Well, we did not want to jinx it by letting people know what our plans are so very few people knew that we got to check out of the hospital on 4/13 and we returned home this morning!!! It was wonderful seeing the mountains again as our plane flew into Colorado Springs but it is startling how brown things are here after the intense green of New Orleans.
So, here are the details. I did not get the GJ tube installed and have come home on just the TPN for now. We are letting the obstruction release a bit right now with nothing by mouth until Monday morning. At that point, I will begin supplementing the TPN with gatorade or other sports drinks to get more water along with significant additional calories.
Speaking of calories, I have some serious bulking up to do. I have always been relatively thin and, one year ago, I weighed in at about 205. When I started cycling seriously again last summer, that quickly dropped to about 195 and I have stayed there until early February. Well, I just stepped on the scale and I am down to 175. Obviously, if I were trying to diet, I would be ecstatic but losing 10% of your body weight unintentionally is not something that you want to do too often.
My surgery is still not scheduled but it is somewhat understandable. Stephanie went to the Dr's main office on Friday to fill out as much paperwork as possible and they showed her my chart. It currently consists of one folder with my name handwritten on it and one sheet of paper. All the material that they need is currently at the hospital and I anticipate that it should be transferred early next week. As part of my discharge paperwork, I was instructed to contact the office to schedule a surgery in the middle of May.
Speaking of surgery, I have one job over the next few weeks and that is to regain some strength. I was quite shocked this morning when we were walking through the New Orleans airport at how quickly I became tired and how exhausting short walks were. In order to speed my recovery after the surgery, I need to be as strong and healthy as possible when I roll into that operating room.
So, next week, we start with clear liquids for the first couple of days to see if I can tolerate that. If so, then I will step it up and start adding in some simple full liquids like Ensure. The TPN only gives me about 1700 calories (also, amino acids for protein, vitamins, and electrolites) and we would ideally like to consume in excess of 2400 calories per day.
If nothing else, just being home and out of a hospital is wonderful. I loved riding in a car, breathing outdoor air and sleeping in a non hospital bed. Here's to a couple of good weeks of weight gain!
Saturday, April 14, 2012
Thursday, April 12, 2012
Did I say the plans were firming up???
They are and they aren't. We do know I am going to have surgery down here and it is looking more and more likely that it will be Dr. Wang performing the surgery. The bad news is that it may not be until the middle of May and there are two reasons for this.
The first reason is that Dr. Wang's schedule simply does not support it right now as he has several conferences at which he is an invited presenter and needs to attend. The second reason is that the FDA is doing a bit of re-evaluation of the the nano knife technology. Nano knife has been used in well over a thousand cases since 2009 but it was somewhat rushed through the FDA approval process because of its similar characteristics to other tissue ablation processes. Dr. Wang believes that this will be completed by the end of April.
From what I have been able to read, it looks like they got approval to use the nano knife device for general surgical ablation of tissue. Their advertisements then seem to sell the technology for treating specific situations which is an error on their part since these capabilities have not been demonstrated in FDA approved tests. Basically, they are claiming something that the FDA does not believe has been proven. There may be a more recent FDA issue with the nano knife but I have not been able to find it.
That said, Dr. Wang seems to be very happy with the performance he is getting out of the nano knife. From what I can understand of the technology and physics, it makes sense that it would perform the way that they are describing.
There is a cool video on the use of nano knife and how it functions. Ablation techniques kill off cells with one of a number of forces, typically heat (Radio Frequency Ablation) or cold (Cryo ablation). The problem you run into with the other techniques is damage to adjoining tissue is ill-defined. This means that RFA cannot be used close to important tissues such as veins, arteries, or ureters and my situation involves at least two of those situations.
Without the nano knife, the surgeons would need to use old fashioned scalpels to remove the tumor and that also is fraught with potential error. Nano knife would give a higher likelihood of better margins without destroying the adjoining tissue. Obviously, this would reduce the likelihood of death, temporary colostomy, or permanent colostomy which is a good thing!
So. What do we do now. I have been on a full liquids diet but started cramping up yesterday so we limited my full liquids somewhat but without any success as I threw up lunch today. Food by mouth was intended as a supplement to the TPN that I have been receiving but TPN has issues. Basically, it is just sugar water with amino acids and electrolites and it is going in through a PICC line (essentially, a super duper IV). This means that TPN is relatively expensive, caries some risk (infection and PICC line maintenance), and can lead to pre-diabetic conditions.
