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

TRIAL-R

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

Wogo

"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

Decorating

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

Mindfulness

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. http://www.hematology.org/ 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

Booted

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 beating-myeloma.org 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.

Thursday, November 29, 2007

Immune Function and Meditation

I went on a quick search for clinical studies of mindfulness-based stress reduction with quantitative measures of immune function. It is probably not surprising that if you have less stress your immune system will be more effective. A group of people enrolled in a MBSR program responded to a flu vaccine with higher antibody expression than the control group (the poor soles that got wait listed for enrollment in the next MBSR program). [ref] There is also evidence that plasma lactate levels are reduced as well as a significant myeloma prognostic indicator the acetylcholinesterase gene (ACE). [ref]

Some food for thought before meditating...

Wednesday, November 28, 2007

Orchids

I saw an Orchid today at a friends house that has been in unblemished bloom for several months. I did a quick look and soon realized that there is an amazing number of Orchids in our world. So thanks Barb for the uniqueness of both the setting, but most importantly the stretching and yoga that helped immensely with the muscle aches and tension that seems to come along with Velcade. I'm going to go back next week for sure.

Now for some mindfulness-based stress reduction!

Tuesday, November 27, 2007

Surveying


I bet I wasn't in my seat a minute before being summoned to have my skeleton surveyed. How cool is that. Twenty five x-rays all in slightly awkward poses. Deep breath, hold. Exhale, hold. Pray. Toes in. Palms up. yada yada yada. I promptly went to work and simply glowed for the rest of the day. That "Oh gee, you look sort of fluorescent. What's up with that." "I'm fine just don't hang out in my office very long."

Oh yea and there is a hole in my head.

Monday, November 26, 2007

Trial Response

I get to go in for my second battery of clinical trial response tests in the morning. It is actually trivial, a bunch of blood and few dozen x-rays. Having a friend, Betsy, along for the ride will make it all the more enjoyable. Unfortunately I'll have to wait a week to learn anything. I got home really late today and Lu and I are going to watch a movie.

Sunday, November 25, 2007

Mind Body Practices & Stress

I try to keep this blog lite and humerus. It certainly helps my level of stress. Here is a rant that is lite on the humor...

There is a ton of scientific data demonstrating that the chemical messengers coming from our brain cells carry messages to the immune cells. The reverse is also true. Our immune cells release messenger molecules which the nervous system uses to provide feedback information to the brain or other organ systems. Dr. David Simon likes to use the phrase, "Our immune cells are eavesdropping on our internal conversation." If this is indeed the case what can one do to enhance this internal dialog to strengthen our immune system.

Diet: Remember the phrase "You are what you eat." I believe there are many more levels to that than nutritional. How was what you are eating created? Was it mass produced and then slaughtered ruthlessly or grown by a local farmer who shares your values? What you consume effects the whole planet as well as your body. I call it mindful munching. There are several MM bloggers seriously minding their munching. I just read a pretty convincing article "Surviving Against All Odds: Analysis of 6 Case Studies of Patients With Cancer Who Followed the Gerson Therapy" Gerson therapy is an example of extremely mindful munching. This review clearly implicates a connection between what we eat and tumor progression. Case 4 was a remotely related malignancy, non-Hodgkin lymphoma, which was graded at stage IIIa in 1999 and as of August 2001 has been judged free of disease.

Meditation: Mindfulness-based stress reduction (MBSR) is the most frequently found term in the medical literature relating to "meditation" and cancer. I could find no articles in which negative efficacy was attributed to cancer patients enrolled in a MBSR. Although very few well controlled studies have been done the literature reviews [1, 2] place the techniques in a favorable light suggesting potential benefit in the oncology setting. It is my belief that quieting the mind on a regular basis will send calming signals to the immune system. On that note I guess emotional toxins probably lead to physical toxicity as well.

Thats enough for one day don't you think?

Saturday, November 24, 2007

Peekaboo Where are You?

Marlee was upset that she couldn't Skype her distant cousins in Italy, Peekaboo, Priscilla, Puzzola & P???. When Margaret gets Skype up and running, Marlee wants to be the first to make contact. The chillins got to talk with Gramma in Oregon and that made her very jealous, so she put on her prissy Mar-LEE Anne attitude and sulked in front of the Skype camera until the heat of the wood stove thawed her resolve.

