Friday, September 27, 2013

Options A+B=Plan 4

I had scans last Friday and met with Van Tine on Wednesday to go over them.  It looked like my tumors didn't respond to the last two rounds of chemo since they stayed roughly the same size.  Even worse was that I have new tumors popping up in my lung.  It was hard to tell what was going on in my pelvic tumors since I recently had the shot which stimulates my bone marrow to churn out new cells to replace the ones that the previous round of chemo killed off.  The conclusion was "chemo is not working, your cancer isn't playing by the normal rules, your chances of a cure are greatly reduced, we're going to try something new, don't panic yet".

The new plan is to start the bone marrow transplant process by collecting my bone marrow stem cells and head to D.C. for the clinical trial.  I'll start getting shots to stimulate my stem cells to ramp up production starting next Friday with a shot everyday until Monday.  I'll get an additional shot on Monday so that the bone stem cells get released into my blood.  Then, starting on Tuesday, they will start collecting my stem cells through a catheter that will be implanted the preceding Friday.  They will sort the stem cells out in a continuous process that will run my outgoing blood through a machine which will pick out and keep the stem cells.  Then the rest of my blood will get pumped back into me in a process that will likely take several days.  The marrow transplant docs will save away my stem cells until everyone decides its the right time to do the high dose chemo regimen and following transplant back into me.  As it turns out, the chemo regimen is different than the one I've been getting before and seems to only be used in conjunction with a bone marrow transplant.  

The clinical trial process will begin soon as well, but it remains to be seen whether I will be officially accepted into it or not.  First, (I think) I have to fly out there for an initial consulation to make sure I am a good candidate for the trial.  From what I've gathered, I will be out there for two days for their doctors to look me up and down.  The NIH will pay for my travel and arrangements if I get accepted to the trial, and a local sarcoma charity (CJ's Journey) is paying for my first trip out.  CJ's Journey is also paying for Anna to come out there with me which is a good thing for both our sakes.  It remains to be seen when all of this will happen since Van Tine is currently trying to orchestrate between the NIH, the bone marrow team, and radiation oncology (to keep my cancer under control) to figure out who will have me when.  

On a seperate note, I want to make a pitch for scientific research.  I've been thinking of doing this for awhile, but I think this is the right time since Van Tine officially declared me an experiment due to my cancer not playing by the currently known rules.  Please support science any way you can politically, financially, socially, etc.  It's by no means perfect, but it drives advances in health care, technology, the economy, and improvements in our basic way of life.  To be more specific, I want to make a pitch for CJ's Journey in support of their support of me.  All they needed to know was that I needed a flight to D.C. for this trial to send me an email the following day saying the will pay for everything.  All I need to do is figure out the costs and they will mail me a Visa card to cover the costs.  I've been to one of their events previously, and got to meet the hard working and generous people who put together and run this small, but impactful local charity.  I know they've paid for significant others to fly out with the patients before, but I was pleasantly suprised and very grateful to read in the email that they would cover Anna's expenses too without me having to ask.  CJ's Journey also directly supports Van Tine's research and clinical trials of sarcoma as well making it a very well rounded charity to support.  If you want to check them out or make a donation, you can find them at


  1. Keeping you in our thoughts and prayers buddy! L/R

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  3. Having issues trying to leave a comment, but we are thinking about you, Greg!
    - Jas and Aric.

  4. Thinking about you Greg! Hoping the government shutdown doesn't last much longer so that you can proceed with your plans at the NIH.