Pat Killingsworth Pat Killingsworth

More about nutritional plan to help maximize performance of my RVD therapy

With Danny’s help, I wanted to do a follow-up to yesterday’s post about my nutritional and supplement plan for 2012.

Let’s start with a response to a comment and question that Holt, one of our regular readers, asked about yesterday:

  1. Holt Says-
    Wow, 6000 mg curcumin/day! Are you going to tell us how you and Danny determined the dosage?
  2. Danny’s extended response-

Holt-

We have backed off the curcumin dose to 4 grams (4000 mg) per day.


In truth, have no idea what an “optimal dose” of curcumin might be.

In the original curcumin-myeloma trials at MD Anderson, they conducted arms with 2, 4, 6, 8 and 12 grams of the supplement divided into two daily doses.  I split the difference and chose the center dose and have taken this for the last six months myself.
http://abstracts.hematologylibrary.org/cgi/content/abstract/110/11/1177

The Australian curcumin study used 4 grams a day:
http://clincancerres.aacrjournals.org/content/15/18/5917.abstract

Margaret Graziano takes 8 grams a day:
http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/my-curcumin-protocol/

On the other hand, the current Revlimid + curcumin maintenance clinical trial protocol at MD Anderson is 1 gram with Revlimid.

CT01269203?term=curcumin+lenalidomide&rank=1http://www.clinicaltrials.gov/ct2/show/N

Why bother with all this? This in vitro study shows that curcumin may be able to overcome resistance to Bortezomid and Thalidomide agents:
http://mct.aacrjournals.org/content/8/4/959.full

If true, that could be important for Pat.

I should mention here, that although Pat describes what he is doing, it is in no way, recommended for others without first consulting their oncologist.

Later in what I relate in my weekly column, I will provide justification for each of the items included in Pat’s protocol.

Still, it is important to realize that these items are not made as a blanket recommendation for anyone, nor are they intended to substitute for standard chemotherapy.

I do feel more comfortable with the dietary and exercise recommendations which I make in Pat’s blog. However, in Pat’s case, likely options at the moment are to move toward carfilzomib or pomalidomide or or other clinical trials using other agents (I am particularly enthused from what I see about elotuzumab). But he wants to hold off on those options for a time.

He has indicated he want to see how far things can go for him using RVD, so we are seeing if this combination of supplements, which I use, might be of help.

Can it help? May be a long shot, but we’re giving it a try.

And naturally, we are hoping for the best.

Let me jump-in here and make a few related points.  First, I did clear adding curcumin to my supplement list with my myeloma team at Moffitt.  I have not cleared using the other additions.

Probably not a good idea.  But I trust Danny’s research and know my team well.  Like a majority of oncology based clinicians, they seem ambivalent about all of this.

I feel comfortable with adding these new supplements to my list and plan to officially discuss their use and add them to my Moffitt cross-department supplement list when I meet there next month.

However, I did question Danny’s recommendation to add the anti-oxidant, resveratrol to my regimen.

My position has always been not to take concentrated forms of antioxidants while on chemotherapy.  Blueberries and whole foods–Yes!  Concentrated supplements, NO!

In doing research for one of our other nutritionally based sites, Help With Cancer.org, I have learned a chemotherapy patient who takes this type of supplement runs the risk of protecting the vary cancer cells the chemotherapy is trying to destroy.

However, Danny makes the great point that this only applies to more traditional, alkaloid-based forms of chemo like melphalan, Cytoxan and a number of other meds designed to shrink solid tumor-type cancers.

Which brings me to another issue I have with this protocol.

I’m a big “do it in moderation” guy.  So I don’t pile-on extra doses of vitamins and supplements.  I take conservative doses.

Now one could argue this doesn’t max-out possible benefits.  But one could also argue it doesn’t do any harm, either.

It’s just the way I “roll.”

So Danny’s plan is very aggressive by my standards–especially the dosing.

For one thing, my stomach is having trouble processing all of the extra pills and capsules.

I’m not sure if it is the ursolic acid or something else, but the first few days my stomach was in knots.

So I have done two things to improve the situation.

I have now split my dosing up into several different “handfuls,” and take three or four pills spread throughout the day.  That seems to help.

And like Danny mentioned earlier, I am cutting back the doses of curcumin–and a bit with several of the others–as well.

Three reasons:  First, my stomach is saying “too much!”  Second, we are only guessing about optimum dosing, so in keeping with my “moderate” approach to supplementation, I’m still not comfortable overdoing it.  Maybe I will increase doses with time.  And third, the cost.  I have just started shopping around for best prices, but this stuff is expensive!  Insurance doesn’t cover it, and I hadn’t budgeted for it.

You can spin that last point two ways, of course.  It does seem silly to worry about spending an extra $100 a month or so to help save my life.  But with no “proof,” questions about dosing and realities of budgeting, I believe that this is a real issue that we can explore on an ongoing basis.

I would like to thank Danny for taking so much interest in my therapy.  He even sent me a month’s supply of the supplements he recommended on the list so I could get started on time.

I’m looking forward to his next column.

In the meantime, please don’t forget to add lots of raw fruits and vegetables to your daily diet.  Researchers admit that there is nothing better than ingesting nutrients in their most complete and natural form.

They disagree about how much cooking destroys these benefits.

Can’t hurt to eat some raw carrots, celery, radishes, spinach, etc everyday, right?

Feel good and keep smiling!  Pat