Friday, November 23, 2007

Keeping an Open Mind

My oncologist (and I) are of the belief that the likelyhood a single agent being the magic bullet for what ails me it slim to none. That being said I concur with several other blogger's throw everything (including the kitchen sink) at it. I.e. Don's Program. As you will quickly see the stamina and discipline Don has can be awe inspiring. So to not let that induce any stress I realized as I was again overeating the day after Thanksgiving while sitting in front of nice crackling fire after a quick event free dose of hand candy that fungus from my firewood just might be helping. Chaetocin, a small-molecule natural product produced by wood fungi, has shown promising anti-myeloma effects. There are currently several chemicals that are structurally similar to this in clinical or pre-clinical trial for myeloma. I guess keeping an open mind and not letting a little mold, fungus or other weird stuff get you down is important.

Chaetocin: a promising new antimyeloma agent with in vitro and in vivo activity mediated via imposition of oxidative stress,

Thomas H. Huxley
"The great tragedy of Science - the slaying of a beautiful hypothesis by an ugly fact."

Thursday, November 22, 2007

Gobble Gobble

I am oh so thankful for each and every one of you. Thank you for your comments and encouragement. Your love and prayers make a difference. I truly appreciate your presence.

Happy Thanksgiving.

Wednesday, November 21, 2007

NOXA

Noxa is Latin for damage. In the molecular biology world it refers to a protein that promotes cell death (pro-apoptotic). The wonderful drug I take screws around with the Noxa levels (hopefully just in the myeloma cells). A few researchers at the University of Michigan Comprehensive Cancer Center (as well as numerous others) are working on enhancing the NOXA effects of Velcade (bortezomib).

"Now we can rationally design drugs that enhance bortezomib's action and favor NOXA production," she says. "Improvements might make it possible to give lower doses of the drug for a shorter time." [Medical News Today]

I for one would like to take significantly less bortezomib. It feels like there is a bit too much programed cell death going on in my muscles (and head.) The UM study focused on melanoma which I should now have a much lower chance of ever developing. Ye ha.

If the folks at
MIT could just Remote-Control a few billion Nanoparticles to Deliver Drugs Directly Into my laughing plasma cells I'd be all set.

Tuesday, November 20, 2007

Stress Hormone

It certainly isn't a surprise that stress might have an impact on ones health. It is interesting that someone looked at the effect of a stress hormone, norepinephrine, on myeloma cell lines. The early disease stage cell line responded strongly to the hormone. The implication proposed was that the hormone stimulated the production of new blood vessel growth (up regulation of VEGF) which is needed for the proliferation of the malignancy.


The researchers believe that blocking these receptors would slow the process of the growth of more blood vessel to the tumor, delaying disease progression and perhaps allowing treatments to be more effective. Widely used “beta-blocker” drugs now prescribed for high blood pressure work by blocking these same particular cell surface receptors, Yang said.

I will spare you any conjecture from these finding. If you didn't agree with me it might be stressful. :-)

-- source --
Stress Hormone can Speed Cancer, By: Rick Nauert, Ph.D. Senior News Editor, Reviewed by: John M. Grohol, Psy.D. on November 20, 2007, http://psychcentral.com

Monday, November 19, 2007

Antibodies

I find it amazing that we have an immune system that produces around 10 billion different antibodies, each capable of neutralizing a specific nasty (antigen) like the measles virus or that neurotoxin tetanaspasmin which causes Tetanus. These antibodies are produced by a particular lymphocyte (white blood cell) called an activated B cell or plasma cell. Any antigen that gets into our blood or lymph fluids is combated by a B cell produced army. If we have never encountered a particular antigen, like this years flu, before naїve B cells proliferate to form a new battalion of soldiers. Most of the soldiers are immediately activated as plasma cells which shoot a very unique antibody capable of neutralizing the invader. When they have won the battle the plasma cells are discharged and quickly die off. The top brass with a memory of the enemy can persist for a very long time (up to a whole lifetime) and will quickly recognize and neutralize the enemy if we ever encounter it again. Each of us has an ever vigilant constantly patrolling army of naїve and battle seasoned memory B cells.

