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Waldenstrom's Macrobulinemia

Judy JoJo
Posts: 1
Joined: Jan 2018

IS ANYONE TRYING CURCUMIN, BIOPERINE, EVOO FOR WM AND IS IT HELPING?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

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

max

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

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

 

 

po18guy
Posts: 1009
Joined: Nov 2011

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. 

lindary's picture
lindary
Posts: 662
Joined: Mar 2015

I love turmeric. I take it because of it's anti-inflamatory properties. Especially for the gut. That said, when I was diagnosed with lymphoma it was one of the first things I dropped before the Dr even reviewed my list of supplements. I also stopped drinking my herbal teas. All of these can affect how the chemo drugs behave. There is no way I would ever consider using herbals to treat cancer.

When I was going through my chemo a co-worker told me his sister had just been diagnosed with lymphoma but had decided against chemo. She did some kind of "natural" treament which left her with nausea, weak and in pain. She finally agreed to go to an oncologist who got her on a chemo treatment. She is now in remission and wished had done the chemo first since there was no pain or nausea. (We all know you cannot avoid the fatigue.)

ShadyGuy
Posts: 426
Joined: Jan 2017

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.

hjarchower's picture
hjarchower
Posts: 14
Joined: Feb 2018

Is it true that Waldenstrom Macroglobulenemia (Spelling?) is an extremely rare type of Cancer?

 

Howard

Evarista
Posts: 268
Joined: May 2017

"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."

hjarchower's picture
hjarchower
Posts: 14
Joined: Feb 2018

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

po18guy
Posts: 1009
Joined: Nov 2011

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.

ShadyGuy
Posts: 426
Joined: Jan 2017

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's picture
hjarchower
Posts: 14
Joined: Feb 2018

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

ShadyGuy
Posts: 426
Joined: Jan 2017

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's picture
hjarchower
Posts: 14
Joined: Feb 2018

I have an apointment set for April 2nd with the WM Institue at Dana-Farber in Boston. Somehow I got in to see Dr. Castillo, who from what I've read up on is the "MAN" when it comes to WM. Hopefully he has a Clinical Trial for me. My last scan shows after my 6 months of Chemo there is still about 10% of my body with Cancer. I did make it through at the speed of 50 on the Rituxan, but the bone pain and exhaustion has my doctor in Florida hesitant to continue the Rituxan as a maintinance. 

 

Hopefully the answers I get from Dr. Castillo will be more positive.

 

All the Best,

 

Howard

ShadyGuy
Posts: 426
Joined: Jan 2017

all we can do is keep on keeping on! All my best to you!

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hjarchower
Posts: 14
Joined: Feb 2018

Thanks Shady Guy, In remission, and doing great right now.

po18guy
Posts: 1009
Joined: Nov 2011

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

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

hjarchower's picture
hjarchower
Posts: 14
Joined: Feb 2018

Awesome info, thanks po18guy!

NannieOakley
Posts: 1
Joined: Apr 2018

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!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

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

 

.

po18guy
Posts: 1009
Joined: Nov 2011

Is a BTK (Bruton's Tyrosine Kinase) inhibitor. I am staring it in the face for possible use against transplant rejection issues (cGvHD). As to side effects, I would not put the cart before the horse. If you add up the potetial side effects of the drugs you have already received, the numbers would indicate that you would be hospitalized if still alive. Federal law rerquires all observed side effects to be reported, no matter how mild, infrequent, severe or common. 

Rather, balance the drug's potential effectiveness against what the cancer will do without treatment. That is the new default.

ctswanson
Posts: 1
Joined: Mar 2019

My husband was just diagnosed with WM.  He starts a chemo regimine of  Bendamustine/Rituxin this week.  He will be on a 28 day cycle for chemo.  We are hoping that the swelling in his legs and itching will diminish as it is quite painful. 

Any diet suggestions.  Right now everything tastes like metal and he is craving sugar.

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