Second chance for the kidneys

Three weeks ago, I got my stents swapped out and the tumors are really starting to impinge on the ureters.  The urologist was able to get some stronger stents inserted but the right ureter is getting harder and harder to manage.  He got the stent in but almost had to admit me try and insert it from above.  I have little idea of how this is performed and will talk to him about it at my next visit but things are getting worse in that area.

The kidneys have really responded well to the obstruction being removed with my numbers returning to a more normal (for me) level.  The big number that you watch for in kidney function is the creatinine level. 18 months ago, I had a truly normal creatinine of 1.1 which then rose to 2.4 12 months ago, 4.2 6 months ago and then was 8.2 prior to my stent swap.

My creatinine has now fallen back to a more tolerable level of 4.4 which puts me at about 18% of full kidney function. My nephrologist plans on holding off on dialysis until I hit about 10% of kidney function or I start to have significant indications of blood poisoning.  This could be as soon as 2 months or it could be as long as 6 months as long as I don't have another obstruction or even potentially longer.  We will continue to monitor my kidney function as well as the effects of kidney failure for the near future.

There are several effects that we will consider.  First, the kidneys manage the level of electrolytes in your blood, most notably, sodium, potassium, and phosphorus.  My last blood test shows that these are all in spec so I don't have to do anything special with respect to my diet.  Second, the kidneys filter out excess fluid in the blood and then you excrete it in your urine.  An indication that this is not functioning is that you begin to have swelling in your extremities and your blood pressure begins to rise.  So far, this is not happening for me.  Finally, your kidneys stop producing erythropoietin, causing you to become anemic (low red blood cell count).

Living at almost 7,000 feet in Colorado Springs, people tend to have excessively high red blood cell counts and mine should be in the range of 12-13.  Mine are 9.2 which is quite low, even for someone at sea level, and we have been trying to stimulate the growth with extra iron supplements but to no avail.  So I now have a second thing in common with Lance Armstrong as I am starting to receive synthetic EPO to attempt to boost my red blood counts.

So, getting back to the dialysis I expect to receive, I saw a vascular surgeon this morning to find out the plan for getting access to support dialysis.  A few weeks ago, I also had ultrasounds to map my veins and arteries so they would know where and how to create an AV-fistula in my arm to provide dialysis access.  As it happens, I have 'miniscule' veins according the the vascular surgeon and this means that they are unable to create a fistula.

The backup option is to insert a graft between the artery in your arm and the larger vein in your armpit.  This is not a preferred solution because grafts have a greater chance of infection and have other complications compared to a fistula but it is our best option.  They will insert a tube of PFTE (Teflon, so I will really be slick!!!) between the artery and vein in my upper left arm.  Recovery will be minimal and the surgeon says, if it hurts, don't do it.  I will still take a couple of weeks off of hockey but will be back on the ice in June.

So, May 9th, I will have my second surgical procedure in a month to put in the graft.  This usually takes less than 90 minutes and they will perform it with two blocks (arm and shoulder) along with some twilight sedation to avoid carcinoid crisis.  I will get some percocet for the pain but plan on being back in the office on Monday the 12th after making sure my kids give my wife a proper mother's day!

New ureteral stents may give kidneys some more time.

Right after my appointment with the nephrologist last Thursday, I was able to set up an appointment with the urologist on Friday and he scheduled me for a bilateral stent swap today.  Everything went well with no carcinoid crisis but the tumors are really starting to impinge on the ureters.  From the ultrasound that the nephrologist ordered, it looked like the right stent may not have been working very well.

That is exactly what the urologist noted during the swap.  He inserted thicker and stronger stents to try to avoid them getting crushed but was almost unable to get the right stent in place due to the compression from the tumors.  Had things not worked out, he may have needed to admit me and attempt to insert them from above.  If this failed, the next step is to put in a drain directly from the kidney to a tube in my back.  This is a step I don't want to take as it will certainly cause me to stop many activities such as hockey.

But, the stents are in place.  Hopefully they will relieve the stress on the kidneys and they will recover enough to put of dialysis for a while.  In another 6-9 months, we will need to attempt another replacement as the stents tend to encrust and start to obstruct.  Until then, hopefully my kidneys will recover some and we can make a plan on how to insert new stents with a minimum of intrusion.

More radiation and less kidney

In just 10 days, Stephanie and I are heading back to New Orleans for my second round of I131 treatment.  My scans seem to imply that treatment still is viable and Dr. Campeau has had several patients who have seen more response from further treatments so we are giving it another swing.  We fly out Tuesday the 15th, go straight to an appointment with a doctor and then I get admitted on the 16th for more radiation.  I know what I am getting into this time and have a cheap Chromebook that I will be using to watch movies, netflix, and just keep in touch.