If after the battle is won those discharged plasma cells don't bugger off and die you have some form of myeloma. Lets hope it is a benign manifestation of no significance (like MGUS). If you have a bunch of confused disorientated and delusional top brass (like the Bush administration) they may be activating plasma cells without an enemy. The plasma cells keep fighting, shooting blanks (antibodies specific to an invader that doesn't exist). Things can get really out of control. The army can get so bloated and out of control that they start crowding out everything else in the environment (the bone marrow), send erroneous signals to the rest of immune system and plug up other systems (like the kidneys) with useless antibodies.

In my case one of the things my intoxicated laughing plasma cells are doing is signally the rest of my immunity system to shut down. "Don't bother waking up, sleep in, everything is taken care of." All my useful fighters (immunoglobulins) are slowly being lulled into submission. Here is a graph of my immunoglobulin expression since this out of control army was found back at the end of 2005. There are now about 10 times fewer immunoglobulins than there should be. That is a good incentive to be neurotic about what I expose my self to.

Sunday, November 18, 2007

I Like Graphs

So I graphed everything I think of today. Lu thinks they are too hard to understand. Too much clutter. I agree, but still find them exciting (no comment!). Margaret explained the Bence Jones urine protein test today which for my wonderfully weird myeloma needs a bit of interpretation. A normal monoclonal protein is composed of two types of smaller molecules, one called a heavy chain and the other called a light chain. You may have heard of the heavy chain immunoglobulins, IgG, IgA, IgM... (mine are severely depressed.) The light chain portion is referred to as either kappa or lambda. The heavy and light chains are produced separately within the plasma cell and are then assembled to form a whole immunoglobulin. Normal healthy folks produce fully functional pathogen fighting warriors. When the light chains are attached to the heavy chains, the light chains are referred to as bound light chains. However, when the light chains are not attached to the heavy chains, they are called free light chains.

My laughing plasma cells partied to much and no longer know how to make the heavy part. They spew nothing but unbound free light chains. To add insult to injury the little bastards are very aggressive. Frits van Rhee et al published a paper a few months back in the journal Blood titled "High Serum Free-Light Chain Levels and Their Rapid Reduction in Response to Therapy Define an Aggressive Multiple Myeloma Subtype with Poor Prognosis". To the careful eye you will see in the graph below that my lambda light chain level responded in the first cycle of Thal/Dex and then promptly started ignoring the drugs. I wish Frits had published his paper back in February of 2006. I would have stopped taking Thal/dex after a couple months. I am anxiously awaiting the next free light chain (FLC) results to see if Velcade and the TRM-1 antibody turns the lights out on my plasma cell party.

Friday, November 16, 2007

Speed Record

Roswell broke a speed record today. In and out in an hour. I don't think I've ever spent an hour on the can, but if this trend keeps up there won't be any worrying going on either. On Friday evenings the place is dead. No backups anywhere. I like deserted.
To average all things out we went to Chesters (Cajun) for dinner and waited forever for a table. We decided to not go there on Fridays last week. Brain Fart. Great food and friends are the ultimate anesthetic. I probably won't remember how long the wait was the next time they call either.
Velcade does a nice job of screwing with platelet counts. During treatment they drop precipitously and then pop back up during the week off. My RBC (red blood cell count) is unfortunately steadily dropping. I have to wait a couple more weeks to see the important markers.

Thursday, November 15, 2007

Train Wreck

As you might suspect most appropriately nasty chemo drugs have a list of side effects about a mile long. I mentioned a few of the more exciting ones a while back of which I am happy to report I have none. I also mentioned that 13 is a most unlucky number. Tuesday the 13th, the 13th stick, has proven to be a real stickler. I got the joint and muscle pain restless body syndrome. Sort of a mild flu without the fever and other nasties.
I am most thankful for 10 weeks of bliss. A few short walks around the infusion clinic and I feel like a million bucks. Boy do I have a great life. In fact I'll kick some ass on the tennis court in the morning. Teach that little yellow ball a lesson or two.

Tuesday, November 13, 2007

Sticky Day

No it is not hot and humid in Buffalo. Rather 13 is an unlucky number. For the first time in 13 sticks my hand candy (chemo) nurse gave up after two unsuccessful sticks. She had to bring in a pro (a nurse with more than 2 months experience). The stick is no big deal, but the dig after the stick was most unpleasant.

