Wednesday, December 31, 2008

Freezing Fog

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

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



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

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

Its Party Time

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

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

The oncologist said: "No More Dex!!"

It is definitely Party Time Tonight!

Wednesday, December 10, 2008

Meet the Man's

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

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

Monday, December 08, 2008

Gingerbread

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

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

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

Thursday, December 04, 2008

Ups and Downs

Slowly but surely my MM protein expression is dying off. That's a good thing! Three cycles and three quarters gone. (another 30% reduction) I like that. The bionic arm is slowly learning to act human. The semester is quickly coming to an end and my Christmas cheer is all the more enhanced by the good news. We are minimalist when it comes to Christmas consumption, but I do love the new smells, music and festive lights. I get to dress up as a gingerbread man and act like a cheerful dork Friday. That aught to help my spirit. I guess a picture is in order.

My dear friend Sue who has graced me with her love and compassion, who has inspired me with her courage and perseverance passed away early yesterday morning at Hospice Buffalo. May your journey be filled with passion and love and guided by the grace of God. Here she is with that infectious smile in the Gilda's library. Peace be with you.

Protein expression going down perks me up as does Sue's smile, her memory and the fondness of all that support she brought the Wednesday evening Gilda's Wellness Group.

Sunday, November 23, 2008

Vitamin K2

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

Thursday, November 13, 2008

Yet Another Response

Well after a 50% reduction in the first cycle of Rev/dex I am happy to report another significant response in the second cycle. My myeloma marker of choice (lambda free light chain expression) dropped another 30%. Now if the GRN163L had any effect on the myeloma stem cells then I may be looking at a nice long term remission. :-)

I guess you'll have to be patient on that front.

I started making sound with a mandolin a while ago. The tuning and fingering is the same as a violin which I used to be able to make music with. It is definately not like a violin and I don't make music - yet. I am having a great time though. It stretches my neurons.

Thursday, November 06, 2008

28 Day Partial Remission

I saw the oncologist yesterday and had a skeletal survey (bunch of x-rays) and an Aredia infusion (osteoporosis type bone strengthening drug) in the evening. My myeloma activity markers (protein expression) dropped by 50% in the first 28 days on Revlimid and Dex. My blood counts are still hovering around 'normal' and consequently my fatigue is pretty mellow. Now I'm working on getting the arm back in shape - it is quite gaunt and painful if I do just the right flex. The pain disappears instantly though, but I instinctively use my arm less which helps with the general left arm malnourished look. I'll find out what happened in the second 28 day cycle of Revlimid and Dex early next week.

At the beginning of October Geoff's Light the Night team raised $550 for the Western NY Leukemia and Lymphoma (and Myeloma) Society. They are a great in the trenches type of organization. They were the first people to call me after my diagnosis and connected me up with a few other survivors. The total team raised almost 5 grand in my name. Wow!

Gildas Club Western New York Logo
Two weeks ago Thursday I gave a 5 minute closing emotional hook at the annual Gilda's Club WNY fund raising breakfast. That one hour bash raised over 200 grand. I'd like to think my 5 minute story hooked and reeled in a little bit of extra cash for the best club I've ever been a member of.

Saturday night Lu and I along with 28 of our friends went to an IMF fund raising event "Evening for a Cure" and raised a bit over 2 grand for my oncologist's research efforts. There were another 190 folks there so I'm hoping the proceeds will be enough to keep one more staff member going for another year. I feel so blessed to have an oncologist who is doing cutting edge world renown myeloma research.

I am profoundly touched and honored by the generosity and compassion of my friends and mostly by acknowledging your and their love and support of me. It bring tears to my eyes every time I think about it.

I hope all is well with everyone. I'm certainly excited today (a Dex day which started at 3 AM). I'm playing really crappy mandolin now and getting more genuine every day.

Wednesday, October 01, 2008

Light the Night Walk

This Friday is the "Light the Night Walk" in Delaware Park. My boy's team, lead by Jessica Del Mauro, will walk two miles to honor those effected by Leukemia, Lymphoma and Myeloma. Jessie was just recently diagnosed with Lymphoma herself. She has graciously pledged all money raised by her team in my honor. I am humbled and grateful of all the team members efforts. Such outpourings of support are a wonderful thing to see and feel!

The Leukemia & Lymphoma Society's (LLS) Light The Night Walk is an annual event to raise funds for cures. It’s the nation’s night to pay tribute and bring hope to thousands of patients and their families.

