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

Thursday, September 12, 2013

More chemo for now with a couple of options in sight

I am about to finish the last day of my second chemo round with the new formulation.  This round has been the best so far with minimal side effects.  I'm more tired than usual and chemo taste has started to come on a bit.  However, I haven't had much of any nausea or vomiting since I started treatment on Monday.  My recurring pelvic pain has also subsided as well which I'm all attributing to the re-addition of steroids to my chemo pretreatment.  The actual time spent in treatment has been going pretty quickly since I have regained my previous undergrad ability to sleep on command.  I literally sit in the chair, mess around on my iPad a bit until they hook me up, and am essentially asleep until they tell me that I'm done.  I think I had my mouth open half the time and made occasional noises today as I took my 3 hr nap.  I don't think anyone else in the pod minded though.

My meeting last week with Dr. Abboud, the bone marrow transplant doc, was interesting.  I learned a lot about how the process would happen if it will happen.  I also learned I have to jump through a lot of hoops before we get close to taking out any of my blood stem cells.  This initial meeting was necessary not just for me, but to get the ball rolling with the insurance company.  Also, I had to get my sister's info to them so they can be tested to see if they could donate to me in the very unlikely chance I would need it.  This would most likely be the case if I developed a secondary blood cancer (like a leukemia).  Besides the paperwork, I need to get a bunch of various tests to see how good of condition I am in to undergo the whole procedure.  Then they would take out my stem cells through a blood sorting machine after injecting me with drugs so that I overproduce the stem cells and release them from the marrow into my blood stem.  The collection and sorting would take place over several hours and possibly over several days.  At some point down the line, days to weeks later, I would get the high dose chemo over a week, have the saved stem cells injected back into me, and recover in the hospital for a few weeks until I'm able to return to the germ infested world.  

Another option that is on the line is a NIH clinical trial that is going on in Washington D.C.  Some researchers, performing biomedical research kinda like me (only their work came out with something more clinically useful than anything I will produce), discovered a molecule which can bind to a RNA helicase to disrupt it from interacting with the mutated protein that drives my cancer.  Basically, the drug has been shown to prevent the cancer from growing.  There have only been a few papers about the drug so far, but appears fairly promising from what I have read.  And the good news is that I have the right genetic mutation to make me eligible for the trial, and my paperwork is proceeding in case Van Tine thinks that's the best route for me.  If that happens, it appears that I will be flying to D.C. for a week every few weeks for treatment.  But that is a long ways off down a distant and perhaps possible yellow brick road.  I would greatly prefer if my current treatment would work well since being on a clinical trial is never a good thing since that means the regular ways to deal with the disease aren't working, no one knows whether the trial drug will work, and you're not sure whether you are actually getting the trial drug or the placebo.  

What will happen in the immediate future are bone marrow related tests, more meetings with the docs, upcoming scans, and more chemo in three weeks.  

Tuesday, September 3, 2013

A week off

I was discharged from the hospital last Tuesday and have been slowly getting back to normal since then.  Nausea was the first to go, and I've been regaining my appetite a little with each day.  To balance that out, I've now lost the ability to stay awake much past 9 pm and my morning pelvic pain is returning.  The nice thing is that I feel fine from about 10 am to 6 pm.  It's been great being able to relax and work regular days without having to stop by the hospital for any reason.  However, that streak ends tomorrow with my appointment with Dr. Abboud, the newest member of the medical team.  He specializes in bone marrow transplants, and I will be meeting with him to discuss my possible self donation and transplant that I've talked about in previous posts.  Then I have a regular appt to check my blood counts on Thursday with my next round of chemo starting on Monday.  Hopefully things keep looking up and forward with the current plan.