Da First Day

Being the not so energetic guy, a bit nauseous, really sleepy and just plain old lazy here you have a recap by my charming, loving and most generous wife, Lu.

DMSO – this is the chemical which Scott’s stems cells were preserved in for the last 2 years….He, of course, cannot smell it and they put peppermint oil all around the room in little bowls to override the odor.   Some say the smell resembles garlic…well, I love the smell of garlic, but not THIS garlic!!   I’ve brought in a plug in diffuser and have Thieves essential oil in it see if that helps…

“In cryobiology DMSO has been used as a cryoprotectant and is still an important constituent of cryoprotectant vitrification mixtures used to preserve organs, tissues, and cell suspensions. Without it, up to 90% of frozen cells will become inactive. It is particularly important in the freezing and long-term storage of embryonic stem cells and hematopoietic stem cells, which are often frozen in a mixture of 10% DMSO, a freezing medium, and 30% fetal bovine serum. In the cryogenic freezing of heteroploid cell lines (MDCK, VERO, etc.) a mixture of 10% DMSO with 90% EMEM (70% EMEM + 30% fetal bovine serum + antibiotic mixture) is used. As part of an autologous bone marrow transplant the DMSO is re-infused along with the patient’s own hematopoietic stem cells
Update:  He’s still fine…blood counts are dropping as expected which means the Melphalan is working.  
Dr. Sher said the drug should hit this weekend and Day 7 is when the bigger stuff will hit (they are careful not to tell us what that really means…and he (Dr Sher) just keeps telling me to rest as much as possible  because my job hasn’t begun yet….\uD83D\uDE31.  Keep in mind, transplant day is Day 0 so today is Day 1…..no patient has ever had the “Radioactive Isotope/Cytoxan/Melphalan” cocktail so this should be interesting. Maybe the cure????  All I know is that he looked very different right after the transplant and had a vitality and energy about him that I have not seen in a very long time!!   YAY GOD!!!
A Room with a View…yes, I brought him his birding scope to watch the Osprey in the tree and all the other birds that hang around the pond avoiding the Gator…

Rebirth Day 0

A Beautiful Birthday

A Mayo Sunset July 2nd, ’15

 is slowly coming to an end. Around noon today I received ~3.5 million of my own blood producing stem cells that have been frozen for a bit over 2 years here at Mayo Jacksonville. It is with a bit glee that I must admit the physical part has been a breeze. There is an unfamiliar emotion associated with free falling into the unknown. It’s an odd juxtaposition of the very low vibration of insecurity, guilt and unworthiness mixed with a much more pleasant enthusiasm and positive expectation born of a belief or deeper knowledge I am unable to articulate. The hundreds of people all over the world, not to mention all the energy I’m totally unfamiliar with pouring over me is disorienting.

A Beaming Olivia Grace

 My dear Olivia Grace does an inspiring expression of beauty as she shields me from the power light on the TV. How about Jupiter and Venus passing by each other in the early evening sunset. Being grateful of the beauty and caring people surrounding me feels so joyful. An Amazing Grace given, not earned, just unconditional. If you have read this far you have my deepest gratitude and loving appreciation. Thanks for being a friend.

Reboot Day 0

Earlier today I started my bone marrow reboot at 11 am (Yes it’s July 1st so I tip my hat in honor of my friends celebrating Canada’s birthday). The wonderful drug traveling through my body and soul is wiping out my blood cells. Every last one of those insidious myeloma cells is either already dead or soon will be. I’ll do my best to give you a glimpse into my journey as it unfolds. There is no map. Let go and let the Universe unfold a new reality for me and everyone in my life. Just to give you and idea of how wonderfully geeky I really am you can read “Physicists at The Australian National University (ANU) have conducted John Wheeler’s delayed-choice thought experiment, which involves a moving object that is given the choice to act like a particle or a wave. Wheeler’s experiment then asks – at which point does the object decide?” Think of that guy over there on the right side of the page as a particle in the Universe. I don’t exist until I am observed. What reality shall we create? Let’s aim high. Perfect health guided by love, grace, gratitude and universal truths. Now who wouldn’t want to laugh and share a wonderful dinner with that guy?

More Trials

So I’ve added a couple more trials to an ever growing list. At last count I’ve had 12 different regimens over the last 10+ years half of which were clinical trials. There is definitely a “Aren’t you special.” feedback from all the attention clinical trial patients get.

