Waldenstrom

[Guinness4822]

Although having been told I have CLL and was on watch and wait for 12 years and now been on treatment for 9 months, my new consultant now tells me he thinks I have the rare Waldenstrom Leukemia. Does anyone know if my prognosis is similar to CLL or am I on the correct treatment even of Ibrutinib and Venetoclax. Not much info out there on this condition. Plus am I now in the right group.

[AussieNeil Partner Administrator]

Waldenström macroglobulinemia (WM) is another close Non-Hodgkin's B cell lymphoma cousin to CLL/SLL, so, yes, the two lymphomas share treatment drugs in protocol, but the dosages may vary. I'm certain we have other members with WM, given there isn't another HU community specifically for WM. That's understandable, given it is much rarer than CLL/SLL, but unfortunately, the admins and volunteers aren't knowledgeable about WM.

You may get more answers if you lock your post as explained here. healthunlocked.com/cllsuppo...

Neil

[Guinness4822 in reply to AussieNeil]

Thanks Neil.

[FredNerk]

Venetoclax is not yet approved for the front line treatment of Waldenström Macroglobulinaemia (WM). It has been used in studies in combination with Ibrutinib.

I suggest checking out iwmf.com/ for more information regarding WM.

There is another group on here called 'Non Hodgkin's Lymphoma Friends', although the postings there are quite sparse.

With WM the main blood marker to track is your monoclonal Immunoglobulin M (IgM) level whereas with CLL it's your Absolute Lymphocyte Count (ALC).

There are many similarities with CLL, i.e. slow growing, bone marrow crowding and being incurable but treatable. Many of the symptoms overlap but WM has some that are peculiar due to the effect high levels of IgM has on the body.

In terms of prognosis there isn't much use in looking at survivorship data based on older (chemo) treatments as the options available are rapidly developing (mostly repurposed CLL treatments).

It's somewhat surprising there appears to be some confusion with your diagnosis this far into your treatment. What are your IgM and ALC levels? Have you had a bone marrow biopsy?

[Guinness4822 in reply to FredNerk]

Thanks Fred. Yes I had a bone marrow biopsy before treatment was decided on. I think confusion lies on having had so many changes in doctors over the last year 4 in all. I will ask at next consultation about Igm and ALC levels. I do feel much better with treatment and apart from Neutophly levels being low which I have a weekly injection for I'm told bloods normal range.Again thanks for post.

All the best.

Tony.

[JA2326]

Hi Guinness. I’m on the same boat, although I haven’t started treatment yet. Everything looked like CLL until a few months ago, except the rising IgM level—WBC count now around 36k, hemoglobin bobbing in the 10.5-11.0 range, enlarged spleen, etc. But I asked my doctor, mostly out of curiosity, what to make of the IgM readings. Upon closer look, including PET, BMB and flow cytometry, they told me it is pathologically WM. I’m not really sure what lies ahead, but even CLL is very rare in Japan, so in that respect it may not be a big difference for me. I still hang around in this HU group because I think it’s very informative and people are kind.

[jcb98311]

I have CLL and lymphoplasmacytic lymphoma (diagnosed from the BMB). This is apparently also called Waldenstroms. In addition to Imbruvica, my doctor started me on an 8 week protocol of weekly Rituxan infusions for the LPL. Then 6 months later, another 4 weeks. My M-spike is still extremely high 4 years later, but things seem to be under control and I can function fine.

[Guinness4822 in reply to jcb98311]

Hi JCB thanks for reply seems like similar circumstances to me although different meds. Good luck with your journey.

All the best.

Tony.

[Jungster]

I agree with Fred. For the lastest treatment information on Waldenstrom’s the IWMF is such a great resource. They have so many articles and webinar links. My hematologist in Canada refers treatment advice to Physicians that regularly post information on the IWMF website.

I received treatment in 2024. I had 6 rounds of Bendamustine and 8 rounds of Rituximab. If receiving Rituximab it is so important to wait until your immunoglobulin level is below 40. If Rituximab is administered prior to a decrease in the IGG level there is a greater risk of a reaction.

I’m feeling great now and has an excellent response to treatment.

Take care

Tracey

[Guinness4822 in reply to Jungster]

Thanks Tracey.

[robwats]

Hello Guinness. I have WM which was diagnosed after a bmb and an original CLL diagnosis. I was on w&w for 7 years and have just finished the "standard" first line treatment of 6 cycles of Rituximab and Cyclophosphamide to which I've responded well. Second line of treatment approved by NICE is zanubrutinib. If you are in UK the WMUK website is a great place for information. They are running a conference later in the year in conjunction with the international WM charity. Lots in input from clinicians re treatment on the agenda.

[Guinness4822 in reply to robwats]

Thanks Rob I'm interested in conference. If you have any details please let me know.All the best,

Tony.

[robwats in reply to Guinness4822]

Tony, the 2024 patient forum is on 21st September in London. Either attend in person or virtually- small fee payable. Details and agenda are on the wmuk.org.uk website. You may need to register first. The conference last year was in Birmingham and was an excellent event with clinicians specialising in WM treatment and research plus other patient experiences. Rob

[Guinness4822 in reply to robwats]

Thanks Rob.