The more worrisome side of the house are my kidneys.  As you may recall, my last two surgeries addressed tumors that were wrapped around my ureters.  This resulted in my kidneys getting backed up and putting strain on them.  I got stents inserted but they have a bad habit of clogging and causing further strain on the kidneys.  I am now in stage 5 chronic kidney disease and that means dialysis is coming and it is coming soon.

There are two types of dialysis but I am only eligible for hemodialysis where the blood is filtered through a machine and then put back.  To get to the point where I can do dialysis, I need to have a fistula installed in my arm, short circuiting a vein to an artery.  I will be having a consult to find out when I can get this done and it will still be several months after that before it will be healed enough to be used.  If my kidneys fail completely before that happens, they will need to put a catheter in my chest to be used for the dialysis in the short term.

These new developments really suck.  Hemodialysis is typically done three days a week at a dialysis facility and takes about 4hrs per treatment.  This starts to really interfere with life in a major fashion.  Two can be done on workdays but that really makes getting my 40 hours per week hard.  Of course, that is assuming I do dialysis one day on the weekend and that causes significant problems with camping, skiing, and any sort of activity.

Home dialysis is possible but Stephanie will need to be trained in placing the needles so that we can make this happen.  The machine is about 80 pounds and I would be connected to it every night for about 2-2.5hrs.  This makes everything a bit more tolerable but it still is a significant inconvenience to work and play.

I am not doing well.  I feel as if I am on the hairy edge of an emotional breakdown all the time.  The need for dialysis has hit me hard.  I know there are many people who deal with life on dialysis but this is just piling on.  There are people who deal with chronic cancer, people who deal with colostomies, people who deal with chronic diarrhea but I am tired of dealing with all of it.

I am not giving up and I am not stopping fighting but it is getting harder all the time.  Your support is needed and it is appreciated.

Slight increase in tumor markers

Just got the lab tests back this week and things are mostly stable.  Chromogranin-A is up about 10%, Neurokinin-A is up 10% and Pancreostatin is down about 2%.  What this means is that the Indium-131 treatment does not appear to be actively killing the cancer.  We will talk to the doctors in New Orleans to get a definitive statement but my guess is that we won't be trying another iteration of the I-131 treatment.

Broncos will beat the Chargers tomorrow and it is currently looking like the Patriots will be making a trip to Denver before their off season begins!  The Sea-chickens won today but the Saints really tried to make it interesting at the end...  In the early game tomorrow, Go Niners!

Two weeks till I get to ski Alta and 1.5 months to Crested Butte!  Snow has been great this year but River's swimming and the Boys' indoor soccer schedule are crimping our ski time...

And the beat goes on

It is 2014 and I am now over 12 years post diagnosis.  When I was first told I had cancer and had a chance to research my particular brand of cancer, I thought I had a 50% chance of getting to 10 years and, yet, I continue to roll.  I have certainly had road bumps along the way but I am hoping that I am going to be able to continue for another 12 years.

I got another speed bump in the first week of December when I had a bilateral stent replacement.  This was a procedure to replace the stents in my ureters that allow my kidneys to continue to filter my blood and generate urine.  In the first week of November, I got scheduled for the procedure and a minor infection was detected in my urine so I was given some antibiotics to clear that up.  Unfortunately, one of the antibiotics I was given was Bactrim.  Upon removal of my stents, one was completely blocked and the combination of that with the Bactrim punished my kidneys even more.

Back in late August, I had a creatinine level of 2.6 which indicates damaged kidneys ( ~1.0 is normal) but, just before the procedure, I was measured at 6.9 which indicates considerable kidney underperformance.  Four days after the procedure, it has declined to a 4.9 and, three weeks later, had dropped to 4.5.  What this means is that the kidneys are recovering some but it also implies that I am not returning to the prior level of kidney performance.

We spoke with a nephrologist (kidney doctor) today and she also felt that my kidneys would continue to recover and, fortunately, I am not in need of dialysis at this time.  I am not retaining fluid and my electrolyte levels are at an acceptable level so, as long as we maintain this situation, I should be able to continue without dialysis.  Of course, it also means that I need to be exceptionally cautious about anything that may damage my kidneys further as I don't have much margin for safety.

I am still awaiting the results of my blood tests to find out if the I-131 treatment beat back the tumors some but don't know if the recent kidney changes allow for further applications.  I will be sure to post those numbers when I get them (probably within the next week or so).

Ready, Set, GLOW!

Well, the time to head to New Orleans is almost upon us and this will involve my first round of MIBG treatment.  We go to the clinic on October 22nd for a 2pm appointment and then I check into the hospital at 1pm on Wednesday, October 23rd at 1pm for my injection.  The way I understand it, I will get an IV and the treatment will be infused into my body over the next hour or so.