The ABT-199 trial ended after 5 cycles with evidence of progression seen via imaging (PET/CT). I have a tough clone to clobber. Illusive secretive beast that stops expressing any evidence of progression in the blood. Instead it just munches away at my bones with a relentlous incideous appetite.

There is no doubt that the Oprozomib trial was not worth the extra attention. The first cycle (2 weeks) was tolerable but the second was a total GI, bedridden disaster with disease progression just to add to the insult. Here’s a mouthful for those MM geeks: Oprozomib is an orally-administered epoxyketone proteasome inhibitor, similar to, but distinct from carfilzomib. 

The current experiment is a Phase I Open label, Dose Escalation Study of I-131-CLR1404. I just happen to be the first MM patient enrolled in this study. Here’s the MM geek excerpt from the press release link:

“I-131-CLR1404 is a small-molecule, broad-spectrum, cancer-targeted radiopharmaceutical comprised of a proprietary optimized phospholipid ether (PLE) analog, acting as a cancer-targeted delivery and retention vehicle, covalently labeled with iodine-131, a cytotoxic radioisotope that is already commonly used to treat thyroid and other cancer types. I-131-CLR1404 is engineered to combine an intracellular radiation mechanism of cancer cell killing with targeted delivery to a wide range of malignant tumor types. Preclinical models have also demonstrated selective uptake and retention in cancer stem cells, suggesting the potential for longer lasting cancer remission. I-131-CLR1404 has been granted orphan drug designation from the U.S. Food and Drug Administration for the treatment of multiple myeloma.”

Being a whopping 2 square meters in area I received  modest dose of I-131-CLR1404 a couple days ago. It was a non-event and continues to be so thankfully. Time will tell if this adds to a total and complete response in combination with high dose chemo prior to a stem cell transplant later this summer.

Stay tuned for another semi-annual update.

ABT-199 Trial

I started a clinical trial of ABT-199 3 weeks ago. (sorta technical Myeloma Beacon EHA 2013 Congress Abstract P210 (Poster Presentation)) It is in combination with Velcade and Dex. The Dex is being reduced thank you very much!

Three weeks on the protocol produced a 37% drop in my myeloma marker (Igg-Lambda Free Light Chains).

It was easy easy easy just time consuming. I like to view it as a behaviour disorder which compels me to drive almost an hour to an overpriced internet cafe’. I alway bring a book and laptop and don’t bore easily so Life is good!

The disorder then morphs into the Dex Pirate from which all living creatures should beware.

I’ve been known to cry, laugh, explode and threaten all manor of pirate inspired tortures or gruesome methods of death.

Life is getting better. The first cycle of most clinical trials is usually very time consuming. I spent 3 days in the hospital being watched, a couple days in the clinic being blood tested. That’s over as are the weekly doctors visits. Now it’s just once every 3 week cycle and a couple Velcade shots and dear ol’ Dex twice a week for the first 2 of the 3 week cycle.

Easy peasy! Scotty needs to get the transporter working again. I’ve been slacking off while in dry dock here in Florida.

Biannual Review

It is amazing to me that I can go 2 years without thinking about Laughing Plasma Cells. After the last post about my newly repaired arm I never went back to work. Instead I retired, moved to Amelia Island and am working on reinventing myself. As for the plumbers tape and drywall screws the repair was nothing short of amazing. Being a southpaw again has improved both my handwriting and my quality of life.

I just do the myeloma thing. It does do me on occasion but life is good. I did a few clinical trials, a few slightly less common combinations and all kinds of whacky stuff as well. I even got John of God involved.

After a little time off to clear the old chemicals out I’ll try another clinical trial using an immune modulator,  second mitochondrial-derived activator of caspases (SMAC) mimetic LCL161. (Isn’t cut and paste wonderful – I hope to never actually have to remember or say that outloud.) In short SMAC, although not related to heroine, is capable of screwing with cell death programming. When the smac be flowing my way I don’t be caring no more.

On that note I leave this blog be for a few more years. Cheers

Plumbers Tape

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

Plumbers Tape

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

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

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

Holiday Cheer

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

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

Happy Holidays :-)

Status Quo

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


Random Number: 8237

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