Help for Lymphoplasmacytic Lymphoma (LPL)

[heal11purple]

Anyone out there been diagnosed with Lymphoplasmacytic lymphoma ... a bone marrow and lymph circulating IGM blood cancer? I'm trying to do as much as I can naturally - already been thru 4 Rituxan infusions May 2018 and now blood results (IGM going up again, hemoglobin going down, WBC very low at 1.5 and have not come up since last year. Now on Imbruvica which is helping boost hemoglobin and lower IGM but platlets (clotting factors) are going down causing blood blisters on legs, bad indigestion, muscle/bone pain. tiredness. Appreciate anything you can share. I am very sensitive to drugs ... do better with natural remedies and have been trained in the allied healthcare field of Trager Bodywork & Movement Awareness Therapy as well as Massage Therapy. Following my evolving path with meditation, healthy eating, relaxation, movement, water therapy, visualization and whatever else feels "good' to my system.

Elizabeth

[Jm954 Administrator]

Hi Elizabeth,

your condition is more like Waldenstrom's Macroglobulinaemia if it's disseminated in bone marrow and you also have the IgM paraprotein in your blood.

It's very important for your health to keep the IgM levels down so please don't stop taking your Ibrutinib and treat it yourself with 'natural' remedies. Most people find that the non haematological side effects of Ibrutinib reduce over time.

Jackie

[heal11purple in reply to Jm954]

Thanks so much Jackie for your reply - yep staying on

Imbruvica - right now dealing with a rash - waiting for results from biopsy & hoping it's something minor

[Jm954 Administrator in reply to heal11purple]

I hope so too x