Waldenstrom's Macrobulinemia

Both your disease type and proposed treatments are extremely rare. Email Poguy for direction if he does not write here soon,

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Rocquie said:

Herbal Supplements

Judy JoJo, you don't give us much to go on here. Are you diagnosed with WM? Do you have a Hematology Oncologist? Chemotherapy would be the normal first response for treatment. 

I would not trust my cancer to curcumin (turmeric, a spice of the ginger family), bioperine (black pepper extract), or extra virgin olive oil. They are healthful and delicious, and safe to eat and cook with, but won't treat cancer. 

Rocquie

 

 

OP: Do not put any faith or trust in this spice, that spice, or "alternative" so-called remedies. They are wishful thinking at best, and criminal fraud at worst. Waldentron's Macroglobulinemia (newer term: lymphoplasmacytic lymphoma) is a rare, almost hybrid cancer in that it resmebles both B-Cell Lymphoma as well as Myeloma. If you want to make progress against it, get yourself to a National Cancer Institute designated comprehensive cancer center and avail yourself of the latest in scientific studies and the best and brightest medical minds. Save ther spices for food. 

I think many people consume turmeric without even being aware of it. Turmeric is used to make mustard yellow. I love and eat all sorts of mustards but usually gravitate to good old fashioned turmeric-filled American style mustard for sandwiches. I also make my own curry sauce which is chock full of turmeric. I freeze it in small batches and use it to make curried foods. My favorites are shrimp and sweet potatos. Turmeric is now becoming available in its fresh form - a root similar to ginger. I like fresh turmeric sliced paper thin in soup and chili. I get it at Wegmans. I have noticed that the electrolyzed water fraudsters are now pushing turmeric at outrageous prices. Turmeric is ubiquitous and inexpensive - thus no need for the supplements. I eat it because I like it.

"Of all cancers involving the lymphocytes, 1% of cases are WM.

WM is a rare disorder, with fewer than 1,500 cases occurring in the United States annually.^[1] The median age of onset of WM is between 60 and 65 years, with some cases occurring in late teens."

My former inlaws were diagnosed almost simultaneously, him with multiple myeloma and her with Waldenstrom’s. I know she was treated with a biologic and he was treated with an oral chemo derived from (I think) thalidomide. He is a retired physician so he knew where to go and whom to see. Both are doing great 12 years later. His father died of MM back in the late 70’s when it was called “a-leukemic leukemia”. It was so rare that it had no formal name at the time. I tend to think it has always been around but frequently misdiagnosed.

hjarchower said:

A Question and Thanks ShadyGuy

Thank you ShadyGuy for your imput. I just took my first scan after 6 months of Bendamustine, some Rituxan, and Neulesta. My results today are only half of the Cancer is gone. Do not see my Doctor until next Tuesday. How long do you have to wait to try more Bendamustine again? Or do I even try it next?

 

Howard

I checked with the person I mentioned. She was treated with thalidomide and Rituxan. At 12 years she is still going strong. The thalidomide is quite unpleasant. Good luck!

hjarchower said:

OMG I did not realize Evarista

I was diagnosed in August of 2017 and no one explained how rare it is.  Howard

WM is rare, but it is an indolent form of malignancy. Thus, like the indiolent lymphomas, it is considered to be a chronic, manageable disease. You live with it, treating it when appropriate - normally when it becomes symptomatic, or when it affects normal blood function.

From Dr. Bruce Cheson, one of the acknowledged experts.

https://www.youtube.com/watch?v=ZTScDMnzNls

po18guy said:

Expert info regarding Waldenstroms Macroglobulinemia

From Dr. Bruce Cheson, one of the acknowledged experts.

https://www.youtube.com/watch?v=ZTScDMnzNls

Awesome info, thanks po18guy!

NannieOakley said:

Question about ibrutirib

Hello, I was diagnosed with WM in March 2018. Have completed 6 months of Bendamustine/Rituxin/Neulasta. Am now on Rituxin maintenance. Also on Xarelta as I had 3 superficial blood clots in past 5 months---really the only side effect I've had but we don't know if due to the chemo or to the disease process. Now my dr is suggesting adding Ibrutirib as my hemoblogin is still a bit low and my IgM is greatly reduced but not back to normal.  Anyone else had experience with this drug? Besides being very expensive, I'm nervous about taking it while on a blood thinner as bleeding is also one of the side effects of ibrutirib. Thanks for any feedback!

 

N.O,

I have not used this drug but this is a data sheet on it. It does say that it reduces platelet levels in over 30% of all users.

To open the link, do the following:

1. Highlight the whole link;  2. Right click on mouse; 3. Click on "Go to...."

http://chemocare.com/chemotherapy/drug-info/ibrutinib.aspx

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