Then begins my two days of isolation in the special hospital room.  I will not be allowed visitors for the next two days and will not be visited by the doctor until the 24th.  If all goes well, I will be discharged on the morning of the 25th and we will be on a flight home, early on the 26th.  I may feel some flu like symptoms over the next few days but symptoms should be fairly minor.  They have also never had anyone go into carcinoid crisis during treatment so that is something about we we do not need to be concerned!

Returning home, I need to avoid contact with pregnant women and very small children so if you or anyone you know meets those criteria, keep them away from me until after October 30th.  Various other restrictions apply such as not sleeping in the same bed as my wife and double flushing the toilet but, once we reach October 30th, all restrictions are off.  If you are interested there are details of the treatment and recovery period here.  Unfortunately, I will not glow in the visible spectrum...

Now, some of you have asked about the lesion that was seen on my right lung and appeared to be growing faster than one would expect for a carcinoid tumor.  We had planned on performing a biopsy (wasn't really looking forward to a big needle going into my chest) but several radiologists looked at the scans and were puzzled.  The shape, position, and other characteristics of the tumor made them think that this was not a tumor but, rather it is a round atelectasis.

I have never heard of this before but this is a collapsed, folded area of the lungs and occasionally occurs after being irritated from surgeries.  If this is the case, then we should see stable behavior on upcoming CT scans rather than the growth we would see if it were a tumor.  If it does grow, we will probably need to biopsy at that time but, for now, we will just wait and monitor.

Over the following couple of months, we hope to see a reduction in the levels of my tumor markers.  I don't expect that we will be able to see tumor regression but the reduction in carcinoid syndrome will definitely be appreciated!  If all goes well, we may return for a second round in 3-4 months or may look into PRRT in Europe if my kidneys can tolerate it.  Other options include a trial of pazopanib which is currently recruiting and has shown some anti-growth characteristics for carcinoid, similar to sunitinib.  It also, since pazopanib uses a similar pathway for slowing the growth as sunitinib, the success of both seems encouraging.

Time to get Radioactive

We tried the chemo route but that was a dead end with the cancer continuing to grow so it is time to seek out some new paths.  We also need to know about the mass on the lung to understand how to treat it.

About 4 weeks ago, I had another MIBG scan with the hopes that the lung mass would show up on it.  Unfortunately, no dice on the lung but I continue to be a candidate for MIBG treatment rather than just the scan.  MIBG uses either Iodine-123 for scanning (high gamma ray, low beta ray) or Iodine-131 for treatment (high beta, low gamma).  Gamma rays do not cause significant tissue damage but beta waves penetrate a couple of millimeters, killing the tissue they encounter.

MIBG attaches the radioactive iodine to a molecule similar to norpinephrine which is taken up by various tissues, in particular, carcinoid tumors in some cases.  Stephanie and I will go down to New Orleans on a Monday evening and have a clinic visit on Tuesday with me being admitted to the hospital at 10am on Wednesday.  At 1pm on Wednesday, I will be given a dose of the MIBG treatment and I will not be allowed any visitors for the next two days.

Thursday will have a visit from the doctor and, if things continue as normal, I will excrete a significant amount of the radiation through sweat and urine.  That means on Friday morning, I will be allowed to be released from the hospital.  Many return home on Saturday in case of nausea but we may wait until Sunday since we will be flying.  At this point, I will not be allowed to sleep in the same bed as someone else for the next couple of days and I should avoid contact with small children or pregnant women.

Over the next weeks and months, the iodine (half life of 8 days) will continue to burn the tumors and they will also monitor my blood counts as bone marrow also takes up norepeinephrine.  We will continue to monitor my tumor markers which should show some reduction in tumor load.  MIBG treatment does not normally reduce tumors in a fashion that can be monitored on CT or MRI scans but it does reduce the carcinoid symptom.

We don't have a date scheduled for the treatment but with the craziness of September and Steph's catering in October, we probably won't get to NOLA until the second week of October.  Fortunately, carcinoid grows slowly so delaying a while is not a big issue.

You may have heard me talk about PRRT in the past which is performed at many locations in Europe and is starting trials in the United States.  Unfortunately, PRRT is hard on the kidneys and I already have some kidney damage due to the tumors constricting the ureters and the associated hydronephrosis.  This makes me ineligible for the trials but we have not yet figured out if the trials are more restrictive so avoid complicating factors in the study.  If it is still available, we will probably be heading to europe in the future to try and get this treatment, probably paying for it with a loan from my 401k.

Now, about that lung.  I will be having a biopsy in the next few weeks to see if we can identify exactly what kind of cancer that mass represents.  I have been warned that the biopsy may fail to give a firm answer because the tumor looks like a cylinder and the doctor will be trying to hit the end of the cylinder.  If the biopsy fails to give a definitive answer, we will be forced to just monitor the mass and see if it behaves similar to the other tumors on my next CT scan.