What Dr. Wang is proposing as an alternative is a Gastric-Jejunostomy tube be installed. This will allow insertion of predigested food directly into my small intestine and will allow me to vent any gas that builds up in my stomach. This would be done in two steps. First, a Gastric tube would be installed and, a couple of days later, this would be upgraded to a GJ tube.
This would allow me to 'feed' myself at night and then close it off during the day time. Since the food is predigested, it should not back up in my small intestine and would give me the ability to live a bit more freely. There are fewer side affects to a GJ tube as well so that is a positive result.
So, now we need to decide. GJ tube or TPN. We are leaning towards the G tube installation on 4/13 with the GJ upgrade on 4/16 and then returning home to wait for the surgery with both the nano knife and the neoprobe. The combination of those technologies should lead to the best possible outcome for me. Dr. Wang performs his long surgeries on Wednesdays and Thursdays and my birthday is on a Thursday in May. Finally getting my surgery would be a very nice birthday present!
The first reason is that Dr. Wang's schedule simply does not support it right now as he has several conferences at which he is an invited presenter and needs to attend. The second reason is that the FDA is doing a bit of re-evaluation of the the nano knife technology. Nano knife has been used in well over a thousand cases since 2009 but it was somewhat rushed through the FDA approval process because of its similar characteristics to other tissue ablation processes. Dr. Wang believes that this will be completed by the end of April.
From what I have been able to read, it looks like they got approval to use the nano knife device for general surgical ablation of tissue. Their advertisements then seem to sell the technology for treating specific situations which is an error on their part since these capabilities have not been demonstrated in FDA approved tests. Basically, they are claiming something that the FDA does not believe has been proven. There may be a more recent FDA issue with the nano knife but I have not been able to find it.
That said, Dr. Wang seems to be very happy with the performance he is getting out of the nano knife. From what I can understand of the technology and physics, it makes sense that it would perform the way that they are describing.
There is a cool video on the use of nano knife and how it functions. Ablation techniques kill off cells with one of a number of forces, typically heat (Radio Frequency Ablation) or cold (Cryo ablation). The problem you run into with the other techniques is damage to adjoining tissue is ill-defined. This means that RFA cannot be used close to important tissues such as veins, arteries, or ureters and my situation involves at least two of those situations.
Without the nano knife, the surgeons would need to use old fashioned scalpels to remove the tumor and that also is fraught with potential error. Nano knife would give a higher likelihood of better margins without destroying the adjoining tissue. Obviously, this would reduce the likelihood of death, temporary colostomy, or permanent colostomy which is a good thing!
So. What do we do now. I have been on a full liquids diet but started cramping up yesterday so we limited my full liquids somewhat but without any success as I threw up lunch today. Food by mouth was intended as a supplement to the TPN that I have been receiving but TPN has issues. Basically, it is just sugar water with amino acids and electrolites and it is going in through a PICC line (essentially, a super duper IV). This means that TPN is relatively expensive, caries some risk (infection and PICC line maintenance), and can lead to pre-diabetic conditions.
What Dr. Wang is proposing as an alternative is a Gastric-Jejunostomy tube be installed. This will allow insertion of predigested food directly into my small intestine and will allow me to vent any gas that builds up in my stomach. This would be done in two steps. First, a Gastric tube would be installed and, a couple of days later, this would be upgraded to a GJ tube.
This would allow me to 'feed' myself at night and then close it off during the day time. Since the food is predigested, it should not back up in my small intestine and would give me the ability to live a bit more freely. There are fewer side affects to a GJ tube as well so that is a positive result.
So, now we need to decide. GJ tube or TPN. We are leaning towards the G tube installation on 4/13 with the GJ upgrade on 4/16 and then returning home to wait for the surgery with both the nano knife and the neoprobe. The combination of those technologies should lead to the best possible outcome for me. Dr. Wang performs his long surgeries on Wednesdays and Thursdays and my birthday is on a Thursday in May. Finally getting my surgery would be a very nice birthday present!