Funds raised through Light The Night Walk support the work of hundreds of the world’s best and brightest researchers in their search for better therapies and cures for leukemia, lymphoma and myeloma.

Jessica's team has a matching donor which will double their efforts. Western New York is among the highest per capita charitable donation levels in the country. It is a wonderful place to be, especially this time of year.

Monday, September 15, 2008

Humorous Message Boards

I get such a kick out of folks on the Geron Yahoo Message Board speculating about their stock’s prospects from a humor oriented blog. If you go to the message board and search for LPC there is more humor to be found there than in this drool. I got the biggest kick out of speculations like: “LPC has left the trial and is on the verge of death… LPC is DYING and you can see it on his blog…” In all fairness it is certainly true that I will die some day. I wonder how many of these folks I’ll outlive though. I also don’t think there is any question that my disease progressed while I was on the trial. Bone marrow MRIs done pre & post trial indicated a change in “involvement of the central bone marrow with multiple myeloma” from “30-40%” to “more than 50%” respectively. From the response markers (M-spike, Serum FLC expression, 24 hr Urine FLC/PEP & skeletal survey) monitored on the trial I had stable disease (less than 25% variation) until the last cycle. I was playing tennis 3 days a week until I busted my arm, which in hind sight was not so shocking. I have known about the condition of my humerus for almost 3 years. It still hurt and clearly caught me off guard.

I have to admit that Securities Fraud never crossed my mind until posts like “Anybody who references LPC is a Pump and Dump Scammer” got me thinking about pumping and dumping. If an idiot like me could pump and dump a stock then there is clearly either a lot of other idiots out there or a bunch of stock holders that don’t do very sound research on their investments.

No I have never got a call from a lawyer telling me to shut up, thank you very much. I'll bet the Geron lawyers are not idiots.

Still Smiling,

LPC

Sunday, September 07, 2008

I'm Back

The door is closed on the humerus radiation.

The next day I moved on to Carson Mineral Hot Springs Spa for several days of glorious pampering with lots of mineral baths and body raps and a few tailored massages to help with the tension of being "one armed."

It was 107 F (42 C) so we went to a snow fed swimming hole, Dog Creek Falls. I can't imagine going near that water if it wasn't so darn hot out.

On the way to the Oregon coast we stopped at Multnomah Falls.

The Oregon Coast was glorious as always. We spent 5 days right on the Pacific in a huge house with Lu's immediate family (Ma and all her sisters and their families). It was a wonderful family reunion. We got to escape to walk the tide pools, watch the whales, and do a bit of bird watching.

Right in the middle of it all Lu and I renewed our vows in a heartfelt ceremony at Unity by the Sea in Glendeden Beach.

We flew back just in time for the fall semester to start and a mad rush to submit a NSF proposal. For the geeks in the crowd we do fluid flow investigations using holographic imaging techniques - need I say more?

On the MM front my blood bounced back from an 8.1 hemoglobin to an 11.8 while I was vacationing! Yea ha. My humerus has healed remarkably well according to the x-rays (and the surgeon I met with this afternoon).

I started Rev/dex today. Maybe all this hemoglobin, dex and good news is why I have so much more energy than usual!?

I'm anxiously hoping the GRN will really begin showing it's colors now. A nice long lasting (40 year) remission :-)

Wednesday, August 13, 2008

Just the Boring Facts

I have received numerous inquiries about my experience with GRN163L. Unfortunately my MM did progress toward the end of the 20 weeks I was on the trial. I withdrew from the trial and was looking forward to a drug free escape for the rest of the summer. It is obvious that a significant part of the disease progress occurred in my left humerus. I now have a nice titanium spike in my arm. To eliminate some the healing competition I immediately started radiation treatment to kill off the MM tumor near the break. Just the left humerus and rotator cuff area are getting zapped.

Next is a Rev/low dose dex regimen scheduled to start in early September. The durability of which may be affected by the GRN163L therapy. Remember GRN is not an anti-tumor agent. It is an anti-MM stem cell agent. It is assumed the MM stem cell is a very small portion of the tumor burden. Only time will tell.

Remember Spiderman has radioactive blood...

