Friday, July 03, 2015

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 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...

Thursday, July 02, 2015

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.

Wednesday, July 01, 2015

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?

Thursday, April 16, 2015

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.