An upswing

I started treatment again this week, and it appears to be doing some good.  There have been several changes and additions to my medication and treatment course so it is hard to say exactly what is working and what is not.  The bottom line is I was in constant and dibilitating pain last week, and now things are looking a little up with a lot less pain.  I hope that this upswing in the way I feel continues and translates into scans of shrinking tumors the next time I get imaged, but this could turn sour just as fast as it has before too.  I'm just happy I can bend down to tie my shoes again and be able to get in and out of bed/chairs/cars without the multistep, piercingly painful process.  

The thing that I'm the most grateful for in my very recent improvement over the last few days is my ability to eat.  I've had constant nausea and no hunger for the past three weeks or so, and have been eating small bowls of cheerio's more than anything else.  I lost a good ten pounds or so from where I was during this process, and can't afford to lose much more by my counting.  Over the past couple of days, I've been able to eat larger portions of regular food and even enjoyed most of a steak sandwich for lunch.  Not being to eat, not wanting to eat, even though you know you need to eat is harder and more painful than someone would ever guess.

The changes to my treatment leading to these improvements include radiation, chemo, new pain killers, and new anti-nausea meds.  The radiation consisted of single high power hits to the large tumor on my head and a spot on my left side that's been pretty painful.  The worst part of radiation was the preparation where they made a mask of my face from a formable plastic mesh which took about 15 minutes to harden while completely enclosing my face preventing me from opening my eyes and restricting my breathing.  This all took place on an extremely uncomfortable posiition on a flat table for the CT machine.  The actual radiation didn't take that long, and I had them cut out holes for my mouth and nose.  It's hard to tell whether it is the radiation or chemo working, but my head tumor has already amazingly shrunk in size from a large goose egg to a small bump.  It remains to be seen whether the outer results match what is going on in the inner half of the tumor (as seen from the MRI).  

The chemo regimen they put me on consisted of two new drugs and one that I've had before.  The two new ones came as a pill and as a fluid to be drank with grape juice (why grape juice I have no idea).  It was simplier having treatment in this form than muliti-hour IV, but it made my nausea considerably worse, so we transitioned back to IV for my last dose on Thursday.  I greatly preferred the IV route and was able to get a decent lunch and nap in which did wonders.  

The next step coming up is scans and more chemo in a couple of weeks.  But as we know, something will probably come up to upset that established order.  I'm just hoping that I will be ok to get back to some normalcy in the short term and be able to keep my mobility up for the coming holidays.  Until then, I'm going to enjoy the company of my family and friends the best I can while I deal with the bullshit that is cancer.  

   

MRI of head tumor

There and back again

Once again, my treatment plan has dramatically changed.  I was supposed to start treatment with an experimental drug on Friday after going through a short series of tests.  Tests which have been done before at WashU only a short time before heading over to the NIH.  The first red flag to pop up was the levels of a certain liver enzyme that they test for in my blood work.  The levels were perfectly normal over a few days before hand, but were consistently twice as high (possibly indicating liver damage) after 3 blood draws at the NIH over two days.  The scans didn't show any liver damage, I haven't had a drink in over a month, and there is no reason for the levels to spike out of no where so this was truly bizarre.  However, the blood tests weren't nearly as concerning as the "haze" found on my head CT here.  The clinical trial protocol states a patient can't start the trial if they have an untreated brain tumor which the NIH docs that this haze might be.  Although the MRI the next morning proved that the haze was just nothing, it was a very scary 24 hours waiting to find out.  

Even though I don't have any tumors in my brain, it turns out I have several in my skull hitting up against the membrane (dura) that surrounds my brain.  I've had a bump on the back of my head for awhile that got bigger and smaller without the docs really knowing for sure whether it was a tumor or from some kind of injury.  At first I thought for sure it was from the cast I had to lay in for radiation, but the longer it latest, the more confident we were that it was a tumor.  It has been getting substantially bigger and more sensitive recently, and they were thinking about radiating.  That got put off once the clinical trial plans started building up since I can't be undergoing radiation while in the trial.  The MRI showed that the tumor was worse than it appeared in the other scans with it reaching from the dura to the skin.  This makes them worried it could break through the skin which would be bad for I'm guessing many reasons although the NIH docs didn't specify.  They also believe this big head tumor seeded the four others growing on the inside of my skull.  My other tumors throughout my body have been growing fairly rapidly lately as well making the overall state very concerning.  So after several NIH docs combined with my regular docs talked it over, they decided the best course for me is to return to St. Louis for combined radiation and chemo.

Although it is disappointing, I agree that this is the safest route.  My cancer has responded fairly well to radiation during my first round of treatment.  The chemo regimen that I will be put on has been tested and has a pretty good success rate as a second line treatment as well.  On the other hand, only 6 or so people have been treated for only a short time with the experimental trial drug.  For all we know, it might not have any effect on me which I can't afford right now with the rate my tumors are advancing.  Also, the NIH docs will be amending the trial protocol so that I will be able to start the trial when my tumors are in a more stable state.  I'm guessing this would be a few months down the line at best.  And even though I never started treatment, I am somehow still a part of the trial and will have any subsequent travel to D.C. paid for by the NIH.  Overall, it was beneficial for me to make the trip since we learned more about the current state of my disease, have a few more experts in my corner to advise on my treatment, and was able to have a bit of fun over here as well.  

The fun Anna and I had consisted of fairly short intervals in between time spent at the hospital.  We were able to have dinner with Anna's cousin Sasha on Friday night, and then we had lunch with my friend Maria from college before we flew out on Saturday.  Although I wasn't able to eat much due to my poor appetite and general gut ache, it was great conversation and a welcome break from cancer related activities.  We were also able to go to an art museum in D.C. on Wednesday which was nice.  The overall few combined hours of these activities saved Anna's and my sanity for the trip.