Tuesday, April 10, 2012
Plans becoming more firm again
We have been in Louisiana for about 24hrs now and things are becoming a bit more firm. We spoke with Dr. Boudreaux at the emergency room last night for a few minutes along with Dr. Rau who is a surgical resident, working with the carcinoid group. Dr. Boudreaux scheduled yet another CT scan (that is three in about three weeks) which I did last night.
Late this morning, we spoke with Dr. Boudreaux again but for about 30 minutes this time. He had Dr. Rau in tow along with a couple of (third year?) med students and we got a lot of more definitive information. Nothing completely solid but it is solidifying. At work, we often talk about a software freeze where no changes are allowed. This is sort of a software slushy.
The CT shows that I do have significant tumors in the messentary and in the pelvis. The tumors are starting to impinge on the main artery that leads to the messentary and the decreased blood flow certainly is not helping with the health of my intestines. Dr. Boudreaux and Dr. Rau seem to believe that my recent (prior to the more critical obstruction) bowel behavior is more likely obstructive in nature rather than decreased blood flow in nature.
What this all leads to is that he believes surgery is an option and is necessary at this point. The intent is that I will receive an octreoscan on Thursday the 12th. This is a standard scan for carcinoid patients and gives a picture of where the tumors are based on their affinity for octreotide. I have had a couple of these in the past and I did show up on the scans which is a good thing.
This scan will give a better picture of what is tumor and what is scar tissue. Furthermore, it can be used during surgery to actually guide the surgeon's scalpel to find the tumors amidst the good and scar tissue. This is done using what is called a neoprobe. Neoprobes are, essentially, mini geiger counters that can be used to identify tumor from other. They do need to wait a week after the original injection to perform the surgery (needed to let the body excrete the excess octreotide) which gives us a potential surgery date of 4/19.
This is going to be a VERY long surgery, perhaps as long as 15hrs to perform. In the end, I should be as tumor free as is possible from surgery, leaving behind only the liver tumors or tumors too small to be identified by the neoprobe.
Of course, there are downsides. The length of the surgery and the amount of bowel/rectum that may be resected leads to a higher chance of complications. These include
So, things are looking up at this point. Dr. Wang may do the surgery rather than Dr. Boudreaux but they are both patient, methodical surgeons which is exactly what is required. We may also get out of the hospital for a time between now and the surgery but that remains to be seen at this point. I will continue to update this blog but my wife is updating her caring bridge site as well with less of the cold analytical side I am accused of having.
Thoughts and emails are always appreciated as well as contributions to my iPad beowulf cluster!
Late this morning, we spoke with Dr. Boudreaux again but for about 30 minutes this time. He had Dr. Rau in tow along with a couple of (third year?) med students and we got a lot of more definitive information. Nothing completely solid but it is solidifying. At work, we often talk about a software freeze where no changes are allowed. This is sort of a software slushy.
The CT shows that I do have significant tumors in the messentary and in the pelvis. The tumors are starting to impinge on the main artery that leads to the messentary and the decreased blood flow certainly is not helping with the health of my intestines. Dr. Boudreaux and Dr. Rau seem to believe that my recent (prior to the more critical obstruction) bowel behavior is more likely obstructive in nature rather than decreased blood flow in nature.
What this all leads to is that he believes surgery is an option and is necessary at this point. The intent is that I will receive an octreoscan on Thursday the 12th. This is a standard scan for carcinoid patients and gives a picture of where the tumors are based on their affinity for octreotide. I have had a couple of these in the past and I did show up on the scans which is a good thing.
This scan will give a better picture of what is tumor and what is scar tissue. Furthermore, it can be used during surgery to actually guide the surgeon's scalpel to find the tumors amidst the good and scar tissue. This is done using what is called a neoprobe. Neoprobes are, essentially, mini geiger counters that can be used to identify tumor from other. They do need to wait a week after the original injection to perform the surgery (needed to let the body excrete the excess octreotide) which gives us a potential surgery date of 4/19.
This is going to be a VERY long surgery, perhaps as long as 15hrs to perform. In the end, I should be as tumor free as is possible from surgery, leaving behind only the liver tumors or tumors too small to be identified by the neoprobe.
