Plumbers Tape

It has been over a year since I first tried MLN8237. A run of 16 months on a single agent is pretty amazing all in all. I take Curcumin C3 complex when not taking the study drug along with a few other complementary supplements just because I believe in them. At an IMF Patient and Family Seminar in Boca Ratan I learned that this drug does not preclude me from surgery like so many therapies do and was in fact encouraged to pursue my options with respect to reattaching my elbow to my shoulder.

Plumbers Tape

I am delighted to report that a short piece of plumbers tape, 8 dry wall screws and some putty have been successfully installed in my left humerus. No pain, ever (which is really weird), accompanied by rehab next to the Atlantic on Amelia Island have me smiling ear to ear. No more mal-union after 4 years of attempting to abandon all my southpaw tendencies.

Thanks to folks like my amazing wife, Margaret and so may others in the world wide MM support network I can confidently recommend regular slathering of Manuka honey on a healing wound, some boneset (Eupatorium perfoliatum), a wee Poke (Phytolacca americana) for a healing bone and plenty of curcumin for immune, inflammation and anti-MM support fits the "first do no harm" and most likely helps significantly.

A Great Blue Heron and a few Roseate Spoonbills enjoying the bountiful inter-coastal waters near Amelia Island, Florida

Holiday Cheer

It has been close to 9 months since I last felt like posting anything. This clinical trial has been relentless as so many are with all the testing and documentation. There is enough cancer in my life - I don't need to blog about it as well. In short I'm still bouncing around on MLN8237. Disease assessment (re-staging) is every 6 weeks (2 cycles). The astonishing 75% response after cycle 6 has held. My numbers fluctuate a lot which I can't correlate with anything in particular. The doubling of a marker after a 75% response is still well below baseline levels.

I can now cruise through the Holidays and that dreaded 6 year MM anniversary and hit the 1 year mark on this trial before my next assessment.

Happy Holidays :-)

Status Quo

It would be nice to say something like gone, vamoose, finished, cured, but alas I settle for stable. There was some rather modest bone improvement according to the radiologist who read the MRI but other than that - boring.
Aside from the sleepy feeling (and dopey and grumpy demeanor and sneezy fits) I'm happy the doc was not bashful and signed off on another 2 cycles and a restaging party to follow up with. Soon the magic mirror will reveal the fairest drug of all and we can all live happily ever after.

Laughing

Random Number: 8237

How is it that Millennium landed on number 8237 for the designation of the investigational drug I happen to be taking? How is it that the DNA mutation dice I rolled happened to spell myeloma? How is it that of the long list of just likely side effects, hair loss is the only one I've really noticed? (The low white cell counts though significant are not noticeable.) How would I know if my cognition is amiss? Why is it that perceived randomness is rarely actually random? I will chalk the latter up to ignorance of which I am masterful. The new found affinity with Uncle Fester might be clue. I'm not getting it though.
Lets hope that my mutant B-cells just happen to be expressing Aurora A Kinases and the MLN8237 is obliterating them because of it. A random mutation for which even Uncle Fester would be pleased. The plethora of fluids I'll leave behind tomorrow at the lab should help cure that ignorance. Stay tuned...

Aurora

Aurora, goddess of the dawn, renews herself every morning and flies across the sky, announcing the arrival of the sun. With the aid of MLN8237 She flies through my blood each morning selecting only those cells with aberrant expression of Aurora A kinases, disrupting their assembly of the mitotic spindle apparatus, disrupting chromosome segregation, and inhibiting myeloma cell proliferation. Technical musing that add to the mystique of the novel drug I'm testing. Although feeling drugged drags up all kinds of cancer sediment this dip in the treatment pond has been rather mild.

Every morning was a cheerful invitation

to make my life of equal simplicity,

and I may say innocence, with Nature herself.

I have been as sincere a worshipper of Aurora as the Greeks.

I got up early and bathed in the pond;

that was a religious exercise,

and one of the best things which I did.

Walden, Henry David Thoreau

A New Year

I passed without noticing the 6th anniversary of my first bone marrow aspirate. I got to put off yesterdays aspirate through no divine providence but the typical intricately complicated and rigid guidelines of my next clinical trial. All such inconveniences must be done within 3 days of starting the trial (Jan 4th). Monday will therefore be most engaging. I have to admit Tuesday albeit most likely boring is scary. I'd like to keep my hair and the food that I eat in my stomach.
On another thought the past 6 years have been the most transforming of my life. Not of course without a high cost mostly to those that love and support me. Change is rough at times but I think watching it is much more difficult than experiencing it. I can not know what others feel only bow in humility to their willingness to watch. To all of you I am thankful for yet another year to look forward to.

The VBiRD has Flown

The vultures  struck, plucked and flew away leaving behind minimal evidence of disease and I'm not even dead yet. On Monday after a summer of VBiRDing I am happy to say there were no serious complications, manageable (but significant) dexamethasone trauma and a response that makes it all worthwhile. Isn't it nice how quickly we forget the shit that was so dramatic when it was happening. The mind is a wonderful thing. I'm grinning from ear to ear, basking in the glory of a 8 week reprieve from all things myeloma. Yup no drugs, no pokes, no dex, no weekly infusions and no abuse of all things not aligned with my demented mind.

The semester started the week of my last dex dose (August 30th). Chaos and entropy rained in buckets with occasional flashes of lightening and claps of thunder. It is extremely hard to show up to class prepared when staying on task is next to impossible. At least I had plenty to say, ample energy to say it with and no real need to be coherent, comprehensible or cognizant - there were (and still are) 360 rolling eyes staring back at me. Who is this whack job and why is this a required course? At least I find it entertaining. Lets hope there is  a bit of meaningful learning going on.

On the boring MM details front: there is no quantifiable indicative protein spilling out of my kidneys, no quantifiable M-spike, not quite normal levels of my malformed indicator of importance, lambda free light chains, totally normal blood chemistry including beta-2, LDH & CRP, my first normal non-anemic hemoglobin in over 6 years, and hopefully quickly recovering disease attacking antibody expression.

To counter the 4 months of twice daily Biaxin I started making my own kefir (pronounced keh f é-er [as in keh in kettle, and fear]) using organic grains containing over 50 pro-biotic bacteria strains and organic milk I added several isolated human strains from Metagenics to the culture as well. There is no regulation of the word probiotic so the implication that it is pro-health for humans is a fallacy. The back story being that just because they contain an acid-loving milk-bacterium (like a strain of lactobacillus acidophilus) doesn't mean the particular bacteria strain promotes healthy digestion for humans. Sort of like not all cars are created equal. Porsche' do not drive like Yugo's. We will be hearing more about how much the bacteria in our digestive track effects our well being as the studies investigating the links between obesity and malnutrition to digestive bacteria are completed in the coming months and years.

I never found a good counter to dex (Valium or Xanex & Marinol worked the best). Curcumin is synergistic with Velcade (so I took it). Neem has had profound efficacy for some with CLL (so I took it). Resveratrol (pronounced in my world 'reverse it all') has clinically documented anti MM properties (so I took it). Vitamin D, B12, Calcium & Magnisium were all recommended by my oncologist (so I took em). That about covers all the boring MM details.

The most important part being I'm psyched about normalcy. A term rarely applied by others to me but with profound emotional significance at least within my own head.

Still laughing at those plasma cells!