I am working on reducing this whole ordeal to the level of a bowel movement. Something I just do. I never remember the last one or wake up at night worrying about the next one. On rare occasion they are a pain in the ass. More often than not they just happen without a conscious thought.

Monday, November 12, 2007

SAD

"An extreme form of seasonality is manifested as the clinical syndrome of seasonal affective disorder (SAD) with carbohydrate craving, hypersomnia, lethargy,and..." [ref] So now I know why comfort food needs to be loaded with carbs, tastes best in the winter and that I should figure out how to work from the Caribbean from October to April. As a counter measure until I figure the last part I take Vitamin D3. Along with it the team of experts sucks plenty of blood (a couple times a week) to make sure I'm not screwing anything up.

Combine SAD with hot flashes and you get the 5 dwarfs: Weepy, Piggy, Bloaty, Bitchy and Crampy. Two of the dwarfs, Horny and Red-Tide are in the Caribbean.

Sunday, November 04, 2007

Crazy Sexy Myeloma

My brother-in-law sent me a DVD of The Learning Channel's, Crazy Sexy Cancer. It is a video documentary of Kris Carr's adventure which started on Valentine's Day 2003, when she was diagnosed with a rare vascular cancer. Weeks later, she began filming her story. Although I get a bit jealous at times of her seeming unlimited resources to experiment with funky complementary healing modalities I find her message sincere, informative and supportive. She has a blog, http://crazysexycancer.blogspot.com/, chuck full of useful info about her journey. One of the women on the show, Jackie Farry, was diagnosed with multiple myeloma in the winter of 2003, while on the road with one of her bands. With little insurance, no work and a pile of medical bills, she organized the "F**k Cancer Benefit Concert and Raffle" and has a nice "F**k Cancer" hat for sale. If you don't know the meaning of "F**k" here is a nice YouTube explanation.

My baby boy turned 26 yesterday. Yup I'm a proud Dad. I'm still reminiscing of the pure ecstasy brought on by a gluten free chocolate cupcake.

Wednesday, October 31, 2007

Lot-O-Numbers


So it took an extra week for the lab techs to determine they were "Unable to Quantitate" my M-spike. Seeings how I started with "None" I should not try to quantify "Unable to Quantitate". My official clinical trial "Response Report" summarizes the findings as "Stable Disease".

Now to add a nice twist (or rant) to all this. My lovely mutation does not express an M-spike and therefore watching it is a stupid idea. Name calling is inappropriate though. So I watch the levels of a particular light chain protein which is monitored with a serum free light chain assay or a similar urine electrophoresis free light chain test. Over the last 2+ months my expression of lambda free light chains has dropped from about 1500 to 1000 (mg/dL) after a trend of doubling every 2 months previously.

I'm going with the optimistic perspective on the "Stable" interpretation.

Tuesday, October 16, 2007

Hot Flashes

I now refer to a Velcade cycle as a course. Not that I have learned anything, but as a token of a new found appreciation for a woman's monthly course. No my hot flashes are not accompanied by cramps unless the precursor to the powerful room clearing almighty wind counts. There are no unprovoked emotional expressions (at least as far as I'm concerned!) The blood lose is minimal, extremely sanitary (according to the phlebotomist) and so far the anemia is minor. I have learned not to expect any form of compassion or sympathy (especially from men). Proximity to clean porcelain altars is important. (I hydrate like a sea cow, but don't live in my urinal.) Chocolate, a warm bed and a good book help.

As for the boring details: Two courses down with nothing exciting to report other than reporting nothing exciting is exciting to me. Funny how the mundane becomes significant when threatened. My blood counts trend down for 2 weeks and then bounce back during my week off. On Friday every line in my CBC and CMP was within normal ranges. I'll learn next week if any myeloma significant markers have changed.

So, I'm off to see the wizard... with my orange buckets and plump veins.

Wednesday, September 26, 2007

Balloons



Velcade often causes gas (and worse blowouts). It is a potent chemical weapon causing facial contortions. So I have the week off. (from Roswell at least!) We celebrated with a quick trip to the Adirondack balloon festival this past weekend.

There is nothing more wonderful than being surrounded by love and laughter. Friends and family from all over the country made for a weekend I'll always remember.

