I met guest columnist and fellow multiple myeloma patient Danny Parker just over a year ago at ASH in Orlando, Florida.
Danny had just been diagnosed with high risk disease and was preparing to undergo a stem cell transplant.
We spent quite a bit of time together that evening. It didn’t take long to realize Danny was a thoughtful person, determined to find a way to stack the odds in his favor.
We kept in touch regularly all year. I followed Danny’s story with great interest as he set-out to learn everything he could about cancer related nutrition.
A researcher by trade, Danny began to realize the key to all of this might be finding foods and supplements which enhance the way anti-myeloma drugs work–and avoiding things which interfere with their performance.
Despite his high risk categorization, Danny’s auto SCT worked well for him. He is currently on maintenance therapy and has achieved a complete response (CR).
How much has eating the right things at the right times helped his therapy? It’s hard to tell. But as soon as he heard about my disappointing auto SCT results this summer, Danny went back to work to design a custom built nutritional program to help maximize the performance of my RVD (Revlimid, Velcade and dexamethazone) post-SCT consolidation therapy.
It takes a really great friend to do something like that, don’t you think?
Working together, we agreed that I should wait until my second full six week RVD cycle was complete before starting the program.
We reasoned it would be best to establish a trend prior to starting our unofficial nutritional experiment.
So although I did start using curcumin from the start, I held off taking any of the other supplements Danny recommended until last week.
December 28th was to be the day I began the program.
After learning how grim the prognosis could be for multiple myeloma patients who become refractory to both Revlimid and Velcade at ASH, our goal was to maximize the performance of my RVD therapy–and hopefully extend the working life of one or both of the novel therapy agents involved.
Let me share the details of Danny’s plan with you now:
Pat’s January 2012 Supplement Schedule
Morning upon waking with generous water and just before the meal (if Velcade day, delay until 30 minutes before Velcade infusion)
Fish Oil supplement (1000 mg)
Six 500 mg curcumin capsules
1 DHEA (50 mg)
2 papain (papaya enzyme tablets)If a Velcade day: 3 Ursolic acid capsules with water after infusion
Before lunch:
Resveratrol with Pterostilbene (1 capsule)
Two 500 mg curcumin capsulesIf tired and lackluster in the afternoon:
1 sub-lingual B-12, B6 tabletJust before dinner:
Resveratrol with Pterostilbene (1 capsule)Just before bed (all taken together with generous water):
3 Ursolic acid capsules (Ursobolic)
4 500 mg curcumin
Revlimid
1 Fish oil supplement capsule (1000 mg)
aspirin (I like to take the aspirin 30 minutes before the Revlimid to give it time to thin the blood a little)If a Velcade and/or Dex day, add 1 Magnolia extract capsule to the above midnight mix
Also, if the second Dex day, have mylanta handy for nighttime gastric distress
Medicinal foods:
One of the following each day:
- raw sliced radish (salad or on sandwich)
- raw broccoli
- raw watercress (salad or on a sandwich)
- cabbageAnd try to have one of the following each day too:
- Apple with skin
- Fresh basil or pesto
- Cranberries
- Prunes (good on Velcade days to help with regularity)Avoid:
-Asparagus.
-Heavy sugar, particularly on Dex days
-Any supplements with Glucosamine, hyaluronic acid. Avoid EGCG or green tea on day of and day after Velcade.
-Also, it seems wise to avoid Glutamine for similar reasons: helps your stomach, but may also help MM cells avoid chemo and/or survive longer
I will share my specific thoughts about all of this–along with an update about how it is all going so far–tomorrow.
Until then, feel good, keep smiling and remember to eat lots of raw fruits and vegetables everyday! Pat
January 4th, 2012 at 8:13 pm
Wow, 6000 mg curcumin/day! Are you going to tell us how you and Danny determined the dosage?
January 4th, 2012 at 9:01 pm
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.
http://www.clinicaltrials.gov/ct2/show/NCT01269203?term=curcumin+lenalidomide&rank=1
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.
January 4th, 2012 at 9:58 pm
Hi Pat, I have read many of your post and would like to thank you for all you do for the people suffering with this terrible disease. I was diagnosed in June of 2011.
I was wondering where you found information on avoiding glutamine. I and several others have been using glutamine to reduce PN from the velcade. Using it for PN is not from a study, just from other patients who told my infusion RN about it. It does seem to help however if you know of published info that it is to be avoided then I will certainly stop and let the RN know as well
Thanks , Jim Turentine
January 5th, 2012 at 10:32 am
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.
Pat and I try and explain all of this in Thursday’s post. Tune-in and see
what you think… Danny and Pat
January 5th, 2012 at 10:35 am
Hi Holt,
I’m interested in hearing the reasoning for everything as well. Many people I’ve read about taking curcumin are anywhere from 1g per day all the way up to 8g per day (8000mg) and even beyond. Most seem to take in a single bolus on an empty stomach but I can see both sides of the coin (extreme hit vs. maintaining a constant level similar to an antibiotic regimen).
What I’m also very interested is the cost per month to supply all of these supplements (medicinal foods can be excluded). I know from my limited research the costs can get pretty high once you start dealing with higher dosages and multiple supplements! Yes in comparison to the Velcade/Dex/Revlimid it’s peanuts, but those peanuts are paid for by insurance and I’m sure these supplements are out of pocket.
Waiting in anticipation…..
January 5th, 2012 at 12:26 pm
These are exactly the type of questions we want to try and answer. Stay tuned!
January 5th, 2012 at 6:28 pm
Can I ask why asparagus is to be avoided? I love it and eat it regularly.
January 5th, 2012 at 6:51 pm
I’m running something about that (complete with links, of course) tomorrow…
January 5th, 2012 at 7:00 pm
Hi Nick,
I love asparagus too, and my caution may be over doing it. So eat asparagus if you want. But here you have what I know:
Asparagus contains the amino acid L-Asparagine (responsible for the curious smell of urine after ingesting asparagus) which myeloma cells need to scavenge as– unlike healthy cells– they cannot manufacture their own.
There is at least one Phase II clinical trial underway at the Myeloma Research Center at the Cleveland Clinic that uses L-Asparaginase (an anti-Asparagine enzyme) to reduce the available asparagine levels in the body to induce myeloma cell apoptosis:
https://www.clevelandclinic.org/myeloma/pegasp.htm
From that website: “L-Asparaginase is an enzyme that depletes L-Asparagine “an important nutrient for cancer cells resulting in cancer cell starvation and death. The drug used in this regimen ( PEG L-Asparaginase, ONCOSPAR®) is approved by the Food and Drug Administration (FDA) and is commercially available.”
While, I am not advocating self-medication with L-Asparaginase (which can have serious side effects), it might be prudent to simply reduce L-Asparagine in the diet, of which asparagus is a concentrated source:
http://en.wikipedia.org/wiki/Asparagine
While reducing Asparagine in the foods may not translate into reducing that available in the body, I err on the side of caution. No reason to help those plasma cells– even possibly.
Throw them an anchor.