Friday, December 11, 2009
So why do I ponder, toss, turn and toil? That is the nature of still needing a bit of work to do before total enlightenment. In the mean time I am honored to finally be able to justify all this obsessive compulsive myeloma info gathering I've done over the last 4 years. Of course he is not particularly interested in it, but that just means I don't have long boring conversations with him. I secretly record every number, ask leading questions and obsess about their significance. (Insanely persisting in the same behavior over and over again expecting a different result every time.) It is hard to believe that it has been 4 years. I'm in a different shape compared to 4 years ago, but then that is in large part because I'm inherently lazy. My left forearm is still not attached to my left shoulder so that means I don't do shit and I have become round. A new shape.
I smile tons and life is grand. Happy Holidays!
Saturday, October 24, 2009
It wasn't awesome enough for me to not lean on my elbow though. One of the not-quite-dead-yet offended green peppers, egged on by the spring mix, lashed out and snapped my humerus in the exact same spot it broke last year. Of course there wasn't but a thin egg shell of bone there. The wonderful titanium spike held its ground and fought off the assault. I promptly crushed and swallowed the out of line greens while Lu went and paved my way back onto the docs schedule.
This all happened about an hour after learning from the doc that stable doesn't mean dormant and scheduling a bone marrow MRI. Fourteen cycles of stable had instilled a bit of complacency. My guard was so far down that a bowl of veggies kicked my ass. It turns out I might be mutating into a nonsecretory myelomechanisian (that's a new word - meaning a mechanical engineer with myeloma who does not secrete protein for convenient monitoring of his tumor burden).
I'm on a strictly meat, bean, grain and dairy diet now due to a phobia of violent vegetables. Oh the joys of myeloma are beyond the imagination of mere mortals.
Sunday, August 30, 2009
There was a fortuitous clerical error that caused last month's blood work to be missing the MM indicators. This month's blood work was postponed for an extra couple weeks because I didn't want to screw up my waltz. Skipping a few beats is one of my fortes.
About a month ago a colleague chiseled a couple holes in one of my vertebrae, inflated it back up to size with a balloon and then filled it with this stuff that resembled nail polish. Then I went out for lunch and haven't looked back since. Our mattress apparently was not the cause of my back pain - the pain was gone the next morning never to return.
School starts tomorrow so visiting the oncologist will just add an extra beat to what promises to be a highly syncopated mambo. (BTW I truly suck at quick Latin dances).
The Myeloma Beacon published a short Patient Perspective about me that references this blog so an update was in order. If this is first time you have visited my blog welcome.
Tuesday, June 23, 2009
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.
Wednesday, June 03, 2009
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.
Tuesday, May 05, 2009
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.
May 6th, 2009, Mt. Hebo, Oregon
Monday, March 30, 2009
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!
Thursday, March 05, 2009
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.
Friday, January 30, 2009
Hope now smells like she just got home from the salon, but is still clearing some of the under the porch dust from her sinuses. A nice juxtaposition. No AIDs, Leukemia, fleas or parasites, just under weight and ever so slightly frost bitten.
Our family has a "Bob" cat theme with a Dylan, Marley and now Hope. Bob Hope lived to 100 so some of that fortitude must have been passed on to our Hope (or at least that is hopefully true).
Sunday, January 18, 2009
Yes that would be us... you're on this voyage also or you wouldn't be reading this. Hows about a ship even smaller than the one Raquel Welch got shrunk into but plenty exciting all the same, probably revolutionary and certainly awe inspiring. I stumbled across a ScienceDaily (2009-01-16) article: Fantastic Voyage: Medical 'Mini-submarine' Invented To Blast Diseased Cells In The Body
Scientists developed a medical "mini-submarine" to blast diseased cells in the body. The blueprints for the submarine and a map of its proposed maiden voyage were developed earlier this year. Now the scientists will build and test-run the actual "machine" in human bodies.The lead scientist, Dr. Peer, has some goals that resonate.
We are particularly interested in
1. Identifying key genes responsible for pluripotent hematopoietic stem cells self-renewal properties.
2. Studying the role of cell cycle regulators in proliferation, migration, and cytokine production in lymphocytes, macrophages and dendritic cells during inflammatory bowel diseases and rheumatoid arthritis .
3. Developing and studying novel approaches to target cancer stem cells.
4. Harnessing siRNAs and miRNAs as novel tools for drug discovery and for therapeutic applications.
Let hope his voyage is fantastic, incredible and highly relevant to what ails me.