My nephews specialize in anarchy. So I got the younger one a CB radio for his birthday. We built a fire to destroy things in. I think explosives are needed. Ma and Dad 'll appreciate that I'm sure. They live 3000 miles away so we should be safe on the east coast.

Wednesday, September 19, 2007

Quinine

Other than the general pain in the ass of spending a good portion of a day sitting around reading John le Carre' or listening to Dune (Frank Herbert) I have to admit to feeling just fine. Velcade (bortezomib) messes with cellular level protein "recycling". Being an avid recycler and former bicycler has undoubtedly altered my cellular level wisdom. Therefore intracellular protein buildup caused by Velcade which often leads to a cellular level dehydration manifested as fatigue just ain't happening. (ha ha) Quinine is suggested as a counter measure. Unfortunately tonic water without the gin is pretty nasty stuff (and loaded with high fructose corn syrup or aspartame). The only FDA approved use is for malaria so a script is not an option. Do you know of any other sources?

Saturday, September 15, 2007

Joanie


My dear friend Joanie won her battle with breast cancer this week. Great news in a difficult to articulate, tough to deal with sort of way. It is wonderful having friends you can count on for a laugh and a smile. Those special few who somehow just shine despite the weather. I am blessed with memories of Joanie shining brighter than ever, burning off some of that fog that settled in like pea soup, stranding me panicked scared and lost while out cruising on the Cancer Parkway. I am honored to have such a beacon shining in the here-after. Shine on girl friend.

Oh yea and that Friday evening trip down the Parkway to Velcade has left me feeling just fine. Nice place, no fog!

Thursday, September 13, 2007

Side Effects


I am happy to report that no unusual regurgitations have occurred. Just the normal verbal drool. I can see just fine. Of course the weird headache and runny nose must fall under one of the 3 pages of potential side effects somewhere. I couldn't just have the sniffles. No hysteria in that! When I stop laughing about this crazy journey of mine you'll know they finally gave me some nasty shit to shut me up.

Wednesday, September 12, 2007

Trial-R1

Well the defense team was stellar yesterday. In fact bored at the lame pace of events. Stick and suck, wait, poke, prod and measure... wait, stick and drip, wait, measure, wait, measure, wait, measure wait. 8 hours later I left for home. Neither my blood pressure or temperature reacted. I got through most of a good murder mystery set in the fictitious town of Millers Kill, just up the Hudson River from my home town. I like the way places and businesses were renamed to protect the innocent. When the nurse pulled my IV and splattered blood on the page I was reading it added nicely to the thrill.

In short I was randomized in the clinical trial to receive the high dose of TRM-1 (a Fully Human Monoclonal Antibody to TRAIL-R1 which appears to have some anti-myeloma efficacy). So after I received the Velcade and a 1 hour infusion of TRM-1 I sat around for 4 hours to make sure I didn't have an allergic reaction. Hence all the measure and wait crap.

The Benadryl they gave me knocked me out by 8. Now I just feel like I had a lousy breakfast. I'll be watching for these especially exciting Velcade side effects:

  • vomiting material that looks like coffee grounds (I filter my coffee)
  • inability to speak or understand speech (normal interaction with colleagues)
  • loss of memory (normal, besides how would I know?)
  • loss of vision (after the memory loss would be preferred)
  • difficulty thinking clearly (maybe Lu could comment on these?)
  • difficulty using good judgment (normal)
  • difficulty understanding reality (normal)

Provided I can see if I hurl coffee grounds you all will have to let me know if I seem to be especially "normal" in some unique way.

Wednesday, August 29, 2007

Trial Tests

I had yet another skeletal survey yesterday. Why 50 more pictures where needed is of questionable efficacy. Maybe low level radiation is linked to myeloma and this is all a big scam. They through in a chest x-ray for good measure. If I am not glowing today I never will. The EKG indicates I still have a functioning heart. The physical indicated I am indeed physically present (and reasonably healthy). I studied hard for the pee and blood tests so I should be able to start the trial in about a week.

We switched to a Tuesday morning & Friday after class schedule (so I can continue to escape on the weekends).

This past weekend my soul was touched by many dear old friends. It is absolutely wonderful to be graced with life long friends.