Of course, there are downsides. The length of the surgery and the amount of bowel/rectum that may be resected leads to a higher chance of complications. These include
- Death. Of course, this is a possible complication of any surgery
- Abdominal infection. This would certainly prolong my hospital stay and could lead to further rounds of surgery
- Temporary colostomy. This would be required if the rectum required time to heal or if other work required that there be a bypass. Not something I would like and it would require another surgery to remove the temporary bypass.
- Permanent colostomy. Another bad outcome but people can still be active with colostomy bags although I don't want to think of taking an 80mph slapshot in a colostomy bag...
So, things are looking up at this point. Dr. Wang may do the surgery rather than Dr. Boudreaux but they are both patient, methodical surgeons which is exactly what is required. We may also get out of the hospital for a time between now and the surgery but that remains to be seen at this point. I will continue to update this blog but my wife is updating her caring bridge site as well with less of the cold analytical side I am accused of having.
Thoughts and emails are always appreciated as well as contributions to my iPad beowulf cluster!
Friday, April 6, 2012
Ch ch ch Changes
Maybe I should just stop posting. After finding out this morning that the Dr's office in New Orleans was closed for Good Friday, my local oncologist called the insider number and spoke with Dr. Boudreaux at the office. Dr Boudreaux recommended getting down to LA on Monday, 4/9 so off we go!
Found relatively decent airfare, given the two days notice and have RT flights for both Stephanie and I, departing Monday morning and returning on the 28th (hoped return date). Flights are just $500/pp which struck me as quite cheap, all things considered... Have a hotel room at the Hilton Garden Inn which has a special rate with the hospital and have reserved a rental car.
One significant downturn lately is that the obstruction does not seem to have completely opened back up. This means that I am, once again, not going to be eating and will be getting all of my nutrition by IV. I did talk to the nurse and I may be able to go home tomorrow with the IV food in tow and spend at least some time at home before we take off on our trip. As long as I can avoid the NG tube, I will be much happier!
So, Monday at about 5:00, I will pop into the ER and will be admitted in short order and will be able to start making some progress towards hacking back some of this cancer. What is my ideal schedule now? Whatever gets me home the soonest.
Found relatively decent airfare, given the two days notice and have RT flights for both Stephanie and I, departing Monday morning and returning on the 28th (hoped return date). Flights are just $500/pp which struck me as quite cheap, all things considered... Have a hotel room at the Hilton Garden Inn which has a special rate with the hospital and have reserved a rental car.
One significant downturn lately is that the obstruction does not seem to have completely opened back up. This means that I am, once again, not going to be eating and will be getting all of my nutrition by IV. I did talk to the nurse and I may be able to go home tomorrow with the IV food in tow and spend at least some time at home before we take off on our trip. As long as I can avoid the NG tube, I will be much happier!
So, Monday at about 5:00, I will pop into the ER and will be admitted in short order and will be able to start making some progress towards hacking back some of this cancer. What is my ideal schedule now? Whatever gets me home the soonest.
Plans change
Every time I think I know what the path forward is, it always seems to change.
The last 1.5 months or so, I have been having continued vomiting, alternating with a loss of appetite which was followed by diarrhea. The symptoms seemed to reflect my original diagnosis 10 years ago of a bowel obstruction but, when I had written my last blog entry, the symptoms had disappeared for about 1.5 weeks. Well, that all changed again on Monday, 4/2.
Once again, I got severe stomach cramps and knew I had the same symptoms again so my wife took me to the ER to see if we could uncover the cause. After a short (1hr) wait in the waiting room, we got back to talk to the doctor. He also suspected a small bowel obstruction and gave me 800cc's of a contrast to drink an hour before another CT scan.
Normal CT scans also include IV contrast but my right kidney's function is somewhat diminished so we avoided the IV contrast and went with a standard oral contrast. In spite of the lack of IV contrast, a very bloated small intestine seen right before the point where I had a mass of mescenteric tumors. This was the classic indication of a partial small bowel blockage.
What I had 10 years ago was a complete blockage while this is a partial blockage. Think of your garden hose that has been bent around a corner with a small kink in the line. As long as the pressure is low, the water still flows. As you increase the pressure, the kink becomes more pronounced until it finally shuts down any passage of water and this is what was happening to me.
So, the nurse inserts a Nasogastric (NG) tube up my nose and down into my stomach to begin sucking out as much as is possible on the front side of the blockage. Immediately, almost 600cc of the contrast that I had swallowed came up and I the pressure began to be reduced on the obstruction. I was then transferred to Penrose St. Francis where most of my doctors work.