There were several frustrating things about the trip.  First of all, we are definitely not used to having to deal with security.  Once we got our permanent passes it wasn't too bad, but being questioned about our coming and going in and our of the NIH campus was board line ridiculous.  The cab company we had to depend on to get around was awful.  The wait averaged 30 minutes and the drivers didn't listen or know where they were going half the time.  And even though it was great being able to stay at the Children's Inn at the NIH for free, we felt very out of place in the midst of everyone else who consisted of very young families. 

By far the hardest part has been my declining mobility and increasing pain.  It is a constant challenge to get in and out of bed, chairs, and cars.  Unless I'm in the several peak hours of pain meds, I am unable to pick things off the floor without my lower back erupting in pain.  I am essentially in a constant degree of pain which is the worst at night and in the morning.  Laying down is about the only relief I get unless I load up on the pain meds and am in the 4 hour or so window to peak drug activity.  Then I'm able to walk and move around close to normal.  A few doses of IV pain meds this afternoon combined with the sleep they induced/enabled really helped me out today.  I will be starting methadone tomorrow which based on what I've read will better control my pain over longer periods of time.  Even better would be if the treatment I'll start getting on Monday will be effective and reduce my pain like it has in the past.  Treatment time will be short since the one chemo drug is a short injection and the other two are oral pills.  I'll be having radiation at the same time which I should be getting mapped out for tomorrow.  Hopefully this will be the plan that finally sticks.  

TV and Travel

The days since my last post have either been very slow, boring, and painful or hectic and crazy.  The former were due to severe pelvic pain and constipation where my mobility was greatly reduced and I was essentially restrained to my apartment for most of the day.  Both have been largely resolved with more and better medication.  It's been pretty bizarre how these things pop up since if it's not one side effect then another shows up.  For instance, I started out having terrible back pain which carried on for months, but it hasn't bothered me much at all for a few months now.  The differences from day to day or even morning to night can be huge too.  Nausea, appetite, pain, mobility, bowel function...it's all a crap shoot.  

The hectic days were when I was bouncing around the hospital.  The hospital visits were instigated by my pain leading to a variety of tests/scans.  I had a PET and MRI to see if my cancer was progressing more rapidly than expected.  Some spots were stable, but others were growing fairly rapidly.  The metastatic tumors in my lower lung are still on the small side, but they got substantially bigger.  The MRI showed that the majority of my pelvic bone marrow has been replaced by cancer except for the region where I got radiated.  The docs figured the pressure caused by the cancer was causing my pain.  They put me on fentanyl patches and gave me an epidural steriod injection which has been helping considerably with the pain.  

The strangest day is when I got contacted by a CNN producer around noon and ended up being interviewed by Piers Morgan later that night.  One of my college friends, Amanda Yanchury, tweeted about how the NIH wasn't able to take any more clinical trial patients and specifically referenced me.  Somehow, the producer came across her tweet in the social media universe and decided I would be a good story to tell.  After a lengthy and emotional phone interview, I wasn't sure if I could be coherent on TV and make it through the interview.  I was convinced to go on the show after thinking about it a lot and the support of Anna, Van Tine, and several others.  The interview was a lot easier and shorter than expected, and I'm very happy that Dr. Van Tine was there with me to help answer questions and take some of the pressure off me.  Hopefully my interview helped put a face on some of consequences of the shutdown and help other patients out there like me.  I wish that they can be as fortunate as me in getting into their proposed clinical trials.  (it's baffling and repulsive how the bullshit of national politics can affect the life and death decisions between doctors and their patients).  

But luckily enough, I was somehow able to get into my trial anyway in the face of this obstacle.  This is almost exclusively due to the hard and tireless work of Dr. Van Tine.  I'm not sure how he works his magic, but I suspect he might have a little elf in his family tree.  I was talking to him today to make sure everything is set for me to head out, and we decided that it was about meant to be.  For instance, on Friday I was supposed to get a shot to start the process of bone marrow collection.  However, it accidentally got canceled along with the chemo dose, so I had to wait an hour for the confusion to be figured out and the drug to be brought up.  The bone marrow transplant plan got tossed to the curb once Brian texted me to say "NIH on the phone, don't get shot".  This was about 5 minutes before the nurses brought me back to get the shot which would have prevented me from starting the trial this week.  More importantly, I am thankful for Brian's foresight to start the process of getting me started paperwork wise in the trial over a month ago.  

Anna and I are flying out tomorrow morning for D.C. en route to the NIH in Bethesda.  I will get a variety of tests and scans on Thursday, and I believe I will start treatment on Friday.  Treatment consists of an IV drip into my port of the experimental drug which has been shown to indirectly but effectively inhibiting the mutated protein driving my cancer.  Treatment will be for 6 hours at a time over 7 days which is pretty similar to my previous treatments.  However, I'm told the side effects associated with this drug are pretty minimal so I should be feeling pretty good while I'm there.  I'll be staying at the Children's Inn Wednesday and Thursday nights which is essentially a free cancer kid motel.  From then on, I'll be an inpatient and will be staying/eating/etc in the hospital.  The trip has been made a lot less worriesome by CJ's Journey who set us up with plane tickets and a generous supply of travel funds today.  Brian thinks that I should start feeling a difference in the first month on whether the trial is working for me or not.  I'm feeling really good today (at least compared to the past two weeks) so hopefully this starts a streak that the trial keeps going.

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 http://www.cjsjourney.org/.

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.  

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.