I’ll Take "Better"

Well as I predicted… Summer has officially arrived and so did the lab results from my 10th Revlimid cycle. “Better” without supplements despite a strong correlation with supplements in the prior 5 cycles. So would you spend the $4 bucks a day on those 2 dozen pills? If a few numbers and a single point of measurement were all that was needed to define success or failure life would be a lot simpler. Heck we wouldn’t even need clinical trials at all. I do have to admit that I expected the trend to continue, but “Better” is better than worse even if not living up to my biases. 30% better is 50% better than 2 months ago – that almost looks like a trend.

The fireflies are out in force here in western NY. Before the farmer mows the hay field by the house driving into it is like magic. Right at eye level there is a sea of swimming lights in all directions. A bit of light no matter how small can bring a smile to my face.

Cycling Continues

I’m referring to my ad hoc clinical trial of one in which I cycle the use of curcumin. A bit of background info is probably needed so bear with me.

Back on September 9th of last year I started on 28 day Revlimid+Dex regimen (25 mg days 1-21 + 20 mg days 1, 8 & 15). After a 75% reduction in my protein expression in the first 3 cycles dex was stopped. A further 10% serum protein reduction was achieved in the next 2 cycles as well as improvements in antibody levels and lambda/kappa ratio. The 6th cycle saw a 10% increase. A supplement regimen was started at the beginning of the 7th cycle which consisted of C3 complex curcuminiods (8 gr), organic flax seed oil (1 gr) and EPA/DHA (860/580 mg). A 3% decrease in protein expression was seen.

Was the response just a normal fluctuation in expression or correlated with the supplementation? The synergistic effects of curcumin with bortezomib and thalidomide have been observed by Aggarwhal’s group at MD Anderson both in vitro and in a xenograft model in nude mice. (http://tinyurl.com/c2hlfx) So to address the question a cycling of supplementation vs. no supplementation was started. Relative to the previous cycle the trend is:

Cycle 7 (supplementation) 11% decrease

Cycle 8 (no supplementation) 45% increase

Cycle 9 (supplementation) 24% decrease

Cycle 10 (no supplementation) ???

I’ll let you know what happens this summer (June 22nd)…

Enjoy the rest of spring and cycle if you can! I’ll be waiting for a heat wave reading a good book by the fire at our camp.

Oregon Coast

Well it’s been another month. My M-spike (monoclonal protein expression) a little over doubled from 125 to 289 mg/24 hrs this cycle. I didn’t take any supplements… This level of expression is still quite low and could be just part of normal fluctuations. I expect the curcumin, flax & epa/dha oils, vitamins D & K2 and Revlimid to kick butt again this cycle.

We are vacationing on the Oregon coast this week. It is awesome as always. This afternoon we drove up to the top of Mt. Hebo. It was incredibly windy, cold and desolate. Not a soul to be found. So of course we took an inviting logging road instead of the boring paved road down. About a half hour later somewhere on the side of the mountain in the middle of the Siuslaw National Forest on a far less inviting narrow steep deeply rutted part we get a flat tire. Finding, extracting and installing the spare added nicely to the adventure. Then this pickup appears – on a Tuesday, coming towards us, up the mountain. This guy who acted like Mary Poppins announces he is here to feed the birds. Huh? We are on the side of a mountain on a logging road, what gives. “Oh watch, this place will be crawling with birds in a couple minutes.” Sure enough he was right. So much for the high winds and chill hunkering all the birds down as it had all day. It brings a smile to my soul recalling how this all just happened.

The Gray Jay, Perisoreus canadensis
May 6th, 2009, Mt. Hebo, Oregon

Munching Continues

The predators called in last month to munch away at those pesky little MM cells are smiling along with me from ear to ear. I learned a few hours ago that my Laughing Plasma Cell’s protein expression is a quarter of last months and about 6% of its peak 7 months ago.

If you’re bored here are some detials. We did a little curcumin experiment. During cycle 6 (February) I did not take any curcumin but continued other minor supplements. My protein expression was up slightly but considered stable. This past month, cycle 7, I resumed taking 8 grams of C3 Complex curcumin in the morning approximately 12 hours after taking Revlimid. My myeloma (monoclonal or M-Spike) protein expression went down over 75%. I love this note on my labs: “Serum Protein Expression: very small M-Spike visible on gel but too small to quantitate.” I’ll take too small to quantitate any day! Although the ratio of my light chain expression (Kappa/Lambda) is ten times lower than ‘normal’ it is the first time it has had a value in years. It usually just says < 0.01 and the Kappa expression is listed as < 0.5 mg/L. It is now in the normal range, 7 mg/L. As for my sense of welling being, believe it or not it is more closely related to my hemoglobin and hematocrit than anything else. They are just a tad low now. Of course being told that my elbow isn’t attached to my shoulder is a bit bothersome. I find it rather unbelievable, but it does hurt like hell if I rotate my forearm just right. Life is Good!

