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.
Tuesday, October 15, 2013
Friday, August 30, 2013
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.
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.
Sunday, July 14, 2013
Shut up Legs
Well, I finished the ride. It was a brute and there were sections that just put me in the depths of pain and cold that I have not felt in some time. The distance (120 miles), the altitude (11000+ feet of vertical) and the time from beginning to end (14hrs) are all personal records for me. I have never done these sorts of numbers and I don't plan on doing them again!
So, how about some details. I started at at 6:05 which was just 5 minutes later than I wanted. I was fully outfitted with a camelback full of ice and water, a number of honey stinger strawberry waffles and two packages of Cliff Shot Blocks. Honey stinger waffles are the best energy snack I have tasted and I recommend them to everyone.
The first climb was up Juniper pass and included a 1 mile detour because of road construction. I slowly ground my way up the climb, envious of everyone with either compact or triple chainrings or riders with 32 tooth rear sprockets. I was riding a standard 39 tooth small chainring and a 28 tooth rear sprocket and it made grinding along at 5mph quite rough. I was wanting to push over all the riders flying past at twice my speed and carrying on conversations with their partners. I finished the climb in 2:31 which is just one minute behind my planned schedule and had me feeling quite good.
The next section was the ride down to Idaho Springs (I may not climb well but I can really decend!) and then up into Georgetown. This segment went quite well and I made it to the rest stop at 4:10 which was just 10 minutes behind schedule. I ate some snacks, refilled water, and got back on the bike for the next climb after a 15 minute break.
The third section is a nasty climb up to the Loveland Basin ski resort. This sits at 11000 feet, 5000 feet higher than the famed Mont Ventoux in the Tour de France that is being ridden today (7/14/13) and is widely seen as one of the most vicious climbs around. This was my absolute worst segment. I had a goal of riding this segment in 2 hours but came in at almost 3 hours. I took a 30 minute break at Loveland, trying to convince myself to go on and getting encouragement from my support team of Stephanie and Forrest.
The forth section starts with 1000 feet of climbing over 4 miles to top out at just a shade under 12000 feet above sea level. My lungs really felt this climb and I had a goal of stopping at most every half mile. I made the first mile with this goal but, after that, my legs fell apart. I often would get less than a tenth of a mile before having to stop and recover. Whenever my heart rate would break into the low 160s, I would stop and wait for it to recover into the low 130s before going again. I finally crested the summit and then took a moment to zip up my wind jacket and start the long descent into Keystone.
The descent was fun (Strava put me in the top 40% of all descenders on this section!), even though there was a headwind all the way down. We then turn onto Swan Mountain Road which goes around the north side of Keystone and has a small climb over Swan Mountain. Here I met the first of the monsoon weather. Stephanie stopped and helped me put my Gortex pants on which do an awesome job of keeping me dry and I rode right into the rain over Swan Mountain. The rain stopped by the time I hit the rest stop at Summit Highschool and I thought I was done with weather at this point. I left Summit Highschool at 10 hours since I started which is about 2 hours behind my planned schedule.
The ride into Copper Mountain was actually quite nice and I had the first of a tailwind that would follow me all the way into Avon. At Copper Mountain, Steph offered me my rainpants and I refused which was one of the worst mistakes I made on the ride. Just as I left the resort, the rain started. This was not a normal Colorado rain but an honest to goodness West Michigan downpour. Visibility was often down to less than half a mile and the rain was COLD! I took shelter in trees a few times during the hardest parts of the downpour and avoided the hail I saw on the trail but this made it brutal. I finally made it to the summit of Vail Pass at 6pm, 12 hours into the ride and was relieved to see my support crew with the engine idling and the heater on full.
I spent a while in the car, trying to warm up and dry off some before doing the final descent. I put on my rain pants, dropped my windjacket, soaked arm warmers, and wet jersey, putting on a dry jersey, a hoodie and a Columbia rain jacket with a rubberized interior. This combination was sufficient to keep me warm on the final segment of 28 downhill miles. I took my time on the descent since a quarter inch of water on the roads, slick new paint stripes, and narrow tires do not lead to decent traction.
Regardless, the combination of newfound warmth and a tailwind allowed me to race through Vail at 20+ miles per hour. Finally, I saw the signs for Beaver Creek resort and knew that my goal was in sight. I hit the final roundabout,. made a quick left and a right and saw the finish line. What few fans were left were cheering but Stephanie and Forrest cheered the loudest. I came across the finish line and got my first ever bling at a bike ride, a finisher medal for the Triple Bypass.