Sunday, August 10, 2008

Spidey Conversion Progress

As many of you may already know Spiderman has radioactive blood AND there is a real dearth of superheros these days. In an effort to do my part for the world and mankind I am well on my way through the 12 treatment Spidey conversion process. I have purchased several sleeveless muscle shirts in part because they fit over my fracture brace and more importantly I gotta be ready when I actually obtain some muscles. I've never had muscles and continue to look like a dork in a muscle shirt, but you just wait! The treatment takes about 5-10 minutes most of which is setup and positioning. Check out that cool grid and laser alignment. I have been reassured that I don't eat, breath or perform any other related vital functions with my left humerus so there should be no side effects (other than those mentioned above).

I am over the hump and coasting toward a full recovery. The killer muscle tension I get from long periods of immobilization are irritating and screw around with that deep restful sleep I so long to experience. Complaining about such triviality after I step back and look at a slightly bigger picture makes me feel like a whiner. I have to admit whining is rewarding at times but it is sort of like shopping - the high is short lived.

P-n-L, Spidey

Saturday, July 26, 2008

The Funny Bone

I'm no longer a hospital virgin. Starting with 14 hrs in an inner city ER to learning that Versed (Midazolam) turns me into a non-stop talking machine (aka slut). Lu walked in the recovery suite and asked my nurse "Who's he talking to?" She replied, "Nobody as far as I can tell, he hasn't shut up since he got in here."

I got 5 units of blood, 1 in preparation, 2 during surgery to replace the 2 that ended up on the floor and another 2 because I left the OR with a hemoglobin of 7.1. Apparently I shattered the expected 2 tablespoon norm. As a consequence I do not have any screws at the elbow end of the titanium spike in my humerus. There just wasn't time and a bit of concern related to hematoma(s). There is a metaphysical-feeling set of consequences which led to the 2 units of blood that were hanging during surgery. Let's just say Lu is more amazing than I can give her credit for without sounding like a wacko.

So I left recovery with a new friend's (my recovery nurse, Patti) email taped to my chest. (there was no way I was going to remember anything like an email address)

My Mom found an empty room larger than the one I was to be squeezed into and Lu again worked her magic and got a room change to a family room with a hide-a-bed for her, my mom and all the kids to be comfortable in. That was a true top floor haven. The pain kept me in the hospital an extra day, which wasn't so bad considering the surroundings.

I'm taking a ton of Lortab for the pain, but less and less frequently. I get to pow-wow with my oncologist concerning upcoming radiation treatments this Tuesday. Unfortunately, because of the missing screws, my elbow is immobilized until August 4th. (Hopefully no longer then 10 days which should make PT a bit easier.) I will then move into a higher mobility brace.

All in all I feel blessed with the incredible out pouring of love and generosity. Thank you so very much for all your thoughts and prayers. Please feel free to post comments because I love reading them.

Tuesday, July 22, 2008

Egg Shells are Fragile

I had jumped ship on the GRN trial one week ago and had already gotten my mind around a major MM drug free summer holiday. My blood counts were starting to plummet and the 20 weekly infusions had started to make me freakier than I already am. I got a unit of Lu's blood, thank you very much, and then noticed I needed more shoes and my hair looked a bit gray.

With a hemoglobin approaching 10 I packed up a tote full of low key projects for camp all psyched for a relaxing weekend. A bit after 6 AM I go down to the dock with my camera to snap some sun rise photos. Unfortunately with one hand on each side if my kayak I learned my left humerus was just not strong enough to support lowering my fat ass into the seat... Of course I thought the dock broke - it sounded like it. The dock is fine.

The rest is a story of shock, pain and ER waiting. Today I am getting another unit of blood in prep for a new titanium humerus tomorrow at 3 PM. Then I get to irradiate it to cook the MM cells. I'll do my best at keeping everyone up to date. Remember I suck at one finger typing and can't be held responsible what I say, think or do while zonked on pain meds.

If you have any suggestions fire away.

P-n-L

Thursday, June 05, 2008

The Durability of Dandelions

It turns out the idea of cancer being fed from a stem cell like source is over 100 years old. Several years ago, like many of you, I heard the cancer stem cell phenomenon described using a dandelion analogy. Anyone who doesn't use herbicides knows you can mow down dandelions every week and they just pop right back up. If the soil is bad or the root stock is weak it might take a while, but eventually it regrows. There has been enough research done over the past several years to confirm with reasonable certainty that myeloma behaves in a similar fashion. There is a root stock (cancer stem cell) that eventually regrows a new weed (myeloma tumor). There are only a few agents that target the root stock. There are many that attack the weed above ground. Sort of like the difference between the number of lawn mowers models versus the number of broad leaf only herbicides. GRN163L happens to targets the root stock. As a single agent the therapy doesn't do much to the weed or tumor burden so all the conventional monitoring tools are not very useful measures of the drugs effectiveness.

