2011-11-29: CyberKnife planning scheduled.

FYI: Official planning date set. CyberKnife planning (CT + mask fitting) scheduled for Thu Dec 1st. CyberKnife treatment to occur 1-2 wks after planning (planning takes at least a week due to determining in 3D what tissue to zap and what to preserve).

-- Shane

2011-11-24: Official word on brain MRI from Nov 17th

Ok, saw the brain oncologist today and got the official word (instead of 2nd hand from a phone call).

Good News:
The old April tumor isn't "reactivated". There is some brain tissue swelling around the tumor, but apparently that is expected for as long as a year after CyberKnife treatment.

Bad News:
6 new tumors in the brain. That brings the total to 8 now. These 6 new tumors are all less than 5mm (0.5cm) in diameter with many only 2mm (0.2cm).

Doctor recommended (as expected) whole brain radiation. However, once we explained the situation with my liver and lungs we agreed to postpone any treatment for now in favour of treating the more pressing liver pain.

We've rescheduled an MRI in Jan to see if any are growing aggressively. He's willing to consider CyberKnife on quick growing tumors as an option to preserve quality of life in the short term, vs. long term "cure" of killing all tumors with full brain radiation.

I haven't given up the option of full brain radiation. If the liver pain is resolved in Dec and the Jan MRI shows even more tumors, then I may consider full brain radiation instead of the threat of my brain being over-run by cancer tissue. Apparently full brain radiation has a good success rate vs. small tumors, but not large ones. Also, if I do get full brain radiation, there will be no escaping the extreme fatigue side-effect. However, the other side-effects are "rare"; though I don't consider 1 in 10 rare... lol

Regards,
Shane

2011-11-24: Kidney and CyberKnife Update, correction about liver rupture timeline

Talked to my radiation oncologist today. Here's some updates:

Kidney Update

• Apparently the ultrasound didn't see anything in either kidney or my bladder, or in the surrounding plumbing that may indicate the left side pain I've felt for the past few weeks. I may be feeling "referent" pain from another source; possibly the liver or the lymph node near the kidney.
• This unfortunately (or fortunately because no new problems?) means that there isn't any steps they can taken to solve that left side pain using the equivalent of a pipe-cleaner solution that they had suggested. (If vein was clogged and causing pain, pipe-cleaner (catheter) to unclog it might have relieved pain.)

Cyber Knife Update

• They like to wait 10 days after tracer/marker insertion (to ensure tracer movement due to swelling stops) before doing the CT scans and mask creation that begins the "planning" stage. So 10 days equals mid-week next week. I'm expecting a call of a date from the scheduling person soon to say exact day / time.
• The actual Cyber Knife operation usually takes at least 1 week after the planning scans are done to give time for the actual mathematical 3D planning required to target the right tissue (tumors) inside the target (liver) to a millimeter (mm) accuracy. So the week after next would be the soonest I can expect a date/time for the actual radiation to be applied.

Correction regarding my liver

• I may have made the following statement, either in person (definitely) or in my blog (not sure) but it is wrong. The statement I was making was, "If my liver capsule (lining) ruptures then I will only have at most 2 weeks left to live."
• I apparently picked up this time schedule from an isolated case where the person whose liver did rupture hadn't yet been diagnosed with cancer, and when the rupture occurred was not treated in a timely fashion allowing many days of internal bleeding before being treated.
• In my recent research, I could not find another case that had as short a time-line as that 2 week case. In all other cases I've found, the individuals lasted many months (or in some cases years) after surgery was able to repair the rupture/tear and suction out any leaked fluid.

So in summary, if I've hinted that I may be lucky to reach Christmas 2011 due to the threat of my liver rupturing, then I appologize. I was working with invalid assumptions and Christmas definitely looks doable, though lasting until the end of the kids' school year may be more of a challenge.

My goal is still to last until Kaye finishes her schooling in Dec of 2012 (at least). Though that is likely a very optimistic goal at this point.

Regards,
Shane

2011-11-22: Recovering from tracers. More bad news.

