Treatment

[brooklyn7672]

Hi. This is Rosa. I've been posting questions for some time now and appreciate the responses. Apparently, upon further research and notes from my Oncologist, I am battling a rare form of LPL (Lymphoplasmacytic Lymphoma) I would like to hear from anyone who is on treatment for LPL, not CLL to discuss treatments, side effects and future progression.

Thank you again for your support

[AussieNeil Partner Administrator]

Hi Rosa,

Thanks for sharing that you don't have CLL. I'm sorry to hear that you have a much rarer lymphoma. You may still benefit from an expert opinion from the CLL Society, however.

I would also strongly recommend that you update your profile and even note in your posts, that you've been diagnosed with LPL. That will help our members appreciate that their CLL experience may not be relevant when they consider replying to you. You can update your profile here: healthunlocked.com/profile/...

Neil

[lankisterguy Volunteer]

Hi rosa / brooklyn7672,

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You may want to read more background info here:

healthline.com/health/lymph...

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That article mentions the more familiar subset Waldenstrom

mayoclinic.org/diseases-con...

uptodate.com/contents/clini...

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If you have not found an expert in your disease, my doctor Richard Furman MD at Weill Cornell NY Presbyterian (upper Eastside Manhattan close to Brooklyn) is both a CLL expert and a Waldenstrom expert.

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Here are the 10 times Waldenstrom is mentioned in past postings: healthunlocked.com/cllsuppo...

And the 5 times Lymphoplasmacytic was mentioned in past postings : healthunlocked.com/cllsuppo...

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Len

[JigFettler Volunteer]

Hi! Thank you for sharing, albeit a less usual presentation, knowing this helps giving perspective to us all.

Uncertainty is something we all know and struggle with. Bringing our uncertainties to the forum is one way of managing.

Finding a Haematologist with expertise in PLP I am sure is essential for you. lankisterguy has already eluded to that.

Wishing you all best wishes for your "battle ".

Jig