Well guess what? By all normal standards of measure I have stable disease after 12 weeks of GRN163L. There has been no statistically significant trend in M-spike, IgG lambda expression, CRP, or Beta-2. My blood counts have continued to slowly go down which was expected and will probably be the limiting side effect. The anemia related fatigue is the only issue I really notice besides the psychological babble associated with weekly infusions. I certainly obsess about every tweak, tingle and sensation but that is a pretty normal cancer Obsessive Compulsive Disorder (OCD).

May was a great month. I took off for a few weeks to the Oregon coast. The OCD gladly receded giving way to glorious vacation. I got to commune with wonderful friends, family and some pretty amazing trees. Not to mention the Pacific Ocean and countless birds and the absolutely amazing blooms of late spring. I got a week off GRN and boy was it wonderful. Now I'm looking forward to a wonderful summer frolicking in Western New York.

Thursday, May 01, 2008

The Green side of GRN

Just how green can a drug be? Well I suppose there is the broader environmental aspects which unfortunately I have no clue about. That question does make me wonder just how much carbon is generated in bringing me GRN163L. I bet it isn't negligible.

On a more personal note I can speak to the slight green tinge my GI system has developed. Unfortunately when you get a sour stomach there is a link made between the environment and the feeling with one of the strongest connections being that of smell. However unfortunate that link might be, it probably has kept us (humans) alive by steering us away from things that smell of stuff that made us sick in the past. I still steer clear anything that smells like gin 30 some years after it made me deathly ill :-). Now I have this revulsion associated with the smells in the infusion clinic. Not such a pleasant feeling to look forward to every week.

The new clinical trials wing at Roswell smells, looks and feels totally different though. It was wonderful. A nice cushy chair big enough for Lu and I to snuggle up in and watch a movie on my laptop in. I got up early the next day and went and played tennis. All my shots were well inside the green boundary. (In my fantasy world at least!)

My LDH (a test which monitors tissue damage in the body and its progress) has been creeping up slowly. For now I'm going with the green theory - the GRN is making fertilizer with my myeloma cells. It also appears to be making a bit of fertilizer with all the cells in my blood as well. That's not necessary.

That vibrant spring green is everywhere these days. Early March hang on until a couple weeks ago and gave way to May a bit early. I have never seen snow drops, crocus', daffodils, tulips and lilacs all in bloom at the same time. It's really green here - all the sudden.

This Tuesday will be my 12th week of GRN. Along with that comes a bunch of response marker tests. I'll let you know what I learn later in the week. Till then think green and walk somewhere just for the heck of it.

Tuesday, April 08, 2008

Purslane Surprise

We got a great surprise in our mailbox yesterday. A packet of purslane (and other) seeds from Nichols Garden Nursery (our absolute favorite nursery, run by the most wonderful couple, Rose Marie and Keane). Here it is, the peak of busy. Frantic preparations counting down to their annual Plant Day (May 17th) and Rose Marie finds the time to read my blog, send me a catalog, a note and several packets of seeds. The world is a better place because of dear folks like these.

I thought I would slip in some news about Mr. Stable, yours truly. My serum markers went up (but not to baseline levels!) and my urine protein expression went down 45% from the first cycle (now 25% below baseline). So how should I spin these numbers? How about if I fantasize about a pita stuffed with broccoli sprouts and purslane (courtesy of Nichols!) while sipping some green tea and just laugh about it.

Next week I get to go to the new Phase I/II wing at Roswell. The place is both gorgeous and impressive. Private rooms with all the bells and whistles, a dedicated pharmacy, specially trained research nurses and of course comfy chairs & flat screen TVs... I don't think I'll all the sudden start looking forward to my visits, but geese it sure feels nice.

Monday, April 07, 2008

He who laughs first

So if I tell you I'm going to tell you a funny joke your immune response will be beneficial - right?

According to a presentation today the 121st Annual Meeting of the American Physiological Society in San Diego, California a good dose of comedy might be just what the doctor ordered.