NG tubes are no fun. They hurt going in and, once they are in, they continue to hurt both your nose and the back of your throat. It made it difficult to talk, sneeze, cough, or even dry swallow. They give you a cloraceptic type spray to try to numb some of the throat but it does not do much at all.
Finally, on 4/4, I began to pass some gas which is an indication that the bowels are beginning to free up and I got the hateful NG tube removed. On 4/5, I got my first clear liquids for lunch, followed by full liquids for dinner. Hopefully I get released on 4/6 to go home.
Our plans are quite involved at this point but still up in the air. On 4/9 (the office is closed on Good Friday), I will be contacting the leading carcinoid surgical group in the country who operate just outside of New Orleans. In a perfect world, I would check into their offices on 4/16 and then will have surgery sometime that week. These docs are the absolute best when it comes to carcinoid as it is almost all they do.
They have all the latest goodies such as radio guided surgery (using radiation to identify the tumors while I am open), have all the latest diagnostic tools, and know exactly how carcinoid behaves. Other than the week after my first diagnosis, this will be the first time that my knowledge of this cancer will be exceeded by the surgeons that will be operating on me.
I imagine I will end up spending about 2-3 weeks in New Orleans and my wife is already looking forward to the beignets that she will be consuming. I have never had one but my love of donuts will certainly transfer!
Once we return home, there will be the surgery+6weeks of recovery until I return to work. Hopefully I will have significant reduction in my total tumor volume and we can then return to waiting for the PRRT treatment which is just undergoing approval in the United States.
Any suggestions of things to do in New Orleans are appreciated although I don't think we want to go to the Sean Payton hall of shame...
The last 1.5 months or so, I have been having continued vomiting, alternating with a loss of appetite which was followed by diarrhea. The symptoms seemed to reflect my original diagnosis 10 years ago of a bowel obstruction but, when I had written my last blog entry, the symptoms had disappeared for about 1.5 weeks. Well, that all changed again on Monday, 4/2.
Once again, I got severe stomach cramps and knew I had the same symptoms again so my wife took me to the ER to see if we could uncover the cause. After a short (1hr) wait in the waiting room, we got back to talk to the doctor. He also suspected a small bowel obstruction and gave me 800cc's of a contrast to drink an hour before another CT scan.
Normal CT scans also include IV contrast but my right kidney's function is somewhat diminished so we avoided the IV contrast and went with a standard oral contrast. In spite of the lack of IV contrast, a very bloated small intestine seen right before the point where I had a mass of mescenteric tumors. This was the classic indication of a partial small bowel blockage.
What I had 10 years ago was a complete blockage while this is a partial blockage. Think of your garden hose that has been bent around a corner with a small kink in the line. As long as the pressure is low, the water still flows. As you increase the pressure, the kink becomes more pronounced until it finally shuts down any passage of water and this is what was happening to me.
So, the nurse inserts a Nasogastric (NG) tube up my nose and down into my stomach to begin sucking out as much as is possible on the front side of the blockage. Immediately, almost 600cc of the contrast that I had swallowed came up and I the pressure began to be reduced on the obstruction. I was then transferred to Penrose St. Francis where most of my doctors work.
NG tubes are no fun. They hurt going in and, once they are in, they continue to hurt both your nose and the back of your throat. It made it difficult to talk, sneeze, cough, or even dry swallow. They give you a cloraceptic type spray to try to numb some of the throat but it does not do much at all.
Finally, on 4/4, I began to pass some gas which is an indication that the bowels are beginning to free up and I got the hateful NG tube removed. On 4/5, I got my first clear liquids for lunch, followed by full liquids for dinner. Hopefully I get released on 4/6 to go home.
Our plans are quite involved at this point but still up in the air. On 4/9 (the office is closed on Good Friday), I will be contacting the leading carcinoid surgical group in the country who operate just outside of New Orleans. In a perfect world, I would check into their offices on 4/16 and then will have surgery sometime that week. These docs are the absolute best when it comes to carcinoid as it is almost all they do.
