Saturday, December 29, 2007

Cat Captivation

We now have a totally captivating bird feeder for Marlee and Dylan to chatter about. It is like a captivating video game. The birds could care less about the cat stuck on the other side of the glass wall. I also learned it is almost impossible to get both a bright outside and dark inside to expose correctly. Flash, no flash, more F-stop, less.... I'm just not much of a photographer and when you give me a professional camera I seem to get worse not better.

Well I hope your not stuck on the "other" side of a glass wall or ceiling. Life's just to short for that shit. Peace-n-Love

Friday, December 28, 2007


As some of you might recall I got booted off the mapatumumab/Velcade trial a few weeks ago. An online preprint article published in JCI, TRAIL-R deficiency in mice promotes susceptibility to chronic inflammation and tumorigenesis seems to suggest that if one is deficient in TRIAL-R (a cell death-signally receptor) then an anti-TRIAL-R drug would not help matters. I of course am reading between the lines here, but the drug manufacturer is developing a test to screen for patients which over express TRIAL-R so as to target the biologic to those patients most likely to benefit from mapatumumab.

As we have learned genetic abnormalities in combination with any number of other stresses is the most likely path to cancer. The plethora of known and yet undiscovered genetic abnormalities which predispose one to a problem is daunting. Most MMers have a genetic abnormality impairing out ability to metabolize toxins. Add to that any number of other factors like a TRIAL-R deficiency and you have yet another of the countless ways to aid you in the manifestation of a disease.

So if you won the genetic lottery and happen to have no potential health related genetic abnormalities, are stunningly beautiful, amazingly intelligent, and have miraculously avoided environmental toxins, then I'm jealous. What can I say. You won the lottery and I didn't.

Happy New Year.

Sunday, December 23, 2007

It's a Small World

Have you ever noticed that despite a 1 in 6,000 chance of meeting another person with MM they seem to come out of the woodwork so to speak? My Mom emailed me yesterday about a 21 year survivor of MM she met. Yup you read correctly twenty one! Then there is the six degrees of separation phenomena published in Psychology Today and popularized by the 1990 play of the same name. Subsequently the internet has allowed the theory to verified to a rather high degree of precision. Wrap that up with Einstein's theory of relativity and poof you have not only a small world, but one in which no part is an island unto itself. It is an ever shrinking oh so small flat world.

It is the Season when I more often recall and reflect on just how thankful I am to have a world of friends, many I may never meet, who have touched me with their thoughts, prayers, wisdom and experiences. The countless thousands effecting a cure for what ails me. All those brave souls who went on clinical trials. My steadfast caregivers (Lu that's mainly you!) filling my life with joy, touching me with compassion and just being there by my side rain or shine.

May all your lives be blessed. Merry Christmas.

Wednesday, December 19, 2007


"Wo go" is not what you say to a spastic horse. Its a traditional Chinese medicine herb. As you can imagine when you are told "We can't cure what ails you but we have a pretty good idea you'll live longer if you try this rather nasty stuff we whipped up in the lab." you begin to look around for other brewers of less nasty concoctions with a bit of efficacy.

Dr. Min Li-Weber of the Division of Immunogenetics headed by Prof. Dr. Peter Krammer has been concentrating on pure substances from herbs that are used in traditional Chinese medicine. Investigating their ability to trigger apoptosis (cell death), the scientist has recently come across an interesting candidate: the substance wogonin, a plant flavone from Baikal skullcap. Wogonin causes apoptosis in leukemia cells in the culture dish, while it has virtually no damaging effect on healthy blood cells. Wogonin also led to reduced cancer growth in mice that had been transplanted human leukemia cells. [ref]

Wogonin increases the level of hydrogen peroxide inside the cancer cell leading to cell death. Hydrogen peroxide is one of my favorite disinfectants. Dispensing it on a selective cell by cell method is most appealing. Maybe Baikal skullcap will perform a two fold purpose, shielding my fragle skull and disinfecting my bone marrow. :-)

Tuesday, December 18, 2007


If you happen to live in (or drive through) suburbia USA this time of year you will know to what extreme decorating can be taken. Every town seems to have its notorious houses or in some cases streets. Just think if you would like to dedicate several months a year and a significant portion of your income you too could become a tourist attraction:
Ah the beauty of opulent over expression, OCD, and a love of electricity.