Back in 2006, Berk and his colleagues found that merely anticipating laughter boosted the production of mood-elevating hormones called β-endorphins and the immunity-enhancing human growth hormone by 27% and 87%, respectively.

.

.

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Berk and his team report today at the 121st Annual Meeting of the American Physiological Society in San Diego, California, that levels of all three stress chemicals decreased before, during and after the men viewed their videos. Thirty minutes after the videos were watched, cortisol was down 67%, adrenaline was down 35%, and DOPAC was down 69%. But what really shocked the team was that cortisol, adrenaline and DOPAC decreased by 39%, 70%, and 38% respectively before anything funny was seen. “It would seem that merely having a merry heart in anticipation of the happy experience lowered stress levels... they dropped before videos were even watched” says Berk.

So you can stop reading boring blog entries and go do something worth laughing about. Have fun!

According to another abstract you should consider drinking some green tea while you do it:

Ingredient Found In Green Tea Significantly Inhibits Breast Cancer Growth In Female Mice – Green tea is high in the antioxidant EGCG (epigallocatechin-3- gallate) which helps prevent the body’s cells from becoming damaged and prematurely aged. Studies have suggested that the combination of green tea and EGCG may also be beneficial by providing protection against certain types of cancers, including breast cancer. A new study conducted by researchers at the University of Mississippi finds that consuming EGCG significantly inhibits breast tumor growth in female mice. These results bring us one step closer to better understanding the disease and potentially new and naturally occurring therapies.

Monday, March 24, 2008

First Cycle Response

Well I got my response indicators for my first GRN163L cycle (3 weeks) this afternoon. The serum indicators (which I believe are more reliable) all showed positive results. My urine free light chain protein expression was up slightly. I must have pissed just a bit too much :-).

For the more technically enthusiastic there was an 18% drop in my serum lambda FLC expression to 1448 mg/dL. My kappa FLC expression was actually quantifiable although still pathetically low at 0.72 mg/dL. My IgA and IgM antibodies went up slightly :-) and my IgG went down slightly :-(. I have an insignificant serum M-spike. I'll learn about the rest of the indicators after the second cycle in a couple weeks. I'm gonna run to Andalasia with that news and sleep a bit better for a while.

On another note... I was pleased to find everything on The 10 Best Foods You Aren't Eating list from the March Wild Divine Newsletter in my kitchen (and diet) except Purslane. Something to try by the sound of it:

Although the FDA classifies purslane as a broad-leaved weed, it's a popular vegetable and herb in many other countries, including China, Mexico, and Greece.

Why it's healthy: Purslane has the highest amount of heart-healthy omega-3 fats of any edible plant, according to researchers at the University of Texas at San Antonio. The scientists also report that this herb has 10 to 20 times more melatonin -- an antioxidant that may inhibit cancer growth -- than any other fruit or vegetable tested.

How to eat it: In a salad. Think of purslane as a great alternative or addition to lettuce: The leaves and stems are crisp, chewy, and succulent, and they have a mild lemony taste. Look for it at your local farmer's market, or Chinese or Mexican market. It's also available at some Whole Foods stores, as an individual leafy green or in premade salad mixes.

Wednesday, March 19, 2008

Predictably Irrational

I can integrate and differentiate but I can't count... How predictable it that! No update yesterday. One cycle is 3 weeks. Yesterday was week 4 so all the markers of interest were tested prior to yesterdays treatment not at the end of last week's. Dah! So I'll wait until next Tuesday to look at them.

I happen to be an Audible (audio book) listener and just finished "Predictable Irrational" by Dan Ariely. It was wonderfully entertaining and informative. I highly recommend it for anyone interested in the subtleties of our decision making process and likes science as it is filled with studies to reinforce points of interest. It touches on areas like the placebo effect with thought provoking insight. For example:

Do we get what we pay for?