Tuesday, July 24, 2007

Stalling

I have managed to forestall treatment until early September. I figure a few days of infusions each week should be a nice way to bring in the burgeoning fall. What is left unsaid here is the surprising tenacity of my plasma cells. Those little bastards got right back to reproduction and have steadily crowded out half my marrow over the past 10 months. I am happy to report there are no new holes in my head though. The current ones provide ample excuse for the quality of this verbiage.

I'll bolster my defense team for that anti TRAIL-R1 docket NCT00315757 I mentioned a while back over the next month. The bolstering will come in the form of heightened creativity leading to effortless productivity while enduring lots of lakeside captivity.

Tuesday, July 17, 2007

Skeletal Survey

To the untrained optimistically biased eye the holes in my head are smaller. I like my perspective on life (most of the time). So Thursday I'll take a biased look at some MRI reconstructions. On Monday we'll let the "experts" air their biases. They need a lot more time to come to a more sophisticated sounding interpretation. Surveying can be complicated.

In the mean time I will continue to jump away on the water trampoline and try not to get sun burned.

Wednesday, June 13, 2007

The Sandpiper


Lu's stroke of brilliance this month was purchasing a time share in Lincoln City on the Oregon coast (for the same price as renting the place.) Here we are in awe of the amazing view from the front deck. My therapy this week was to raise my cellular vibration by communing with nature. Walks on the beach, hikes in the woods, birding, wonderful drives along the coast and a temporary bit of sand art to gaze at out the front door.

Tuesday, May 29, 2007

Orange Buckets

It is nice to not have to leave my office to pee. My handy orange bucket is safely tucked away in my back pack. I wonder what my lab tech does with these jugs of lemonade. Do they have a lab pool to see who gets the honor. Maybe rocks, paper, scissors? It could be a desirable test because it takes so long. All the centrifuging and separating and waiting...

So in another week and a half I'll let you know what they found. A vacation in the meanwhile sounds good to me.

Thursday, May 17, 2007

Standing Ovation

On Tuesday Lu and I attended the annual Gilda's Club Western New York benefactors awards luncheon. Nice lunch, sorta boring awards descriptions and acceptance speeches. It closes with a 3-4 minute talk from a club member, my wife Lu.

Skipping and paraphrasing her message: Have you ever been driving along on a rather normal morning and suddenly wham your in a bank of fog so thick you can't see out of the car. Your panicked... should I stop, no I'll get rearended... should I pull over, where is the road? am I on the road? am I going to crash into something. freaked... panicked... scared... Well on December 27, 2005 when the doctor said to Scott you have multiple myeloma, I drove into the thickest bank of fog I have ever known. Stranded, alone and scared in a fog so thick I couldn't even think.

Then there are tail lights, faintly glowing red in the fog. Some sense of relief, I'm not alone. Those red tail lights are like the Red Door at Gilda's Club. A light in the fog. A place where I am not alone in this fog.

...

Well as she walked off stage I stood tears streaming and reached out for a hug. What I next saw was 700 hundred people all standing, many crying, all clapping.

It was a moving way to say thank you to all those benefactors who help make Gilda's Club a sanctuary of hope and companionship for those of us touched by cancer.

Wednesday, May 09, 2007

Hot Springs

Well I was a smash hit on PM Buffalo. Two fine sentences without any major grammatical errors or embarrassing blunders.

Then we left for Hot Springs Arkansas to boil my blood. Oh golly what a grand opulent pampered luxurious adventure. Thermal waters pumped right into our hotel room. Three baths a day, in addition to the pool, hot tub, and of course quartz crystal mining. Being the rock hounds that we are there was plenty of barking at the moon.

Drove right by and waved at the Little Rock medical center and Mr. Myeloma and his Total Therapy III. I'm not up for total therapy. In fact I want as little therapy as possible.

Thursday, April 19, 2007

Should I?

PM Buffalo, 4-5 a week from Monday. Live TV. Never dun nuttin like dat. I darn sure I cud do my self real good.

I suppose I could talk myself into a tizzy and blunder fabulously. I'll make the call and attempt to hold the drama at bay.

Wednesday, April 18, 2007

Rosana Rosanadana


So I'm asked to be on a "panel" at the Worldwide Gilda's Club annual meeting today. I'm a reasonably articulate engineer type. I make a living teaching... "Sure, I'd be glad to."