Recovering from Tracer insertion surgery:
» I'm recovering well from the tracer insertion. It doesn't hurt as much today as yesterday. I didn't require any breakthrough pain meds today (not like the tonnes of it yesterday). I'm not doing any lifting today, just taking it easy. Kaye took the day off school yesterday and today to watch me and make sure she does my lifting for me, not me. (Example: laundry needed to be done today, kids have karate tomorrow and their gi's weren't washed.)
» Thanks to mom and dad Boyce for bringing stew last night. The family enjoyed it.

More bad news (new brain tumor activity):
» The brain doctor's nurse called about my MRI last week Thursday. It unfortunately shows more tumor growth (additional tumor(s)) and that there is activity in an old tumor in my left lobe (so the first 2cm tumor's looking alive again, probably the cause of the seizure).

» I was talking to the doctor's nurse over the phone, so she could only give me general info, no specifics. I'll find out on my doctor's appointment on Monday. I think they wanted to see me earlier this week and to possibly start immediate full brain radiation, but since I'm on paliative care, and my liver is a potential immediate life threat, I will concern myself with that first.

» To go on full brain radiation would fatigue me greatly and possibly turn me into a useless vegetable until it's over. If I am on my last legs due to my liver, I don't want to go out as a vegetable. So I will pass on the full brain radiation until something is done about my liver. If I'm given a number of months extra life from relief of liver pressure, then I'll consider worrying about my brain. As I'll have time to work on it.

» When asked if I was having any head-aches or anything, I said no. So the nurse says that after talking to me and hearing that I have no present symptoms, she understands my decision and we'll talk more (with the doctor) on Monday's 9am appointment at JCC.

Regards,
Shane

2011-11-21: CyberKnife tracer insertion done.

Two needles inserting two tracers / markers per needle is done. Two tracers per largest two tumors in the liver. Surgery was performed without any problems.

Neat factoid: The tracers are gold cylinders. The gold doesn't corrode, interact with radiation or drugs (is inert) and shows up in x-rays. My liver tumors are now expensive. lol

No follow-up appointments yet. I expect to be called soon once they have arranged them.

FYI:

• R.F.A. (radio frequency ablation) has been ruled out. Tumors are too large, as expected. 
• Also, the discussion I had with the radiologist gave me the impression that while embolisation may be a possible short term palliative care measure, it would be extremely painful for a few days after the procedure, and the tumors (being so large) would relatively quickly find another source of blood and would continue growing after that. So long term (longer than I have? or shorter? not sure) it is not a viable solution. Especially with all the smaller tumor lesions spread through the rest of my liver. 
• The radiologists believe that CyberKnife radiation is my best bet at this time.

Regards,
-- Shane

2011-11-18: Friday update (MRI & CyberKnife tracers)

Just an update.
Past:

• Thu Nov 17th: MRI of brain, no problems
• Fri Nov 18th: Blood work done for Monday's procedure, to make sure I'm ok for it.

Future:

• Mon Nov 21st: Surgical procedure: insertion of markers / tracers into liver tumors as required for impending CyberKnife procedure. Insertion will be assisted via ultrasound machine to get correct 3D placement of the markers. Also during this time slot, since insertion will be done by a radiologist, and since it will be under local anesthesia, I will be consulting with the doctor to see if I'm eligible for Radio Frequency Ablation or Embolisation.
• Mon Nov 21st: after my procedure, I have brain Dr. appointment to go over the results of last Thursday's MRI. The purpose of that MRI was to have higher detail than the CT scan that was done after my Oct 23rd seizure. Purpose is to see if a 3rd tumor has made an appearance, or if the swelling of my 1st tumor still hasn't gone away and it was the likely cause of the seizure. We'll see.

Regards,
-- Shane

2011-11-13: Apps this week

Some cancer related appointments this week (more coming in days / weeks to come).