placebo_art_257_20080304155738.jpgThe nights in the burn department were always difficult, and many of the patients would regularly ask (beg) for more painkillers to help them fall sleep. One afternoon I overheard the doctors tell the nurses not to give a certain patient any more morphine. A few hours later, when the same patient started begging for painkillers I saw the nurse go to her room with an injection and a few seconds later the patient quietly went to sleep. When the nurse stopped by my room, I asked her about it and with a smile she told me that she had given the patient IV fluid.This was the first time I experienced (secondhand) the power of placebo. I am not sure if they ever treated me with the same method, but it is certainly possible.Years later I became even more impressed with placebos when I learned that a placebo for pain has a very clear physiology. When we expect to get pain relief, our brain secretes a substance that is very much like morphine and this substance makes the pain go away. This means that even if the injection contains no painkiller we can still get pain relief courtesy of our own brain.Yesterday we published a study in The Journal of the American Medical Association about placebos. In this study we showed that when people get more expensive painkillers (placebos in our case) they expect a lot and get a lot of pain relief, but when the price of these pills is discounted, the expectations are lowered and so is their efficacy. As it turns out, with painkillers, we sometimes get what we pay for.For a story in the NYT see this link

Friday, March 14, 2008

MM Complementary Matrix

Although I haven't had much to share I have been actively lurking. Watching my friends that I have never met walk (or in some cases run, i.e. Don!) the MM triathlon. A bit of swimming and peddling thrown in for good measure. We have an extremely dedicated community full of compassion and intelligence. Getting ones mind around just a fraction of the information available is staggering. The myeloma matrix available from the IMF which tabulates current clinical and pre-clinical drugs needs to be extended to the supportive therapy realm of supplements, diet, exercise, mindfulness and the likes. One quickly notices that anything in clinical or pre-clinical phase that is available without a prescription is jumped on by the community. For example green tea extract, curcumin, Ganoderma (Reishi or Lingzhi mushrooms) and capsaicin. It is highly unlikely that any agent especially the ancient already tried ones will be curative. On the other hand in combination or as supportive or maintenance therapy substances with as few side effects as curcumin are a welcome alternative.

As for GRN163L, it throws me for a 24 hour yuck. A slight fever and associated headache and body cramps. This week Zometa was added just before the GRN and it doubled the yuck. In fact my fever went up so high (101.5/38.6) they wanted to see me and do a bunch of cultures to rule out infection. I get a slight PT-INR increase for several hours, but it returns to normal within a day. I'll get my first 3 week response update on Tuesday. I'll be sure to let you all know what I find out.

In the mean time maybe some of the more industrious, energetic and resourceful MMers will do some Complementary Multiple Myeloma Matrix brain storming. :-)

Saturday, March 01, 2008

A Prayer and a Dream

This morning as I stirred Lu from a late morning slumber with gentle nuzzles and a few pokes and prods I asked "Is there anything I can do to make you happy?" She replied "Ya, tell me your cured and give me back those dreams."

"Sure no problem. The GRN163L took care of the myeloma. I just have to go back for a few more weeks to prove it. You'll notice how great I feel and pleased I am. Shall we do some dreaming?"

That led to many laughs and lots of scheming and fantasizing about dreams and how to realize them.

The gory details of the first week involve mostly emotional trauma. Going back to Roswell every day except Thursday was more ominous than I expected. Lots of pokes, pissing and a bone marrow aspirate. On infusion day they took about 360 cc (1.5 cups) of blood over about 4 1/2 hours. No, none, zilch, zip, nada side effects!

Saturday, February 23, 2008

Weird Gadgets

Lu stumbled across a jab at the worst gadgets to clutter your life with:

Camping Ice Cream Maker

Do you use an ice cream maker at home? Then why would you need one in the woods? If you're going to make ice cream while camping, you're going to have to lug a 5 lb. bag of ice, cream and sugar into the forest. Where will you get those things? The same store that sells Ben and Jerry's. $24.95 from REI.com.

I actually like REI, more so 30 years ago when it was a real co-op instead of another yuppie gear store. The absurdity of lugging the raw materials into the woods gave us a good laugh. We did a lot of pathetic ill prepared aborted camping in our youth.

What I need is the Tank Chair to get into the woods.


Tank Chair

Finally, a wheelchair fit for the Popular Mechanics reader. Those wishing to turn themselves into human-powered Mars Rovers should be able to pick up this track-powered behemoth later this month ... for a hefty $15,000.

Sunday, February 17, 2008

Relationships, Experiences and Time

Just what is it that make one feel fulfilled? I noticed that as I have aged that has changed, but there are a few steadfast somewhat philosophical descriptors that keep popping up. Friends are almost always involved. We tend to be experiencing life with an enhanced richness, even if circumstances are rather mundane. Solitary creativity pops up, but rarely in total isolation. Sharing that pathetic scratchy twinkle twinkle little star with my friends added immensely to the experience of learning to play the violin (all over again after 30 years). There has been a morphing through acquisition, accomplishment, and spirituality into relationships and experiences.

