Riding The Wave – Multiple Myeloma

He's probably drinking coffee, but you get the idea!

“Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing.” – Willam James

Pat Killingsworth, an inspirational and long time Myeloma blogger and writer has written an article over at The Myeloma Beacon, where he writes regularly. The article is about the different supplements he takes in conjunction with his MM treatment regimen. He has successfully managed his myeloma without a SCT and has also written a book “Living with Multiple Myeloma”. In his article he mentions the Velcade/Green Tea Study and a bit of a flurry of comments occurred (including mine).

I just wanted to more thoroughly address this for you as it is alarming and concerning for many.

So here is the deal. Concentrated concoctions of Green Tea are what is the most concerning. The kind you buy in the liquid bottles where you put drops in some water and drink it. A cup of green tea from a tea bag or loose leaf, is not so alarming.

OK

No (24 hours surrounding infusion or subQ)

What has been unfortunate in this study is not that they have found something in a laboratory setting using meeces that we should all take a step back and look at, honestly and without bias. (Kudos to them for doing this!) But that we all need to take a look at the seemingly helpful, ‘unhurtful’ things we will throw into our bodies, often willie nilly, in large quantities. Whether you are on drugs or not, you should be more thoughtful about such things. Its a huge industry and many view it as Snake Oil run amok. (For those of us who use complimentary and alternative remedies for everything from a headache to a bee sting are alarmed as well because if it continues heading more and more in this direction the FDA will take it over and regulate it. We don’t want that either.) As with all things we buy, consumer beware, be cautious, do some checking. Having said that, the unfortunate thing I have found is that many doctors are now advising you not to take anything, ever, while you are on your chemo drugs. They have not read the actual study, but like many, are making decisions and assumptions from the headlines. I have read the paper, as best I can, not being a medico. I turn to stone when I do this, but often the abstract and the conclusions are written in a more consumable and understandable way.

I had the opportunity to have a discussion about this with a highly trained geneticist, practicing physician who is intimately connected with Velcade and research (as well as my dear doc friend Marilyn who has been my unofficial consultant through our process). What we discussed was the misleading aspects of the press reports on this study. She indicated the amount of concentrated levels needed to inhibit the Velcade were somewhat unrealistic for the average person “drinking” Green Tea. Except… in my view, there are people out there who will take massive amounts of these concentrated versions, so perhaps it is those folks who need to take a step back and rethink what they are injesting. As for the rest of us here is my advice.

Be cautious about anything you are taking during a 24 hour window of your Velcade infusion.

I indicated to this physician (and Doc Marilyn) that we abstain from ALL SUPPLEMENTS on Dave’s “Velcade Days”. She (and Doc Marilyn) was amazed and said that I was “brillant”! Aww shucks. The truth is, we did it this way because Dave just can’t keep it straight. What he can take and not take on those days. Dave is a creature of habit. If you break the habit, he gets very flustered. I didn’t want to deal with it (I’m lazy), constantly having to repeat it every Velcade Day. Even if I were to write it down, Dave would be asking me and messing it up. So while my apparent brilliance is momentarily delightful, it was done more out of practicality than genius. (Always remembering the ability and behaviors of your patient and what works best for them.)

Don at Myeloma Hope discussed this study with his Naturopath, who smartly contacted the authors of the study directly and inquired. She received the same information that we apply, a 24 hour window is advised. The rest of the time if you want to enjoy a cup of brewed Green Tea in the evening, no worries.

There has been inklings and some evidence that cucurmin enhances Velcade. At least those are the rumors coming out of the MD Anderson studies. But there is work to do on this. (There are real studies ongoing on curcumin see here! Thanks Margaret, as always!)

What about those of us on Revlimid or Thalidomide daily regimens, won’t this stuff inhibit these? There is no evidence that is true. Many, many patients are on these drugs regularly now for years and taking all sorts of supplements and engaging in complimentary therapies and they are doing well. I will tell you that Dave takes these drugs at night time and his supplements in the mornings. Maybe that helps, or not. Its all conjecture. Often what seems smart or to make sense can be obliterated in a scientific study. But then scientific studies can manipulate data, be poorly set up to prove or disprove a theory, have agendas and biases, be sponsored by those who benefit in a particular outcome and even god forbid, fraudulent. It can all be so overwhelming.

So my advice to you is, make sure your doctor is aware of the supplements you are taking. Try to get most of your nutritional boosts from your food. (Check my Book list for Patrick Quillin’s book). When taking your supplements, don’t get all crazy about it. You know the tortoise and the hare story? Be the tortoise. Slow, methodical, and thoughtful. These things can all be quite expensive too and as we delve into them you could be filling up your pill boxes overflowing with all the claims being made.

One of the best things you could do, is to see a certified nutritionist who works with cancer patients. Unfortunately for most of us, this is all out of pocket expenses. But if you want someone who knows their stuff and can guide you better, that is the best way.

In lieu of that, Don at Myeloma Hope and David Emerson at People Beating Cancer are both very open about their supplements and what they are taking and why. Along with Margaret (I love Margaret’s blog as she is very vigilant about putting up actual studies, not the headlines, and has no qualms about having direct conversations with the doctors about their research. She is one of the Myeloma Heroes, a long time Smoldering Survivor!).

I hope this helps to guide you a bit better about this very difficult subject. Dave and I do take supplements and some pretty wacky stuff too. Stuff you never heard of, real Snake Oil! (tongue and cheek) And the thing about it is, when you embark on this road you begin to throw everything at it, including the kitchen sink. So what is working? What is making the difference, if any? Good question. I don’t have an answer. Did Dave doing the Hypberbaric Oxygen treatment make a difference not just in his stem cell collection but perhaps in healing his bones? Don’t know. The HBOT docs would say “ABSOLUTELY!” The other docs would say, “its total crap!” Studies are ongoing. We just are happy that Dave’s lesions have all disappeared, his swiss cheese bones are no longer, and quite some time ago. Woohoo!

Just be smart about it folks. Use your head. Don’t go crazy, but don’t stop doing some basic, good health things to help you feel better and be stronger.

Do you know there are actually folks out online who are saying that boosting your immune system causes the myeloma to return? Are you kidding me? That seems like such a ridiculous claim that I can’t even imagine anyone would purposefully keep their immune system suppressed. Remember the Sergeant from “Hill Street Blues?”. His parting comment everyday in the morning muster before he dismissed his police officers, seems appropriate here…

“Let’s be careful out there!”

Tags: common sense, Cucurmin, Green Tea, postaweek2011, supplements, Velcade