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My International Readers Vent About Multiple Myeloma Research Issues

Home/Uncategorized/My International Readers Vent About Multiple Myeloma Research Issues

My International Readers Vent About Multiple Myeloma Research Issues

Yesterday’s post from Thomas in Germany resonated with another of our regular, international readers, Hanna from Toronto.

Since I know a number of you don’t go back and check-out reader’s comments about past articles, I wanted to share part of what Hanna said with you here:

Perhaps what we also need is for us, as a group, to submit a short proposal to Mr Gates and the group he formed. “The Giving Pledge is a campaign to encourage the wealthiest people in the United States to make a commitment to give most of their money to philanthropic causes. The campaign specifically targets billionaires and was made public in 2010 by the two wealthiest men in the the United States, billionaires Warren Buffett and Bill Gates.”

As we discussed online before Pat (and Margaret if you are reading this) what we need is research funds into natural cancer cures. We need expensive clinical trials and research not only to be brought to market for drugs, but more importantly, for brewer’s yeast, mushrooms (Ghouneum), Curcumin (Aggarwal), baking soda (Simoncini)and possibly others I’ve not yet heard of in my early struggles with MM.

More on point, Thomas raises some amazing ones. I am especially pleased to see that I’m not the only one that thinks the web site is archaic. My goodness. Where is all our money going??

These are only a few of Hanna’s comments.  Here is a link to more of her sincere, heart-felt rant.  Thanks, Hanna!

Lots to cover here… I’m not sure where to start.  How about something simple.  It seems like Thomas, Hanna and I all agree on one thing:  The International Myeloma Foundation’s (IMF) Website could be improved.

Thomas phrased it this way:  “We don’t need tons of paper from IMF, just a good website. (IMFs site is unstructured and packed with old information).”

Hanna wrote this:  “I am especially pleased to see that I’m not the only one that thinks the web site is archaic. My goodness. Where is all our money going??”

I strongly recommend the IMF’s Website on my new Helpful Information for Newly Diagnosed Patients link, which is located at the top of my homepage.  But I have been critical of the IMF’s site in the past, calling it “confusing and difficult to navigate.”

Are you listening, IMF?

OK.  What next?  How about re-visiting my Christmas Eve post which helped stoke our international reader’s ire:

Friday, December 24, 2010
All I Want For Christmas: A Message To Bill Gates & Warren Buffet

I recently saw a news story about how Bill Gates and Warren Buffet are crisscrossing the globe, meeting with fellow billionaires in an attempt to get them to commit part of their fortunes to help solve the world’s problems.

Wonderful! I have a suggestion—and it wouldn’t take billions: Finance independent research studies about the effectiveness of natural supplements in preventing or slowing cancer.

A specific example of this applies directly to multiple myeloma patients. As many of you know, curcumin, a natural occurring compound made from the spice, turmeric, has been long touted as a beneficial supplement—and possibly even a cure—for multiple myeloma.

Trouble is, most research studies are funded by drug companies. Since there isn’t any money in it for the large pharmaceuticals, most helpful curcumin studies—like many other natural alternatives to more expensive drugs—are never completed due to lack of funding.

What about anti-oxidants? Most of us have read about how great they are for us. Do they really help prevent cancer? Can using them help slow our multiple myeloma down after we are diagnosed?

Once we have some verifiable results about our nutritional options, wouldn’t it be helpful to have more information about how these supplements interact with our chemotherapy?

I understand why many oncologists hesitate to recommend nutritional supplements while a patient is undergoing chemotherapy—there isn’t any research confirming or debunking the theory that some supplements reduce the effectiveness of chemo. Everyone is just guessing.

Asking a patient to stay off supplements during chemotherapy may make sense while treating some other cancers. Although not ideal, not using nutritional supplements during a three to six month treatment window is understandable. Better safe than sorry.

But multiple myeloma isn’t like a lot of other cancers. Our treatments can be ongoing and often continue for many months or years. To deny our bodies vital nutrients when we need them most is not acceptable! Researchers need to help determine which interactions are harmful, and which might actually enhance the effectiveness of our treatment.

Maybe the FDA should require this type of data before they approve a new cancer drug.

Or maybe Bill and Warren could step-in and fund more of these studies, so doctors and their patients aren’t just guessing about which supplements work best and at which dose. Wouldn’t that be helpful?

Let me make a call. Does anyone have Bill or Warren’s phone number handy?

It seems clear there are a number of multiple myeloma patient needs which currently aren’t being met.  We all understand there probably isn’t a lot of profit in alternative medicine.  But imagine the savings for our over-burdened health care system.  I will continue to address Hanna’s comments over the weekend.

Feel good and keep smiling!  Pat