Given time, which implies a certain level of financial security to not have to "work" so much just to eat and sleep that you can't have relationships and experiences, you are left with potential. What is it that tips potential toward manifestation? Why do I so often stumble on happiness? Why is it after half a century fulfillment feels elusive? Are folks in the happiest countries (1. Denmark, 2. Switzerland, 3. Austria, 4. Iceland, 5. The Bahamas, 6. Finland, 7. Sweden, 8. Bhutan, 9. Brunei, 10. Canada [ref, see also]) living a more fulfilling life? They do tend to be healthier, more educated and wealthier than less happy peoples. but they are less preoccupied with the pursuit of happiness. Maybe the pursuit itself instills a state of lack or wanting which robs one of the state of being or knowing happiness. I have never visited several of the top 10. I am looking forward sharing a few adventure rich with experiences with my best friend, Lu!!

Here are a few internet experiences people shared with me this week. This will spark a smile and warm your curiosity in the world we share Gorillas in a Tryst. This will make you laugh (if you grew up in the US during the 70's: Great Olan Mills photos If you happen to live in Florence (hint hint Margaret - get it with Chili powder!) you might want to experience an incredible cup of Vestri hot chocolate. (Borgo Albizi, 11r, Tel: 055-234-0374) Lu and I shared a mock up on Tuesday at Pano's on Elmwood Ave. [recipe] Go listen to some music with a friend while on route to yet another great experience, maybe some nice hot chocolate on a blustery winter day.

Tuesday, February 05, 2008

MM dx

Lu told a story last May at a Gilda's luncheon about that dreaded pea soup fog you find yourself in when hit with a diagnosis like multiple myeloma. My analogy involved getting into the head of happy go lucky squirrel going about his care free life. All is simple, easy and pretty straight forward. Find the nuts, eat the nuts, save some nuts, eat some more nuts, and find another squirrel to make little squirrels with. Bliss. Then one day there is this bizarre out of this world contraption coming at you faster, bigger, louder and scarier than anything has ever been before.

Welcome to your MM diagnosis day. That contraption shows up from time to time. Like during the Superbowl. :-) Now I feel more empathy for the folks around me who still get all freaked out (not that I don't have bad days!)

Sunday, January 27, 2008

Feeling Rich and Old?

If you happen to be feeling wealthy and old I have something for you to try. The company, Geron Corp., that developed the Telomerase inhibitor GRN163L, (the trial I'm going on), licensed its small molecule Telomerase Activators for non-therapeutic products in the fields of dietary food supplements, nutraceuticals and topically applied cosmetics and cosmeceuticals to Telomerase Activation Sciences, Inc. (TA Sciences). For a measly $2500 you can go to NYC, see a doctor and get a pretty sophisticated lab work up to see if you would like to go on the $22,500/year TA-65 Patton Protocol. That doesn't include the other doctors visits or lab work... "Now aging humans can re-set their cellular clock by activating telomerase, the enzyme responsible for long, healthy telomeres and youthful functioning cells. We are pleased to introduce TA-65, an exclusive telomerase activator that demonstrates measurable and positive anti-aging benefits."

So do I want to age gracefully or get rid of this myeloma? Maybe I can do both? What a quandary. Maybe I'll just buy a new boat for our empty boat lift at camp. Hmm, such wrenching issues.

Saturday, January 26, 2008

On Vacation

I haven't actually traveled anywhere, but my mind has certainly taken a hike on another trail. Classes started 2 weeks ago along with a pile of other obligations, some exciting, some trying, some mundane. I made a conscious choice to "avoid" myeloma in part because I know once the GRN163L trial starts there will be a potential Roswell Park overload brewing. The clinical trial finally got posted on clinicaltrials.gov ID: NCT00594126 The second arm has not "officially" started yet.

In the mean time, Happy Birthday Lu! She is now officially 2 years older than me. Hee Hee Hee. The not so little chillens threw Lu an amazing fondue feast that lasted 3 1/2 hours. I loved the active interactive communal atmosphere. The traditional Swiss "cheesy" part was only served with the pre-dinner bread and veggies. We then moved on to meat and pastas fondued in boiling broths and ended with decadent dark raspberry chocolate dipped fruit. My mouth drools just thinking about it. Another Happy Birthday to my dear friend Barb who will always be younger than me. Humm. I learned at her party from the Oud (lute) player that the word "lute" comes from Arabic العود (al-ʿūd), meaning a thin piece of wood. Before my charming wife took my name she could have been called, Lu Oud, or as we would have called her in grade school, Lulu Lute. She was a very thin little piece of Wood back then.