They have all the latest goodies such as radio guided surgery (using radiation to identify the tumors while I am open), have all the latest diagnostic tools, and know exactly how carcinoid behaves. Other than the week after my first diagnosis, this will be the first time that my knowledge of this cancer will be exceeded by the surgeons that will be operating on me.
I imagine I will end up spending about 2-3 weeks in New Orleans and my wife is already looking forward to the beignets that she will be consuming. I have never had one but my love of donuts will certainly transfer!
Once we return home, there will be the surgery+6weeks of recovery until I return to work. Hopefully I will have significant reduction in my total tumor volume and we can then return to waiting for the PRRT treatment which is just undergoing approval in the United States.
Any suggestions of things to do in New Orleans are appreciated although I don't think we want to go to the Sean Payton hall of shame...
Monday, March 26, 2012
The obvious answer doesn't always work
Man, has it really been that long since I updated this? Sounds like it is time to give everyone a quick status update.
I have consulted with a local Gastroenterologist to see if we could find out what was causing the diarrhea that I have been experiencing. Carcinoid cancer often causes us noids to have diarrhea due to the influence of the metastases that are in the liver and I have long thought that this is why I spend so much time in the bathroom. Well, increased dosages of sandostatin have not controlled the symptoms so we have started looking for alternate explanations.
My GI doc proposed that I may have small bowel overgrowth of bacteria. Your intestines have immense numbers of bacteria to aid in digestion (bacteria actually outnumber the number of 'human' cells in your body) but most of these bacteria are located in your large intestine. For some folks who have had small bowel surgery, the number of bacteria in your small bowel gets seriously out of whack and lead to dumping into your large intestine and, thus, diarrhea.
So, we started on some antibiotics to kill off all the bacteria in the bowel and then went to regrow the large intestine flora with some probiotics. Just as I finished the antibiotics about 5 weeks ago, I started to get very sick. I had trouble keeping food down and had what appeared to be the symptoms of a small bowel obstruction.
After a couple of weeks of this, missing some work, some skiing including the 2011-2012 ski patrol skills test, I am finally back to 'normal' (minus 10 pounds or so). This means I am back to 'normal' diarrhea but at least I am able to eat normally and have stabilized my weight loss.
Moving forward from this, we still need to find out what is going on since the simple answer was not the solution to the bowel problem. I will be doing a 48hour stool collection (yes, it is as fun as it sounds) and the GI doc will be analyzing the output for volume, fat levels, electrolyte levels and other details to see if we can find the reason for the diarrhea.
I had my twice yearly CT scan about on 3/23 and got mostly the same results on it that I have gotten for some time. Masses in the liver, messentary, and pelvis are continuing to demonstrate their slow growth and the small (3mm) lesion in the lung has been stable for some time. The one new development is that there appears to be a mass around the right ureter that is starting to impinge on flow from the right kidney to the bladder. I have not talked to the Dr. about this but my limited research on the web says that this can be addressed non surgically to some extent by insertion of a stent. If nothing else, it is not an urgent condition at this point.
Other than that, life is good. 10 pounds less will make the Deer Creek Challenge a bit more doable. Ski season has sucked this year with Copper Mountain snowfall about 80 inches behind normal and 40 inches behind the worst I have on record for the last 7 years. After the awesomeness that was last years snowfall, I shouldn't complain but I will anyway.
The Run For Hope is currently scheduled for August 4 and we will be there in force once again with as many people in Team Ron as possible. My wife is also planning a benefit dinner mid summer this year with the proceeds going to fund carcinoid research. I would love to see many of you at one or the other event!
I have consulted with a local Gastroenterologist to see if we could find out what was causing the diarrhea that I have been experiencing. Carcinoid cancer often causes us noids to have diarrhea due to the influence of the metastases that are in the liver and I have long thought that this is why I spend so much time in the bathroom. Well, increased dosages of sandostatin have not controlled the symptoms so we have started looking for alternate explanations.
My GI doc proposed that I may have small bowel overgrowth of bacteria. Your intestines have immense numbers of bacteria to aid in digestion (bacteria actually outnumber the number of 'human' cells in your body) but most of these bacteria are located in your large intestine. For some folks who have had small bowel surgery, the number of bacteria in your small bowel gets seriously out of whack and lead to dumping into your large intestine and, thus, diarrhea.