Instead I have a tiny 3 foot tree top (what I left behind will live...) from the back 40 decorated with colored rice lights. I find sanctuary in the simplicity. Then again there won't be any kids (or grandchildren) that need spoiling this year. :-)

Sunday, December 16, 2007

Let it Snow

Oh the weather outside is frightful,
But the fire is so delightful,
And since we've no place to go,
Let It Snow! Let It Snow! Let It Snow!

I just love the view out my bedroom window, especially on days like this. The old treadle sewing machine is slowing being buried in fluffy white stuff.

Saturday, December 15, 2007

Gingerbread Houses

I definitely had enough sugar today to blow away any anemia issues. You can't help licking your fingers, popping a M & M, and at least trying the egg nog. A bit of sing-along Christmas music, the children and their friends all came together leaving me with a big smile here at the end of the day. Lu gathered up the coolest construction candy ever this year. Most of it is totally disgusting, but it is awesome construction material. Tony mastered the frosting and brought the most wonderful coloring. We even had black frosting for the snowman's buttons. There is something that warms the soul when you spend a day laughing and being creative with people you love. It's got to be good for whatever ails me. :-)

Thursday, December 13, 2007

Sunny Environment

It just so happens that we (Buffalo) are getting our first real snow of the season. Backwash from the nasty weather that blasted the middle of the country a few days ago. I am sitting here looking at the puffy white stuff when I get this picture from my Mom on the Sunny Florida Gulf coast. I can wear shorts here by the wood stove, but that's it.

It is the fresh clean look that got me thinking about where or when I might have strayed into some ugly environmental toxin. Dr. Durie, chairman of the IMF, gave a presentation on the genetic finding from the myeloma DNA Bank on a Cure.

The study found that genetic pathways associated with the ability to neutralize environmental toxins are defective in patients with classic myeloma. "Identifying these genetic pathways was unexpected," said Brian G.M. Durie, M.D. "We were looking at bone biology and the SNPs associated with toxin metabolism fell into place. Now, working back through the gene pathways, we have a robust model of myeloma bone disease that may explain the epidemiological observations." [ref]

This is exciting news for my grand children. We may be able to identify those individuals most susceptible to environmental toxins and advise them of appropriate precautionary measures. Linking these finding to clinical therapies effecting a cure would really brighten my day.

Wednesday, December 12, 2007


I'm being mindful this evening. Take a deep breath and know I for one appreciate the time you spend reading my blog.

Peace be with you.

Tuesday, December 11, 2007

New GP

I regularly visit a fancy new state of the art cancer institute, Roswell Park. Next door is Buffalo General Hospital. A facility in every state from ancient to the Jetsons. The last time I was there was as a MRI research subject to test, calibrate and fine tune their brand new suite of MRI machines. They gave me a really cool CD of my head for my efforts. Unfortunately the clinic I visited was last updated in the 70's. Unfortunate in that it prejudiced my mood and expectations. Sorta gave me the creeps. I used lots of Purell. It then took about half of the hour plus that the doc spent with me to realize he was respectful, really listening, thinking and giving me good advise.

In short, recent RBS (restless body syndrome) is not because of sugar control issues and probably not because of drugs. How about spending too much time in a lousy bed because I'm fatigued with too much stress because I don't like having myeloma any more. Hmmm Well I'm sure you'll find out if the myriad of orders I got has any effect. A few hours after leaving the clinic I spent an hour with my therapist. I'm fixed now. All better. I wonder what shape I'll be in by this time tomorrow...

Monday, December 10, 2007

Core Beliefs

If you are like many folks dealt a cancer hand, a bit of self doubt and reflection are inevitable. Then of course there is the endless search for a cause. The daunting quest for remission. A veritable roller coaster of sorts. So if you'd like to live on a shaky foundation try taking a look at your core beliefs - you know the ones coming from your bones. Where you stand or how you perceive the world. Myeloma is a core belief type of disorder. There aren't very many folks so blessed with a reason to ever even look at their core beliefs. It's the blessing part I have trouble with at times. I'm off to sleep on that one. :-)