I started a health and longevity Tai Chi practice which I am finding both subtly difficult and rewardingly therapeutic. A wonderfully relaxing gentle form of exercise. Then there is the Healing Rhythms biofeedback "training for a happy mind and a healthy body." I highly recommend it, especially if you already own the Wild Divine (which I did). Lu borrowed a violin for me from school. I've been fiddling around with that. Boy I suck big time, but I am surely growing lots of new neurons these days.

Friday, January 11, 2008

Are You Listening to Music?

My wife just reminded me what my therapist keeps asking me. "Are you listening to music?" I forgot to include it in the LPC123 pre-clinical trial. She sent me a snip it referring to a Cleveland Clinic back pain study. That got wondering about quantitative immune response studies of which I found way to many to reference. In short, music (that you pick is slightly better) can produce significant changes in all kinds of quantifiable immune responses: POMS-scale, CD4+:CD8+ ratio, cortisol, and cortisol:DHEA ratio. "The intervention of music demonstrates communication between the mind and body." [ref] Gee go figure.

I used to play the viola 30 years ago. I bet I could generate some significant immune suppression if I play at the Gilda's wellness group talent show at the end of the month. Then again maybe it would be so hilarious that natural killer cell activity would increase. [ref] There is a great review article on "The Impact of Humor on Patients With Cancer"

Go listen to some music and have a good laugh!

Thursday, January 10, 2008

Doc Update

I actually recorded a 30 minute discussion with a dear friend who also happens to be my oncologist Tuesday. That statement alone is very special to me. Of course what we talked about was rather important as well. Despite the expanding hole in my head there is no meaningfully significant indicators of progression. So a bone marrow MRI as well as numerous pre-GRN163L clinical trial pokes, prods and pictures are coming soon. I had an email discussion yesterday about a primary myeloma indicator (myeloma cell protein expression) and how tons of factors which are mostly unknown can effect it. In short it is tough seeing a 1.5 inch hole on an x-ray, balancing that with no other indicators of progression and then going back to living a great life. Heck I played tennis this morning and actually think my day was productive. I just finished a phone interview about Gilda's Club. That got to my bone marrow.

On the purely dry and informative side. I'll be in the second cohort of patients in the clinical trial which starts February 11th. There have already been several significant responders on the GRN163L Chronic Lymphocytic Leukemia trial. One individual actually over responded causing tumor lysis (with no lasting complications). Being in the second cohort means I'll be getting a slightly higher dose than the first pioneers. The trial requires a lot of follow up blood work which translates to "waiting around" and several bone marrow taps. They don't seem to bother me so I'm certainly lucky there.

Between now and then I'll be on the LPC123 pre-clinical trial. It involves plenty of Qigong, curcumin, laughing, playing, birthday partying, and a bit of teaching. It is going to be a great semester. Unlike any other I've taught. I'm a different person.

Saturday, January 05, 2008

The Glorious Mundane

For the most part my life is made up of the rather normal mundane aspects of being. Eating, sleeping, cleaning, etc. Truly exceptional experiences are pretty rare, hence the adjective exceptional. When some part of my normality is taken away I find myself readjusting, remaking normal, with a renewed appreciation for what was unnoticed, taken for granted. A side effect of Velcade slowly crept into my sleep over the last month. Restless leg syndrome or in my case more technically termed "Nocturnal Leg Cramps" focused in the calves but present in the thighs and feet to varying degrees. After a few sleepless weeks with countless attempts at relief ranging from prescriptions, supplements, massage, spas and heat packs to exercise to just plan old staying up all night and sleeping during the day I have been sleeping again. Fourteen hours last night - ye ha. Qigong and a walking meditation seem to have helped the most, but like any good scientist I can't say that with much certainty. I haven't taken Velcade in almost a month and maybe time is all I needed. Well whatever the cause the glorious mundane activity of a warm spa followed by a peaceful sleep is absolutely angelic.

May the angels guide, protect and shower you with love tonight. Sweet dreams.