So, 14 hours after I started, 11 hours of moving time, 14 hours of total time, 119 miles, and 11,142 feet of vertical, I was done. My shoulders ache, my legs and knees are sore and tired and my pinkies are still tingling from so long holding on to the handlebars. I know people were coming in after me so I am not DFL (Strava has me 120th out of the 120 who logged their ride on Strava) and I know I finished. I don't plan on EVER doing something of this category again. I suffered. I almost quit many times. I could not have made it without my 'crew'.
13.5 months ago, I had 3 days of marathon surgery for 22hours. 7.5 months ago, several of the doctors wanted to just send me home to be handled by hospice until I died. Fortunately, Dr. Boudreaux disagreed and spent 12 hours of surgery, getting me back to a state where I could recover and thrive. I don't plan on doing a ride like this ever again. I will do long rides, centuries an metric centuries. I may even redo segments of this ride but I have no desire to ever do this brutal of a course again.
So, how about some details. I started at at 6:05 which was just 5 minutes later than I wanted. I was fully outfitted with a camelback full of ice and water, a number of honey stinger strawberry waffles and two packages of Cliff Shot Blocks. Honey stinger waffles are the best energy snack I have tasted and I recommend them to everyone.
The first climb was up Juniper pass and included a 1 mile detour because of road construction. I slowly ground my way up the climb, envious of everyone with either compact or triple chainrings or riders with 32 tooth rear sprockets. I was riding a standard 39 tooth small chainring and a 28 tooth rear sprocket and it made grinding along at 5mph quite rough. I was wanting to push over all the riders flying past at twice my speed and carrying on conversations with their partners. I finished the climb in 2:31 which is just one minute behind my planned schedule and had me feeling quite good.
The next section was the ride down to Idaho Springs (I may not climb well but I can really decend!) and then up into Georgetown. This segment went quite well and I made it to the rest stop at 4:10 which was just 10 minutes behind schedule. I ate some snacks, refilled water, and got back on the bike for the next climb after a 15 minute break.
The third section is a nasty climb up to the Loveland Basin ski resort. This sits at 11000 feet, 5000 feet higher than the famed Mont Ventoux in the Tour de France that is being ridden today (7/14/13) and is widely seen as one of the most vicious climbs around. This was my absolute worst segment. I had a goal of riding this segment in 2 hours but came in at almost 3 hours. I took a 30 minute break at Loveland, trying to convince myself to go on and getting encouragement from my support team of Stephanie and Forrest.
The forth section starts with 1000 feet of climbing over 4 miles to top out at just a shade under 12000 feet above sea level. My lungs really felt this climb and I had a goal of stopping at most every half mile. I made the first mile with this goal but, after that, my legs fell apart. I often would get less than a tenth of a mile before having to stop and recover. Whenever my heart rate would break into the low 160s, I would stop and wait for it to recover into the low 130s before going again. I finally crested the summit and then took a moment to zip up my wind jacket and start the long descent into Keystone.
The descent was fun (Strava put me in the top 40% of all descenders on this section!), even though there was a headwind all the way down. We then turn onto Swan Mountain Road which goes around the north side of Keystone and has a small climb over Swan Mountain. Here I met the first of the monsoon weather. Stephanie stopped and helped me put my Gortex pants on which do an awesome job of keeping me dry and I rode right into the rain over Swan Mountain. The rain stopped by the time I hit the rest stop at Summit Highschool and I thought I was done with weather at this point. I left Summit Highschool at 10 hours since I started which is about 2 hours behind my planned schedule.
The ride into Copper Mountain was actually quite nice and I had the first of a tailwind that would follow me all the way into Avon. At Copper Mountain, Steph offered me my rainpants and I refused which was one of the worst mistakes I made on the ride. Just as I left the resort, the rain started. This was not a normal Colorado rain but an honest to goodness West Michigan downpour. Visibility was often down to less than half a mile and the rain was COLD! I took shelter in trees a few times during the hardest parts of the downpour and avoided the hail I saw on the trail but this made it brutal. I finally made it to the summit of Vail Pass at 6pm, 12 hours into the ride and was relieved to see my support crew with the engine idling and the heater on full.
I spent a while in the car, trying to warm up and dry off some before doing the final descent. I put on my rain pants, dropped my windjacket, soaked arm warmers, and wet jersey, putting on a dry jersey, a hoodie and a Columbia rain jacket with a rubberized interior. This combination was sufficient to keep me warm on the final segment of 28 downhill miles. I took my time on the descent since a quarter inch of water on the roads, slick new paint stripes, and narrow tires do not lead to decent traction.