Sunday, December 09, 2007

Faulty Protein Disposal

I just loved the sound of this news article, "Mechanism Found For Faulty Protein Disposal" As you know I have a bit a faulty protein being spewed out by my laughing plasma cells. To add to the cool factor the research focused in on the retrotranslocons in the membrane of the cell's endoplasmic reticulum. It has Transformer like ring to it. My boy loved Transformers about 2 decades ago. They found the protein shredder for faulty proteins. There is a class of MM drugs, proteasome inhibitors, that gum up the shredder, clogging up the cell and killing it. The cell drowns in faulty protein. It gets even cooler though. There is a menagerie of chaperones watching for trouble makers that then become conspirators with the bullies if a protein screws up. Sounds like a junior high school dance on some alien Borg ship from Star Trek.

In addition to BiP and Herp, three other members of the menagerie, Derlin-1, p97 and Hrd 1 collaborate with Herp to extract defective proteins from the retrotranslocon so Herp can hand it over to the proteasome.

Need I say more! The sad part is if I didn't know the terms or names I looked them up and actually liked the article in Molecular Cell. I think I should go read a romance novel now.

Saturday, December 08, 2007

Stem Cells

There just happens to be a meeting in Atlanta, ASH - American Society of Hematology, where a large number of MM researchers and clinicians are spending the weekend. If you have a boat load of time you can read meeting abstracts until your brain melts. One of the hottest topics, that just happens to extend beyond haematopoietic stem cells, is the finding of either rare tissue stem cells or progenitor cells in other forms of cancer. The belief is that treating the cancer cells, instead of the drug resistant stem cells that may be the source of the cancer cells, could be why initial responsiveness followed by drug-resistant recurrences is commonly seen. My quest has always sought the illusive therapy that focuses on the stem cells. These therapies are now just leaving the lab. GRN163L does have myeloma stem cell activity which I find very encouraging. I am also touched that my good doc gave me his cell phone number and said call me after I get back from Atlanta. Hope he's not busy... :-)

Thursday, December 06, 2007

5% Memory Rule

I have a great team of caring and attentive cancer care providers. The most important of which is my primary Cancer Care Coordinator (CCC), Lu (who also happens to be my wife). If you read my last post you might be able to infer that Tuesday was pretty disappointing. I put a lot of time, energy and hope into my treatment. It didn't work - at all. It might even have made things worse. That sucks. All that being said, the good Dr. looks at me and says "You won't remember 5% of what has happened here, but stop and listen to this. It is the only thing that is important. Your doing great. Your healthy. You don't have to think about any of this until next year. It's my job to be ready for you when you come back. Now go home and have a great Holiday Season." He went on and mumbled something about MM progresses and regresses. This is normal... blah blah blah. Sorta like Charlie Brown's mom.

I have been playing that tune all day. I am so psyched to not have to deal with all the headaches of treatment and feeling like shit afterwards. Merry Christmas to me. Ya God. Thank you thank you thank you.

Tuesday, December 04, 2007


Yup that's right, no more nasty drugs until next year! No trip to the infusion clinic today! My plasma cells laughed at Velcade and had a party with mapatumumab (HGS1012). I was booted from the study due to "progressive disease". The indicator of distinction was the growth of the hole in my head from 2.2 to 3.5 cm in the 12 weeks I was on the study. I guess it's time to stop using it as an excuse for this mental drool you're reading.

Guess what I got to bring home with me today... the GRN163L clinical trial protocol. This is a single agent Phase I does escolation study with a weekly 2 hour infusion (and clinical trial related blood work, etc. etc. etc.) Although there is a relatively short history with GRN163L my impression after spending a considerable amount of time with the research nurse and oncologist was the side effects appear pretty tame and the potential efficacy being significant (at least for the CLL Trial). A single patient (out of about a dozen) experienced poor blood clotting ability (PT/INR).

There is no clinical MM efficacy to relay as the study has not yet recruited a single patient.