So there I am on stage in a comfy chair with my wife, Lu, to my the right and a few friends. Talk show, aka David Letterman, style. A small studio audience of about a hundred. Half the size of my fall "Intro to Computers and Instrumentation" class.

Start of the show, Letterman lobs the softball, "What does Gilda's mean to you." I start with "I'm an engineer. A pretty accomplished control freak. Behind that Red Door"... long pause, composure crumbling.......... tears streaming down my face, all choked up, I look up and see everyone else has joined in the fun. As Rosana Rosanadana would put it, "I thought I was gonna die!" I just hand the mic to Lu who gives me that "Thanks a lot, how am I supposed to follow that!" look. Needless to say I guess my message got across without actually having to say anything.

So after a standing ovation and a real talk show offer I'm not totally ashamed.

You want an idea of what Gilda's has to offer? Put yourself in the car, nice summer day, cruising along and all the sudden there's a squirrel right in front of you. Frozen, no darting, frozen, darting, back in your lane, gone -- your nails are dug into the wheel, the FREAKED ADRENALINE RUSH is passing.

Well I'm the squirrel. I look up, there is this enormous thundering beast with Myeloma scrolled across the grill barreling down on me at 60 MPH. I can't run, I'm paralyzed, spassed out, out of control, can't fix it, what to do - oh shit. Gone. Unfortunately I gotta cross that road every day, about 50 times. It's not an expressway thank God. Most of the time there aren't even any cars. I might even go a day without a bit of traffic.

I go to Gilda's to hang with the squirrels. To laugh a lot as you can imagine us squirrel like to do. The traffic takes its toll, but us squirrels got a way of pulling together and finding those acorns.

"Never mind."

Sunday, April 08, 2007

Native Spirit


Unga Unga!

Just what is it about spontaneous expression of ones soul that livens the spirit? Is it our uniqueness that is the enduring distinct entity, the spiritual part that longs for resurrection not just on Easter, but every day?

Well don't turn to me for answers. It is that very uniqueness that I struggle to uncover, to resurrect from my depths and bring to life. That creative spear chucking native spirit is coming out to play.

Some summer weather would help with the new look, but I'll go with the Eskimo genre on this snowy Easter.

Thursday, April 05, 2007

Relative Strangler

Yup I got strangled big time. What on earth made me wait 86 minutes for "Relative Strangers" to never get any better? In the big picture I guess I've wasted countless 86 minute stretches of life, but at my age? After so much practice. Come on, Scott. What on earth got into you? You own a perfectly fine remote - just one click. It's OK you've also wasted 3 bucks before, it can't be the rental charge.

I just wanted to laugh a bit after all the hysteria surrounding my court case. Any suggestions? I like a dry merlot humor with a hint of sex.

I gave my final exam today. A cross registered grad/undergrad class, Cardiovascular Biomechanics. How come all the undergrads felt compelled to ignore questions and finish the exam before any of the grads? Something about the math questions seemed to scramble their brains. Couldn't have been the instructor could it?

Wednesday, April 04, 2007

Mr. Sandman Brought Me a Dream


Click here to sing along...

Mr. Sandman, bring me a dream
Make me the happiest that I've ever been
Give me new bones strong as bulldozers
Then tell me that my fearful nights are over.
Sandman, I'm not alone
I have somebody to call my own
Please turn on your magic beam
Mr. Sandman, bring me a dream.

Mr. Sandman, brought me a dream.
Made me the happiest that I've ever been
Gave me the word that my kidneys are safe
Then told me that my labs were just chafe

Mr. Sandman, I'm not alone
I've got someone to call my own
I'm the luckiest you've ever seen
Mr. Sandman, brought me a dream

Mr. Sandman bring me a dream
Tell Lu her pair of eyes have a "come-hither" gleam
I've not a lonely heart like Pagliacci
but a throbbing one like Liberace

Mr. Sandman, someone to hold
Would be so peachy before we're to old
So please turn on your magic beam
Mr. Sandman, bring us, please, please, please
Mr. Sandman, bring us a dream

Monday, April 02, 2007

Mr. Sand Man Sent me a Beach


He sprinkled sand like you wouldn't believe. I went to inspect the new septic system at the camp. We now have a hay covered beach want-a-be right next to the deck. It's hard to get all freaked out over sand, but this is weird. I wasn't expecting the side yard to be 3 feet higher. Truth be told I didn't really think about it. I just figured the lawn would be a mess and we would deal with it.