Regardless, the combination of newfound warmth and a tailwind allowed me to race through Vail at 20+ miles per hour. Finally, I saw the signs for Beaver Creek resort and knew that my goal was in sight. I hit the final roundabout,. made a quick left and a right and saw the finish line. What few fans were left were cheering but Stephanie and Forrest cheered the loudest. I came across the finish line and got my first ever bling at a bike ride, a finisher medal for the Triple Bypass.
So, 14 hours after I started, 11 hours of moving time, 14 hours of total time, 119 miles, and 11,142 feet of vertical, I was done. My shoulders ache, my legs and knees are sore and tired and my pinkies are still tingling from so long holding on to the handlebars. I know people were coming in after me so I am not DFL (Strava has me 120th out of the 120 who logged their ride on Strava) and I know I finished. I don't plan on EVER doing something of this category again. I suffered. I almost quit many times. I could not have made it without my 'crew'.
13.5 months ago, I had 3 days of marathon surgery for 22hours. 7.5 months ago, several of the doctors wanted to just send me home to be handled by hospice until I died. Fortunately, Dr. Boudreaux disagreed and spent 12 hours of surgery, getting me back to a state where I could recover and thrive. I don't plan on doing a ride like this ever again. I will do long rides, centuries an metric centuries. I may even redo segments of this ride but I have no desire to ever do this brutal of a course again.
Tuesday, July 9, 2013
Hows about those lungs?
We went to New Orleans for an evaluation of how well the oral chemo drugs have been working. I have been taking 1500mg of Xeloda morning and night for 14 of 28 days and 300mg of Temodar for 5 of 28 days. The Xeloda has been causing me some additional diarrhea along with some hand and foot syndrome (dryness and cracking of the skin) but have been tolerating it relatively well.
We brought down disks from a CT on 7/2 and an MRI on 7/3. Both were done without contrast as my kidney function is not sufficient to tolerate the contrast in my body. This means that the scans are not as precise as desired and it is a bit more fuzzy compared to scans with contrast.
The radiologist for the MRI was a bit of a dumbass and compared back to a CT in 10/12 rather than the MRI from 2/13 that they had in their system. 10/12 was prior to my surgery in 11/12 so the comparison is mostly useless. Dr Campeau in New Orleans will do a comparison in the next few days to get a real understanding of the difference. However, the CT was done with a reasonable comparison to 2/13 and the abdominal and pelvis tumors seem to be mostly unchanged or a slight amount of growth.
This time, the CT included the chest and we got a good image of the lungs and that is where the issues showed up in this scan. A 43x14mm mass was detected in the lung and, of course, we don't know what it is and, right now, we don't know how long it has been there. Dr. Campeau will be looking for this mass in previous scans to try and determine if we have seen it before and how it has progressed. Dr. Ramirez is concerned that it could be early stage lung cancer or it could be typical carcinoid or, if it has grown quickly, it is a-typical carcinoid (more aggressive).
The plan for now is that we will have a PET scan in the near future. Typical carcinoid does not respond to PET so if this mass does respond, then it is either a-typical carcinoid or it is a lung carcinoid. It is also likely that we will perform a biopsy of this mass to accurately classify its type.
Once again, this means that our future is uncertain. We will be continuing the chemo, at least the Xeloda. Just before we left, we got a letter from the insurance company saying that that I was receiving the Temodar due to, essentially, a clerical error. They need to get some more documentation from my doctors to ensure I am truly in need of the drug so we have about 1.5 weeks to get that taken care of or I will miss this round of Temodar.
In other news, I will be attacking the Triple Bypass on July 13th. This is a ride of 120 miles over 3 mountain passes with a total of 10000 feet of vertical. I am planning on starting at 6am and hope to reach the top of the first pass (Juniper) by 9am. This is 3500 feet of vertical over 17 miles. A couple of weeks ago I rode Monarch pass which is 3000 feet of vertical in 10 miles and I did it in under 3 hours. This makes me think that Juniper in 3 hours is roughly right.
There are then three rest stops, echo lake at the top of Juniper, Georgetown at 42 miles and Loveland basin at 56 miles. My goal is to then make it to Loveland basin by 11am. This is about 15 miles of screaming descent and then 26 miles of climbing with 3000 feet of vertical gain. This may be a bit optimistic but they have one lane of Loveland pass closed from 10am through 2pm so I want to be on my way up the pass in that window.