Monday, December 03, 2007

Medical Imaging

I happen to be making up a final exam today and was working on a question regarding image resolution, dynamic range and spatial frequency. As is often the case with me, I get easily distracted when doing something that is marginally captivating. (Sort of like the laundry and dishes)

I happen to be getting the standard skeletal surveys which are a poor indicator of disease response. For starters bone lesions don't get smaller if you have a great response. There is some evidence that bone regrowth will occur, but it is a very slow process if it does. I have had a couple bone marrow MRI's done over the course of the past 2 years. They have the added benefit of no ionizing radiation and the potential for accessing bone marrow involvement albeit with low precision. So were do I end up... looking for cutting edge myeloma imaging techniques. There is a group of researchers in Germany working on PET markers for MM. The standard PET marker basically measures glucose uptake which is supposed to be higher in tumors than healthy tissue. The trick with PET markers is to find one that is specific to what you want to image and has sufficient uptake that the scanner can actually see it. I think there is an imaging question for a bunch of mechanical engineers to be had here. Hee hee hee. If you cut through the big words it boils down to is there enough "light" and is everything else dark. Another group from Cambridge, UK, has developed an exciting imaging technique called magnetic resonance spectroscopy (MRS) which is specific to changes in lactate dehydrogenase (LDH). MMer's know all about LDH. I get mine tested twice a week during this clinical trial. A change in LDH level in myeloma cells can be correlated with the amount of cell death and can therefore provide very early feedback of the efficacy of a particular therapy.

Nobody wants to keep taking a drug that isn't working. I sure would like to know if what I am taking is working! I'll let you know tomorrow. :-)

Sunday, December 02, 2007

Peripheral Nerve Issues

There has been a Significant Discovery In Neurobiology By Vascular Biologists which might have implications for the multitude of cancer patients dealing with peripheral nerve issues. Although like so many discoveries of this nature we won't see therapeutic application of it for some time, but having a new key to the puzzle does give hope.

Lead by Professor Sussan Nourshargh the research reports on the previously unknown expression and function of a particular cell adhesion molecule, junctional adhesion molecule-C (JAM-C), in peripheral nerves. JAM-C, largely associated to date with inflammatory disorders, was found to play a critical role in maintaining the integrity and function of peripheral nerves by forming an integral part of the insulating sheath that surrounds these nerves - the myelin. [news, abstract]

Many of the myeloma therapies (and other cancer therapies as well) have peripheral nerve issues ranging from permanent debilitating damage to annoying sensory disruptions. The possibility that myelin sheath integrity could be enhanced by a JAM-C therapy thereby alleviating a nasty side effect is exciting news.
Embryonic stem cells derived from skin made the news this week also. [Cell, Science] The lead investigator gave as an example of potential therapy, nerve regeneration. Again stressing years (not decades) before any therapeutic use would be realized. My lingering question was if you can derive embryonic stem cells from skin cells how about hematopoietic stem cells (that don't produce dysfunctional B-cells)?

Saturday, December 01, 2007

Migrating Hematopoietic Stem Cells

If you ever wondered where or how your blood cells came to be or just what they were capable of doing you are not alone. There is no other stem cell that is more thoroughly studied (and understood?) than the blood stem cell. Unfortunately like most scientific inquisitions as you learn more about a phenomena the number of unknowns increases (exponentially by the way). Ockham's Razor is my less than successful attempt to keep a handle on my ever inquisitive mind. New research from the lab of Harvard Medical School professor of pathology Ulrich von Andrian, published in the November 30 edition of Cell, now suggests that these blood producing stem cells' biological role is far more versatile and dynamic than hanging out in the bone marrow and replenishing our blood and immune system cells when needed.

He and his colleagues have found that HSCs can travel from the bone marrow, through the blood system, and enter visceral organs where they perform reconnaissance missions in search of pathogenic invaders. Upon encountering an invader they immediately synthesize a defense, divide and mature, churning out new immune system cells such as dendritic cells and other leukocytes, right on the spot.

"This process changes the way we look at blood stem cells," says von Andrian. [ref]

As an example of how you can start from a simple press release for a local clinical trial targeting myeloma stem cells (using GRN163L) through the Cancer-Stem-Cells post to this little rant. :-) I just love learning more only to be humbled by more questions.

The Power of Electricity

Electricity sure is handy. Especially if you want to use a computer. Lu and I had a wonderful candle light dinner, scissor soup. Not wanting to wield a knife in poor light Lu cut up veggies over a big pot of broth with the kitchen scissors. It was glorious. We watched a stupid movie on my laptop all snuggled up in bed and fell asleep really early. It was a bit too clouding to see the NGC 1512 spiral galaxy, but dream we did.