Madhulika Sikka wrote a book on the ABCs of breast cancer. Stephanie has encouraged me to write my own ABCs of cancer. If nothing else, it gives me topics for quite a while if I am able to keep up the writing.
So, let's start off with 'A is for Anxiety'. Having or having had cancer puts one in a continual state of anxiety and your life is never the same again. You are continually ruled by the latest lab reports, scans, or blood tests. Your life comes to a complete halt in those days before the test and in the days afterwards as you wait for the results.
I have several friends who have been diagnosed with prostate cancer and their big test is the PSA test. Men begin getting this test later in life and it almost always comes back normal (less than 4) but for all too many people, it crosses that magic line and their life with cancer begins. The funny thing about these tests is that they are not precise. Someone can have a PSA of 3.5 and be in full blown metestatic disease while someone else has a PSA of 6 with only the early stages of cancer. You just never know.
Of course, that is where the major anxiety kicks in. You have the cancer removed by some means and then you watch the PSA level and it hopefully begins to drop. You get more and more confidence as that number continues to drop but your stress level goes through the roof when the time for your next blood test comes around.
My cancer has an extra annoyance that comes with it. One of the standard markers is the Chromogranin-a and there is not a consensus amongst labs about how to perform it. Some labs have a 'good' range of 0-35 with their marker while other labs have 0-5. Furthermore, this blood test is thrown off by commonly used protein pump inhibitors (Nexium, Protonix, Prevacid) that are prescribed for acid reflux and similar disorders.
Other markers are becoming available for me that are less variable and reduce the anxiety some but it is never gone. Even for those friends who have dealt with their cancers and reached the magic 5 year mark, you never know for sure. Another friend passed her 4 year mark in the clear but then the 5 year test showed that she is not through the storm. That is Anxiety with a capitol A.
I know everyone worries about mortal illnesses from time to time but when you have or have had cancer, this worry coms with extra intensity. You almost become a hypochondriac. Every twinge, headache, cramp, upset stomach, or cold makes you worry that the cancer is attacking with a vengeance. It takes days to get a couple of days off of the cancer rollercoaster just to get back in line for the next ride.
I have been on that ride for 12.5 years now and it seems to never stop. The good thing about it is that as long as I am on the ride, I am alive and able to enjoy the view some. There is a thrill to the minor successes when you get off the ride for a while and get to wander around the amusement park, taking in the sunshine and the smells. Something about surviving that last ride can make everything else just a little bit brighter.
Sunday, May 11, 2014
Wednesday, April 30, 2014
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!
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!
Wednesday, April 9, 2014
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.
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.
Thursday, April 3, 2014
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.
Saturday, January 11, 2014
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...
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...
Tuesday, January 7, 2014
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).
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).
Tuesday, October 15, 2013
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.
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.
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