So, we started on some antibiotics to kill off all the bacteria in the bowel and then went to regrow the large intestine flora with some probiotics. Just as I finished the antibiotics about 5 weeks ago, I started to get very sick. I had trouble keeping food down and had what appeared to be the symptoms of a small bowel obstruction.
After a couple of weeks of this, missing some work, some skiing including the 2011-2012 ski patrol skills test, I am finally back to 'normal' (minus 10 pounds or so). This means I am back to 'normal' diarrhea but at least I am able to eat normally and have stabilized my weight loss.
Moving forward from this, we still need to find out what is going on since the simple answer was not the solution to the bowel problem. I will be doing a 48hour stool collection (yes, it is as fun as it sounds) and the GI doc will be analyzing the output for volume, fat levels, electrolyte levels and other details to see if we can find the reason for the diarrhea.
I had my twice yearly CT scan about on 3/23 and got mostly the same results on it that I have gotten for some time. Masses in the liver, messentary, and pelvis are continuing to demonstrate their slow growth and the small (3mm) lesion in the lung has been stable for some time. The one new development is that there appears to be a mass around the right ureter that is starting to impinge on flow from the right kidney to the bladder. I have not talked to the Dr. about this but my limited research on the web says that this can be addressed non surgically to some extent by insertion of a stent. If nothing else, it is not an urgent condition at this point.
Other than that, life is good. 10 pounds less will make the Deer Creek Challenge a bit more doable. Ski season has sucked this year with Copper Mountain snowfall about 80 inches behind normal and 40 inches behind the worst I have on record for the last 7 years. After the awesomeness that was last years snowfall, I shouldn't complain but I will anyway.
The Run For Hope is currently scheduled for August 4 and we will be there in force once again with as many people in Team Ron as possible. My wife is also planning a benefit dinner mid summer this year with the proceeds going to fund carcinoid research. I would love to see many of you at one or the other event!
Thursday, January 5, 2012
Current Roadmap
Happy 2012 everyone! Stephanie and I started off the year with a
flight to Des Moines Iowa and then a short 2hr drive to Iowa City to see
Dr. O'Dorisio at the University of Iowa. I have been seeing Dr. Odo
for about 6 years now as he is one of the leading experts in carcinoid
cancer and sees hundreds of carcinoid patients a year as compared to the
two that my doctor in Colorado Springs sees. Obviously, seeing more
patients gives a doctor a leg up on diagnosis and treatment as he has
significantly more experience.
We met this year to discuss what the path forward is going to look like. 4 months ago, Dr. Odo said that when we met, it would be with an intent to treat since one of my blood markers had increased 4 fold over the past 9 months. At the hospital, I had a repeat of the ultrasound scan I had a year ago and my tumor burden in the liver has increased from less than 10% to 10% which is a small increase.
I wanted to explore the options available and see what the best choice was at this point in time. Obviously, the tumors are not taking over any of the major organs of my body but that is not the only thing that needs to be addressed with the disease.
The worst part of my disease from a day to day point of view is the carcinoid syndrome which manifests itself in two ways for me. The first, less annoying manifestation is flushing where my head and upper body will turn red and I will feel heat in my face. This often appears after periods of exceptional exertion and is a bit annoying but not too inconvenient.
If you see me at work, I generally flush about 90 seconds after hiking the stairs from the basement to the 2nd floor (4 flights of stairs). At hockey, I generally flush towards the end of a rest on the bench after a shift on the ice when I am skating out rather than playing goal. When playing goal, I frequently flush just a little while after defensive breakdown in our own zone.
The second manifestation is diarrhea. This is inconvenient and is certainly more annoying. I generally have to plan where I am and where the bathrooms are going to be just in case the syndrome creates a critical situation. We have tried increasing the dosage of sandostatin that I receive to see if that can help reduce the diarrhea but it has not been successful. Dr. Odo has given me a prescription for another medication (Cyproheptadine Hydrochloride Syrup) that we will try and I will also make an appointment with a gastrointestinal doctor too see if there may be a non carcinoid reason for the diarrhea.
If neither of these attempts are successful we may attempt a treatment of SirSpheres to the lobe of the liver with the greatest tumor burden. The hope is that killing some of the tumors will reduce the amount of syndrome that I experience.
