience. I’m very lucky as I’ve never had any symptoms or treatment. I also have a supportive clinical team at the hospital. I had Covid last year and got the anti-viral treatment, just tested positive again this week and the anti-virals are working well for a second time (Paxlovid)! Is you’re looking for more Waldenström macroglobulinaemia (WM)-specific support/guidance WMUK is a charity specialising in Waldenström macroglobulinaemia (WM) www.wmuk.org.uk. They don’t have a forum like this, but there are regional support groups and a Facebook group. My paraprotein is generally between 9 - 12 and treatment has never been suggested. I’ve had a few phone consultations during the lockdowns, but next one is face-to-face as they’re aware people can sometimes feel a bit ‘lost’ . . . I guess each department is trying to deal with all the backlog in different ways. Take care, Beverley
Welcome @James5 and do hope you fund the Forum a supportive and safe place. I just wanted to say that the Support Services are also here for you if you should need to talk Blood cancer information and support by phone and email | Blood Cancer UK
I would just add that if you feel that a face to face appointment would benefit you, please do ask your Haematology Team or Clinical Nurse Specialist to arrange this as you are entitled to see a Clinician if you need an examination or if your symptoms are concerning you.
Take good care
Hiya, as promised, an update.
I arrived, on time, in Oncology. Blood tested. Cannula fitted. Saline & Dexamethasone administered. By 12.45, with two assurances that the Pharmacy was being chased for the prescribed Rituximab, a Doctor appeared. “The Pharmacy have forgotten to prepare your Chemo, come back on Thursday”.
An update on the physical effects of my first, of six, treatments will follow as & when!!
Oh @Bazza how anxiety making and frustrating for you. Yes, please do update us ‘as and when’. Be kind to yourself
Thanks Erica, I’ll be interested in the explanation of how this occured in an apparently “tried n tested” process thus ensuring hurried rearrangements for transport, costs, care provision and time spent explaining, without explanation why, to my friends & family. And the wasted time & materials.
Hi @Bazza the repercussions are really endless and you do not want or need that extra stress and anxiety.
Keep us posted and look after yourself and your family etc.
That’s so frustrating @Bazza! Hoping everything is ready for you on Thursday!
Thanks Nichola, I’m sure it will be, they wouldn’t dare a repeat! Hope to update on progress & reactions over the weekend.
Hi Erica, Nichola75 and Gemma
Thank you all for making me so welcome and giving great advice. With such a limited number of those with Waldenström macroglobulinaemia (WM) it will be good to share each others journeys.
I must admit reading your account made me smile as I was discovered in a blood test with similar symptoms to ypur own. I have now been told I also have cardiomyopathy whichmakes you tired and breathless. I dont know if you have the blue fingers and hands when you get cold a tip if you do stay away from freezer section in store. Luckily Im still on watch and wait its interesting to read about your treatment as even though I may never have the same Ill be prepared. You take care being 70 is just a number . I hope treatment is going well and look forward to next update. Take care
Im afraid my typing skills are not the best. Hope the joint email is not too confusing I usually improve with practice. I will endeavour to keep you up to date.
I’ve been lucky as I haven’t had any treatment. I’m also on watch and wait I have a few symptoms creeping in paraprotein around 30 consultant is only concerned when it goes over 30. Blue hands and fingers and tired and weary. Otherwise I’m fine its good to hear other peoples experiences as you don’t feel alone. Take care
A “fellow traveller” no less! My finger tips occasionally go pale & tingly, which is somewhat annoying but fortunately brief. It’s Reynards Disease says my Vascular Consultant. The dual symptoms were confusing so am hoping to eliminate one cause, albeit temporarily, with Chemo. Keep well hydrated, boost your immune system and exercise as much as you can. If your paraprotein does exceed the margin and needs snuffing out you’ll be best placed to deal with the treatment. A positive mental attitude helps too. My Marrow Biopsy shows its only working at 5% effectiveness so I’m quite keen to see that improve! Keep well, stay positive
Well it’s been nine days since I finished my first batch of 30 Cyclophosphamide tablets. Still on the prescribed Antibiotics, Antivirals & Anti Uric acid tablets. Got my first blood test, post 1st Chemo round, this time next week with my 2nd round of Rituximab infusion due on Sept 7th.
Apart from a “dicky tummy”, I’m happy to say that, “touch wood & whistle”, all is as was and the anticipated effects failed to materialise.
Five rounds to go, so it could still change, but I’ll keep my PMA and hopefully, my eyebrows .