2011-11-09: New treatment? Still maybe...

To Blog followers (and family members),

I don't have good news, but I don't really have bad news either. It is more like no news...

I guess it is more bad than good, but it isn't a "no treatment" ruling yet, so that's good news. (Maybe...)

• I'm not eligible for the newly government approved treatment / chemo drug. Without even testing if I have the required cancer marker in my esophageal tissue, I've been disqualified by the small print requirements. I have to be on my first or second round of chemo to qualify. I'm on my fifth or so round, so I have too much residual tissue / organ damage from being on chemo so long that I don't qualify.
• Monday, I was disqualified for CyberKnife as well due to a number of concerns.
• I was also presented with about 6 other options, then systematically I was dissuaded from attempting to pursue those options because of separate concerns in each treatment's side-effects and risks.

Well if nothing else, I came out of the meeting more educated.

Note: My biggest risk right now is the "capsule", or outer sack lining of the liver, rupturing or leaking fluid into my abdomen. FYI: Fluid = blood. So if I start leaking from the liver, I've only likely got a few weeks to live at that point. So all discussion at this point is to prevent that from happening. Right now I'm receiving pain meds to help me through the day. They're working. Last few days I've been doing errands and going to the library on my bicycle instead of being bed-ridden all day due to pain.

After the discussion, there ended up being three treatments that we were going to "explore". No guarantee any would be performed, but they would investigate my scans, and the physics involved to see if the treatments were feasible. They are:

• Low intensity general radiation, similar to what was performed on my chest after my July 2010 surgery, but at a much lower dosage. Problem, they'd have to train me to breath so that the diaphram can push my liver away from my heart during the procedure. There is only a small fatty wall between my largest liver tumor and my heart. They figure this may be my best bet to pursue as they should be able to avoid the gut, and only the bottom part of my right lung would also receive radiation. [update Wed Nov 09] I received a call from the doctor saying that they don't think that the breathing would be sufficient to remove the risk. The general radiation would not be accurate enough. So they are discouraging this method as well.
• Radio Frequency Ablation (RFA). This is where they stick rods into the tumors and make them vibrate to generate heat. Essentially microwave cooking the tumor from the inside out. The concern here is that they make large holes in the liver capsule (lining) and the tumors are so large, that they can't cook the whole thing they way they usually do. Instead, they'd have to poke multiple holes, and cook multiple tumors. RFA requires a radiologist, not my radiation oncologist, so my doctor has referred my case to another doctor to review my scans to see if this is physically possible. He doesn't think it will be.
• Embolization. For this, they would stick a catheter / tube up from my leg to my liver and traverse the vast array of artery capillaries. They would then purposefully "clog" the capillaries that are feeding my tumors. The purpose would be to starve the tumors of needed oxygen and nutrients from the blood. They would shrink and pressure on the liver lining would be relieved (hopefully giving me a few months of reduced pain). Problems: often hit and miss as you have to traverse a 3D maze and put goop in to clot the right areas. Also requires a radiologist, and a lot of their time planning, since it is so complicated. So this has also been passed on to another doctor to see what their opinion is from my scans.

As per the "update Wed Nov 09" that says that general radiation is unlikely to work for me, they're pursuing another option to research in parallel while we're waiting on the feedback from the radiologists looking into RFA and Embolization. Which brings us back to ...

CyberKnife

• On the brain is easy. There is no collateral damage from crisscrossing beams of radiation, and the tumor is so differentiated from the surrounding tissue that it is its own positional marker when performing positional x-rays to adjust for breathing and motion by the patient. However, the liver, x-ray isn't good enough, nor is the contrast sufficient with all the other organs, ribs, etc. in the way. So, the doctors have to implant artificial markers in and around the tumors in order to be sure that breathing and motion don't interfere with what they are zapping.
  
• FYI: CyberKnife is WAY more powerful than general radiation. Discussion was about cracking ribs that are in the way of the liver (liver tumors are under last two ribs, not free and clear of ribs) due to the high dose of radiation. Damage to the lower lung (which overlaps the liver / ribs in the same area). Damage to the heart that is adjacent to the largest tumor.
   
• On top of that, the tumors are larger than normally done by CyberKnife. So more markers are required and it takes more scan time, so more residual radiation to surrounding tissue.
  
• Note: each marker insertion requires additional penetration of the liver capsule (lining). This raises the risk of infection, bleeding and unintentionally stabbing the lung with the marker insertion needle (since the lung is hanging out nearby).
  
• Ok, having said all this bad stuff about CyberKnife, it is WAY more accurate than general radiation. So it can overcome the proximity to the heart problem. They are also considering running it at radiation dosages much lower than they normally would (I'm abnormal in all ways for a typical patient they treat, so almost everything is an experiment with me...). The lower dosage with increased accuracy may be sufficient to shrink the tumors and relieve pressure on the liver in a palliative measure. They wouldn't be using normal tumor killing radiation dosage levels because of all the risks already mentioned. As stated before, their goal is "quality of life" in my last few months, not "cure". I may not have 6 months of recovery time for a "cure" type solution, at least not 6 months of being in more pain due to the treatment than I would have been from the cause.
  
• 'So I gave them the go-ahead to pursue a low dose CyberKnife.

I'll be given the CyberKnife markers, then a week for the swelling to subside (and therefore their movement inside me due to swelling.) Once the markers are stable in their position, they can begin planning a CyberKnife program. Meanwhile, we await the radiologist's analysis of the RFA and Embolization.

For now, none of this is happening... it is all "to be planned". And may at any time be cancelled. So I'm in a holding pattern.

In the mean time, I'm gaining weight due to an increased appetite and due to being able to take some sugar now that the 24 hr pain killer "Hydromorph Contin" is constipating (counteracts the sugar dumping, and I retain food longer to get more nourishment out of it). Also, the little bit of Dexamethasone I'm on (yes I've been on that now since the seizure) increases my appetite as well. It also keeps me up well past Midnight giving me an extra meal time. So people say I look much healthier now... (read as "less emaciated").

Enough ramble for now. I'll update more when I know more. For now... it's day by day hoping my liver lining doesn't rip.

Regards,
Shane