What comes after that? Well, there is a treatment that has been successfully applied in Europe for the past 15 years called Peptide Receptor RadioNucleotide Treatment (PPRNT). This treatment (also sometimes shortened to PPRT) is not yet FDA approved in the United States although there is a doctor providing this treatment in Texas for the low, low price of $60,000. Alternatively, the same treatment can be had in Basel Switzerland (and Rotterdam and Bad Berka and...) for about $20,000 including travel and lodging!
What is even better is that Dr. Odo is trying to get this treatment approved in the United States and he has one of the six facilities that should have it. Dr. Odo's hope is that the treatment will be available in the next year although he has been saying this for about three years. PPRNT is another treatment where radiation is tagged to a key that fits a lock in the tumor. This makes me glow for a period of time but the end result is that the treatment can give another 3 years of progression free life.
Of course, there are problems with the treatment in that there is collateral damage from the radiation and the primary casualties are the liver and the kidneys. The treatment can then be repeated as long as there is sufficient kidney and liver function to survive the treatment. The liver will regenerate but the kidneys are another matter. Unfortunately, there is no way to prevent injuring the kidneys so we need to be careful not to use too much of this treatment.
Overall, things look relatively positive for me continuing to annoy all of you for years to come!
We met this year to discuss what the path forward is going to look like. 4 months ago, Dr. Odo said that when we met, it would be with an intent to treat since one of my blood markers had increased 4 fold over the past 9 months. At the hospital, I had a repeat of the ultrasound scan I had a year ago and my tumor burden in the liver has increased from less than 10% to 10% which is a small increase.
I wanted to explore the options available and see what the best choice was at this point in time. Obviously, the tumors are not taking over any of the major organs of my body but that is not the only thing that needs to be addressed with the disease.
The worst part of my disease from a day to day point of view is the carcinoid syndrome which manifests itself in two ways for me. The first, less annoying manifestation is flushing where my head and upper body will turn red and I will feel heat in my face. This often appears after periods of exceptional exertion and is a bit annoying but not too inconvenient.
If you see me at work, I generally flush about 90 seconds after hiking the stairs from the basement to the 2nd floor (4 flights of stairs). At hockey, I generally flush towards the end of a rest on the bench after a shift on the ice when I am skating out rather than playing goal. When playing goal, I frequently flush just a little while after defensive breakdown in our own zone.
The second manifestation is diarrhea. This is inconvenient and is certainly more annoying. I generally have to plan where I am and where the bathrooms are going to be just in case the syndrome creates a critical situation. We have tried increasing the dosage of sandostatin that I receive to see if that can help reduce the diarrhea but it has not been successful. Dr. Odo has given me a prescription for another medication (Cyproheptadine Hydrochloride Syrup) that we will try and I will also make an appointment with a gastrointestinal doctor too see if there may be a non carcinoid reason for the diarrhea.
If neither of these attempts are successful we may attempt a treatment of SirSpheres to the lobe of the liver with the greatest tumor burden. The hope is that killing some of the tumors will reduce the amount of syndrome that I experience.
What comes after that? Well, there is a treatment that has been successfully applied in Europe for the past 15 years called Peptide Receptor RadioNucleotide Treatment (PPRNT). This treatment (also sometimes shortened to PPRT) is not yet FDA approved in the United States although there is a doctor providing this treatment in Texas for the low, low price of $60,000. Alternatively, the same treatment can be had in Basel Switzerland (and Rotterdam and Bad Berka and...) for about $20,000 including travel and lodging!
What is even better is that Dr. Odo is trying to get this treatment approved in the United States and he has one of the six facilities that should have it. Dr. Odo's hope is that the treatment will be available in the next year although he has been saying this for about three years. PPRNT is another treatment where radiation is tagged to a key that fits a lock in the tumor. This makes me glow for a period of time but the end result is that the treatment can give another 3 years of progression free life.
Of course, there are problems with the treatment in that there is collateral damage from the radiation and the primary casualties are the liver and the kidneys. The treatment can then be repeated as long as there is sufficient kidney and liver function to survive the treatment. The liver will regenerate but the kidneys are another matter. Unfortunately, there is no way to prevent injuring the kidneys so we need to be careful not to use too much of this treatment.
Overall, things look relatively positive for me continuing to annoy all of you for years to come!
Subscribe to:
Posts (Atom)