Munching MM

The good ol’ Rev is still chasing down and munching on those pesky little MM cells. There aren’t many of them left, but they sure are illusive little beasts. Their protein expression is still hovering around 10% of their peak value. A sort of stalemate. A battle of wills. I’m going to call in our newly adapted predator – Hope. She has plumped up a bit and is clearly ready for battle. Marley grumbles, groans and otherwise expresses her general dissatisfaction with being out maneuvered by a spry street smart younger sister. Besides she still eats like a little piglet and begs like she hasn’t been fed in days (despite the full bowl of organic wholesome chow 10 feet away). Maybe that tablespoon of milk I share in the morning when whitening my coffee has sealed my fate as the sharer of all food present. Marlee has been content to eat the same food year after year and never do the leg weeving, cabinet stretching meow of desperation and hunger. There is no possible humanitarian recourse besides obliging.

On a more practical note Revlimid has dried me out. I don’t wear solid colored shirts anymore. The snow drifts are fine if you like to ski. No quantity of gooey messy pillow ruining slim seems to have any effect. If I grease down and leave the house I have to be careful.

Bryl-creem, a little dab’ll do ya,
Use more, only if you dare,
But watch out,
The gals will all pursue ya,–
They’ll love to put their fingers through your hair.

Bryl-creem, a little dab’ll do ya,
Bryl-creem, you’ll look so debonair.
Bryl-creem, the gals will all pursue ya,
They’ll love to RUN their fingers through your hair.


Whole body slathering of love does improve my sense of wellbeing though. For that I am oh so grateful. The fish and flaxseed oil might be preventing total mummification. A fate I’d prefer to put off for a while longer.

Freezing Fog

According to the Weather Underground this morning we are experiencing: Freezing Fog with Active Advisories: Winter Storm Warning, Flood Warning, Special Weather Statement (US Severe Weather), Active Notice: Record Report, Public Information Statement

Just what is freezing fog? This looks like snow to me, but I guess if it is thick enough then you can call it freezing fog. Why not flaking fog? How about falling frozen fog with significant accumulation of fallen frozen fog particulate? Now not a mere 15 minutes later we have freezing sunshine.


I learned on Monday from the lead author of the early December presentation at ASH on GRN163L that yes indeed the Telomerase activity in the bulk tumor fraction of my bone marrow decreased by 78%. Yet another reason which I forgot to mention earlier to party tonight.

If you’re going to be able to look back on something and laugh about it, you might as well laugh about it now.” Marie Osmond

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Its Party Time

Marlee is no longer captivated by the scene changes in the Nutcracker Suite. I on the other hand am still in awe of my response to Rev/Dex. I am now in the 90% response range. Every single CBC, CMP, LDH, CRP… is in the normal range except a slight anemia, antibody suppression and an elevated lambda free light chain and related lambda/kappa ratio. (My M-spike is negligible)

The orthopedic surgeon said he didn’t need to see me again. “Go do some strength training on that arm.”

The oncologist said: “No More Dex!!”

It is definitely Party Time Tonight!

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Meet the Man’s

That would be Ginger and Brad Man (the “e” is silent in Bread). We made the front page photo scroll on Buffalo.com which is were I got the attached image

I guess that is not as dorky as the Man’s making out in the elevator. Today is another dex day so either I ramble with no point or just stop and move on to some other urgent project which I will abandon shortly after finding an even more urgent project. Oh ya I have a final exam that needs some work.

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Gingerbread

Sorry, but I don’t have any dorky pictures of Lu and I as the happy couple, The Man’s. That would be Ginger and Bread. What a wonderful event though. So wonderful in fact we are now the proud owners of a new house. It so reminded us of our summer place that we could not pass it up. A couple of students (I assume culinary artists!) started on it about a month ago. She filled the inside with goodies likes cakes, croissants, candles and an old fashioned cook stove. He constructed a cabin worthy of the harshest Buffalo winter storm. BTW if you click on the pictures they link to significantly larger versions there of.

It is bitter cold today. In the teens (-10 C) actually. There is a beautiful blanket of light fluffy snow. A perfect day to stay inside by the wood stove and work on my final exam.

BTW Geron presented interim results of the GRN163L trial at the American Society of Hematology meeting in San Francisco today. I’d like to conjecture that they talked about me as I received the dosing level of 4.8 mg/kg. It is pure conjecture though. There may have been several other patients at that level.

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Vitamin K2

I couldn’t help but be inspired by Margaret’s post “Purring against myeloma” to snuggle up with Marlee and ponder the health of my bones. I have had significant lytic lesion progression in the past year. One of which resulted in a broken humerus. All this despite Velcade, GRN163L, Zometa and Aredia. Vitamin K2 has recently attacted the attention of nutritionist with regard to bone and heart health, although clear randomized clinical trials have not yet been done. Vitamin K2 is not common in western diets and is therefore difficult to access its affect on bone health via population based studies. There is a correletion in Japanese studies between bone health and those that consume Vitamin K2 rich natto (a fermented soy product). “The reported outcomes of clinical trials, primarily from Japan, that have assessed the effect of MK-4 treatment on fracture risk and bone loss at the spine are
positive overall.” With my “first do no harm” motto and the knowledge that vitamin k2 toxicity is almost nonexistent adding K2 (along with the already present and monitored vitamin D) is a no brainer.

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