Given I make the previous, I have another 1500 feet of vertical over 4 miles to crest Loveland pass and then I fly down the other side into Dillon, CO. This includes a short climb of 500 vertical feet before I hit the next rest stop at Summit Highschool with a goal time of 2:30. This is 77 miles into the race and, if I make this point, I believe I can finish.
I then have 1000 feet of climbing past Copper Mountain to get to the fifth rest stop at the top of Vail Pass and mile 92 with a goal of 4:30. Reaching that point is key because I now have 3000 feet of decending over 38 miles that takes me into Avon. There are going to be ever so slight climbs at places and my legs will be screaming at me until I make that final stop in Avon and a finish time of around 6pm. They close the ride at 8pm so that gives me a little bit of slack in my schedule.
Will I make it? I hope. If I make it by 6pm, I won't be last but I will have finished. Even if I don't finish, I will have started. As my best friend told me, Dead F'ing Last > Did Not Finish > Did Not Start. I know he stole it from a running blog but it applies to anything. Just attempting something is an accomplishment. Finishing is fantastic but not necessary and, even if you finish, DFL is still something to be proud of and is even a point of pride in some of the highest levels of competition.
We brought down disks from a CT on 7/2 and an MRI on 7/3. Both were done without contrast as my kidney function is not sufficient to tolerate the contrast in my body. This means that the scans are not as precise as desired and it is a bit more fuzzy compared to scans with contrast.
The radiologist for the MRI was a bit of a dumbass and compared back to a CT in 10/12 rather than the MRI from 2/13 that they had in their system. 10/12 was prior to my surgery in 11/12 so the comparison is mostly useless. Dr Campeau in New Orleans will do a comparison in the next few days to get a real understanding of the difference. However, the CT was done with a reasonable comparison to 2/13 and the abdominal and pelvis tumors seem to be mostly unchanged or a slight amount of growth.
This time, the CT included the chest and we got a good image of the lungs and that is where the issues showed up in this scan. A 43x14mm mass was detected in the lung and, of course, we don't know what it is and, right now, we don't know how long it has been there. Dr. Campeau will be looking for this mass in previous scans to try and determine if we have seen it before and how it has progressed. Dr. Ramirez is concerned that it could be early stage lung cancer or it could be typical carcinoid or, if it has grown quickly, it is a-typical carcinoid (more aggressive).
The plan for now is that we will have a PET scan in the near future. Typical carcinoid does not respond to PET so if this mass does respond, then it is either a-typical carcinoid or it is a lung carcinoid. It is also likely that we will perform a biopsy of this mass to accurately classify its type.
Once again, this means that our future is uncertain. We will be continuing the chemo, at least the Xeloda. Just before we left, we got a letter from the insurance company saying that that I was receiving the Temodar due to, essentially, a clerical error. They need to get some more documentation from my doctors to ensure I am truly in need of the drug so we have about 1.5 weeks to get that taken care of or I will miss this round of Temodar.
In other news, I will be attacking the Triple Bypass on July 13th. This is a ride of 120 miles over 3 mountain passes with a total of 10000 feet of vertical. I am planning on starting at 6am and hope to reach the top of the first pass (Juniper) by 9am. This is 3500 feet of vertical over 17 miles. A couple of weeks ago I rode Monarch pass which is 3000 feet of vertical in 10 miles and I did it in under 3 hours. This makes me think that Juniper in 3 hours is roughly right.
There are then three rest stops, echo lake at the top of Juniper, Georgetown at 42 miles and Loveland basin at 56 miles. My goal is to then make it to Loveland basin by 11am. This is about 15 miles of screaming descent and then 26 miles of climbing with 3000 feet of vertical gain. This may be a bit optimistic but they have one lane of Loveland pass closed from 10am through 2pm so I want to be on my way up the pass in that window.
Given I make the previous, I have another 1500 feet of vertical over 4 miles to crest Loveland pass and then I fly down the other side into Dillon, CO. This includes a short climb of 500 vertical feet before I hit the next rest stop at Summit Highschool with a goal time of 2:30. This is 77 miles into the race and, if I make this point, I believe I can finish.
I then have 1000 feet of climbing past Copper Mountain to get to the fifth rest stop at the top of Vail Pass and mile 92 with a goal of 4:30. Reaching that point is key because I now have 3000 feet of decending over 38 miles that takes me into Avon. There are going to be ever so slight climbs at places and my legs will be screaming at me until I make that final stop in Avon and a finish time of around 6pm. They close the ride at 8pm so that gives me a little bit of slack in my schedule.
