I AM NEW HERE!

[Loverof3]

Hello New Friends,

I was diagnosed with Waldenstrom macroglobulinemia last week. I am currently asymptomatic. I am frightened to my core about what the future may or may not hold. Is there anyone in this group who can please share how they have coped and what they have learned about treatment, diet, exercise and anything else that can help prolong my life?

[Maltipoo]

Hello Loveof3,

I am sorry for your diagnosis but thankfully you are asymptomatic. I was diagnosed with Mantle Cell Lymphoma 5 years ago. I had chemotherapy and a stem cell transplant. Two years ago I started searching for anything that would help keep the cancer from returning. I have been trying to heal myself physically, mentally, and spiritually. I have radically changed my diet. I eat a plant based, whole food diet and started walking or doing exercise every day. I also attend mass on watch the mass on tv every day. I try not to worry because worrying will not give me an extra day on this planet. Please read the following books which you can get at the library and watch youtube presentations by the following doctors:

Dr Michael Greger "How Not to Die"

Kelly Turner PhD "Radical Remission"

T Colin Campbell "The China Study"

Please let me know how you are doing.

Peace and good health!

[Snoopy234]

Hi, I was diagnosed with Waldenstrom's in January 2020 through a routine blood test. At the time, I was asymptomatic. Three months later I contacted Covid and my lymphoma flared, necessitating a maximum daily dose of Imbruvica (560 mg). I was kept on this dose until I left hospital (being treated for Covid) three months later, at which time my hematologist lowered the dose to 140 mg per day. After about three months on this dose, he doubled the dose because due to the results of my blood tests were unsatisfactory. Two months ago he started me on a new treatment: Imbruvica combined with Rituximab. I am now on one 140mg dose of imbruvica daily and had four weekly infusions of Rituximab in April. I shall have four further weekly sessions in June, then we shall see whether this treatment has worked in helping to reduce the lymphoma. The only symptom I have is a lack of energy and the imbruvica is causing brittle nails, but thankfully no other side effects.

Try not to worry. Waldenstrom's lymphoma is very slow growing and there are several drugs which can be used to keep it under control. If one doesn't work, there are others that can be used. Even though this is a very rare cancer, research into its treatment is ongoing and the results are optimistic. For peace of mind, I asked my doctor what symptoms could be caused by the lymphoma and which could be side effects of the medication. For the lymphoma, he indicated headaches, night sweats and fever. The Imbruvica could cause mainly palpitations or bleeding, in which case one may have to try a different medication or lower the current dose if possible. The palpitations can be managed by heart medication, which allows for the continuation of Imbruvica. I have a fried who works in palliative care and he told me that because the disease is so slow moving, people who have Waldenstrom's almost always die of something else first. So for the time being I'm not worrying about an early demise. Of course once one has been diagnosed with cancer, it's only human nature to have it at the back of one's mind and to worry about any unusual symptoms, but you can always ask your doctor about any concerns.

I am leading a normal life (as far as the Covid pandemic allows...), just feeling a bit less energetic - but this could be the aftermath of Covid. Try not to worry. If you like I can send you a link to a recent article on research into the treatment of Waldenstrom, which is really optimistic 🙂