It needs pink flamingos and a pony to eat the hay.

Sunday, April 01, 2007

Green Day

Should it be "Green Day" or "Shoot the Ground Hog"? In short I'm feeling that grey, torrential, thunderous gloom of when is spring gonna get it's shit together. (Maybe the long rain streaks on the French door screen combined with the continual heavenly reports is having a visceral effect on me.) The folksy weather predicting ground hog should be shot! It's April fools day for God's sake. Yes the lawn is feeling it, but I am a bit more judgmental. Cold wet oppressive weather with longer daylight hours just isn't doing it for me. All the sudden that brownish grey grip of winter is shattered and poof the grass turns that rich almost kelly green, a bragging of sorts. It's my turn to brag already. If you live with shorter (or non-existent) winters don't tell me about! Firstly, I don't want pity and secondly I just might go into a funk - and blame you.



We closed on a lake front piece of heaven on earth on Lu's birthday (how fortuitous!) a couple months ago. I've got a serious itch for those idyllic warm low humidity long summer day. I learned there is no recorded temperature above 100 in Buffalo (we have hit 99F) and the lakes (usually) keep the humidity comfortably low.

Come on let me have it.

gimme gimme gimme,
whine whimper stomp and pout
can't you hear me shout!

Saturday, March 31, 2007

Chain Gang

It does appear that I've been forced into servitude in the light chain gang. I'll talk to the doc on Monday about rites of passage and other ceremonial rituals. The bondage and general state of subjection to the chemo master will not be taken without a rowdy skirmish.

I did worse than before on the makeup tests. Trick questions I guess. I didn't study very hard for the urine test.

Saturday, March 24, 2007

Trial-R1

I've never really been to court. Especially not for the trial of my life. Docket number HGS1012-C1055. The charge is reckless endangerment using a concealed weapon, myeloma. I have little foresight as to the verdict and potential sentence. It's freaky for sure. The trial is expected to last a year. A whole damn year!

I'm on a light chain gang pending arraignment and a preliminary hearing. I guess in this system speedy trials are reserved for the well connected. I get 3 decent meals a day, but have to deal with emotional baggage all day. They want to install a mediport no doubt to make tracking and manipulation of me easier. This is all so ethereal. I just know they got the wrong guy.

Tuesday, March 20, 2007

Light Chains

I have just ended my 3 month self prescribed period of denial. A powerful ally. You got a problem, just deny it exists and poof, its gone. Simple as that. I'm no shrink, but it works pretty well for a lot of folks. Ever listen to a climate change debate?

So not unlike the climate change deniers, my plasma cells have morphed their stance to fit the current climate. They got pissed at the drugs screwing with their climate and developed a new found fetish for light chains. No more classic M-spike, no more mild mannered reporting. The only way to see what's up is to give them a "free light test". My highly technical understanding is: if you give someone something they have a fetish for they get all excited and light up. So when you offer them free lights apparently they turn on all the light chains so you can see them. It's called light chain disease.

I'm not sure what that means in terms of life and death, but I'm pissed off. I wanted a full decade of denial, or at least a year. I didn't even get 3 full months! There are 10 times as many light chains now as there was 3 months ago. So I'm shopping for a clinical trial with my oncologist. I'll let you know in a couple weeks what we decide to buy.

Friday, January 05, 2007

Myeloma Monkey

The ever present myeloma monkey jumps, screams, dances and sleeps on my back now. A year ago today I learned about the holes in my head, the state of my marrow and the trauma that such knowledge can bring. I now play more often with my monkey than I ever thought possible on that fitful day one year ago. I have learned a new language, myeloma monkey speak, which is full of acronyms and unusual phrasing. For example, my M-spike is quite normal these days (M is for My Monkey's Monoclonal protein expression from My Malignant Marrow) After 6 months of crazed chemo I am waiting and watching to see what my monkey-spike does. Let pray that the monkey stays asleep.

I'll spare you the 2006 monkey minded end of the year recap. We did lots of really intense stuff.