1. Monday Nov 14: Ultrasound of my kidney region. They want to see if there is anything they can do for the pain in that area of my lower left back region and the ultrasound will give them a better picture of what they can do for me.
2. Thursday Nov 17: MRI of my brain. Check-up after my Oct 23rd seizure in higher detail than the CT that was done right after the seizure. They brain oncologist will be meeting with me Monday Nov 21st to go over this scan to see why I had a 2nd seizure.

That's it for now. Other than bi-weekly hydration and the usual family events (like kids karate, etc.)

I'm still waiting for appointment times for the CyberKnife marker insertion then "planning" and for meetings with the radiologists for the R.F.A. and Embolization feasibility analysis.

-- Shane

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

2011-11-03: New treatment? Maybe?

Just received a phone call from my oncologist tonight (Thu Nov 3rd).

She has given me some hope. I don't have a lot of details, and I will post again when I have proper spelling and specifications, but for now here's a very rough sketch of what they are looking into for me.

1. To help with pain in my liver, and as purely a palliative treatment option, not a cure, they are going to (finally) look into Cyber Knife on some of the tissue in my liver. The hope is to relieve some of the pressure to stop (or ease) the pain and reduce the risk of tearing the fluid sack surrounding the liver. This may give me a few more months at least. It's a start.
2. As recently as Tuesday Nov 1st, 2011 (2 days ago), the government has approved a new drug and clinical trials for it. I don't have the spelling yet, but here's what has to happen for me to be eligible for this new drug trial. First, a sample taken from my original esophageal cancer tissue (taken June 2010) must be analyzed and be shown to have a specific cancer "marker" or "trait". If it exhibits that trait, then I will be eligible for the new drug. The new drug would be taken in combination with other more traditional chemo drugs like Cisplatin (the nasty nauseating one).

Oh, on a side note, finally received a "lift chair". The thing is MASSIVE. They had to take back the first two chairs (that were more my size) due to first electrical problems (almost fried the delivery guy), then a mechanical problem (would have lifted you off the side of the chair, instead of in front of the chair) because the wood broke. So the 3rd choice was a chair for someone 7 feet tall and 350 lbs. Kaye (or a kid) and I can sit side by side in it and cuddle. So I'm not sure if it's as helpful as it would be if it was tailored to me, but it's free and I'm sure it will help more later on than if I didn't have it.

Note: I may also be trying "Essiac" soon, an herbal concoction favoured by many cancer patients as it is believed to boost the immune system. It's considered naturopathic in origin and clinical trials have been inconclusive. They all seem to agree that it isn't a harmful substance, and does exhibit some immune system benefits. So as for its cancer fighting ability, that purely depends on the person's own immune system to fight it off. But if you have cancer already, then that isn't guaranteed to work in anyone by any stretch of the imagination.

Regards,
Shane

2011-11-01: Palliative care update

Not great news...

I saw my palliative care doctor yesterday. I expect an update from my oncologist today or tomorrow by phone.

I don't expect much from my oncologist as my brain activity will likely invalidate me from being eligible for clinical trial experiments.

So, on to palliative care... The pain I've been trying to deal with for the past two weeks in my lower back is apparently more than just musculature or spinal. I have 3 Dr. opinions that all are telling me that it is likely referential pain caused by the tumor pressure on the fluid sack lining around my liver and/or pressure on my ribs from the same tumors. So I'm likely to be in pain for the rest of my life. The next step is likely a tear in my liver fluid sack lining resulting in a leak into my stomach that will cause eventual bloating from fluid, not from fat. That may alter the location of the pain in my abdomen, but not eliminate it.

So I'm on new drugs. A slow acting (12 hr) version of hydromorphone called Hydromorph Contin (3mg). Starting out at once per night before bed for 3 days while my body gets used the drowsy side-effect, then twice a day after that.

So I'll still likely have to take the occasional ibuprofen for swelling and occasional hydromorphone. I have to start logging my usage of them so that the long acting hydromporph contin amount can be adjusted as part of a longer term pain management system.

I'm expecting a 3-position "left chair" some time today. Kind of like a lazy-boy chair recliner that can push me out of it so I don't have to lift myself out of it.

-- Shane