Will I make it? I hope. If I make it by 6pm, I won't be last but I will have finished. Even if I don't finish, I will have started. As my best friend told me, Dead F'ing Last > Did Not Finish > Did Not Start. I know he stole it from a running blog but it applies to anything. Just attempting something is an accomplishment. Finishing is fantastic but not necessary and, even if you finish, DFL is still something to be proud of and is even a point of pride in some of the highest levels of competition.
Friday, May 17, 2013
Time to start second round of chemo
My first round of oral chemo went fairly smoothly. Today is my 46th birthday and I had a checkup with the oncologist to ensure that the medicine was not negatively affecting my kidney function. I got the thumbs up on the kidneys, white blood counts, weight (up to 176 pounds) but am slightly anemic. All in all, that means we start round 2 of many.
As you recall, I am taking two different drugs. Xeloda is the first drug and is the oral equivalent of another long time drug called flourouracil or 5fu for short. There are many potential side affects of this medication but the only one that I really experienced was more diarrhea than normal. I take Xeloda for 14 days out of a 28 day cycle with three pills in the morning and three at night.
One of the big side affects that I did experience is greatly increased hypochondria. When you start some of these drugs, you immediately become suspicious of anything that happens with your body. Your leg hurts? Maybe that is a side affect. Hmmm, I got more winded on that walk than normal, perhaps it is a side affect. Everything is suspected but most of them are turn out to be just normal experiences, magnified in the light of cancer and chemo.
The second drug I am taking is called Temodar. This one did affect me and I felt it. I take Temodar for the last 5 days of the 14 days I am taking Xeloda. Temodar gives me two side affects: Nausea and fatigue. The first night I took Temodar, I had dry heaves about every hour after I went to bed. To combat this, I got a prescription for Compazine that I take half an hour before the Temodar and the nausea is gone. The doctor has given me a prescription for Zofran as well and I will try that this time as it is supposed to have fewer side affects.
The fatigue is somewhat odd. The first day after starting the Temodar, I was quite tired at work but this is at least partially due to the lack of sleep from the nausea. The second day, work went fine and I did not feel fatigued. The third day, I went on a 20+ mile bike ride with my wife with no issues but the fourth day, I took three naps, totaling 4.5 hours and still went to bed early. The fifth day felt close to normal but I need to take it easy when I am on the Temodar.
One of the questions I get asked the most is how long I will be taking this combination. I am going to take two more cycles, get scans (CT and MRI) and then fly out to New Orleans to determine if the medication is having a positive affect. If it is, we will stay on the drugs for as long as they either shrink the tumors or at least prevent growth. This could be just the next two cycles or it could be years. I believe the average time to tumor progression is on the order of 9 months so I am hoping to be on the drugs that long or longer.
PS: My wife and daughter find it very humorous that I am now on a 28 day cycle...
As you recall, I am taking two different drugs. Xeloda is the first drug and is the oral equivalent of another long time drug called flourouracil or 5fu for short. There are many potential side affects of this medication but the only one that I really experienced was more diarrhea than normal. I take Xeloda for 14 days out of a 28 day cycle with three pills in the morning and three at night.
One of the big side affects that I did experience is greatly increased hypochondria. When you start some of these drugs, you immediately become suspicious of anything that happens with your body. Your leg hurts? Maybe that is a side affect. Hmmm, I got more winded on that walk than normal, perhaps it is a side affect. Everything is suspected but most of them are turn out to be just normal experiences, magnified in the light of cancer and chemo.
The second drug I am taking is called Temodar. This one did affect me and I felt it. I take Temodar for the last 5 days of the 14 days I am taking Xeloda. Temodar gives me two side affects: Nausea and fatigue. The first night I took Temodar, I had dry heaves about every hour after I went to bed. To combat this, I got a prescription for Compazine that I take half an hour before the Temodar and the nausea is gone. The doctor has given me a prescription for Zofran as well and I will try that this time as it is supposed to have fewer side affects.
The fatigue is somewhat odd. The first day after starting the Temodar, I was quite tired at work but this is at least partially due to the lack of sleep from the nausea. The second day, work went fine and I did not feel fatigued. The third day, I went on a 20+ mile bike ride with my wife with no issues but the fourth day, I took three naps, totaling 4.5 hours and still went to bed early. The fifth day felt close to normal but I need to take it easy when I am on the Temodar.
One of the questions I get asked the most is how long I will be taking this combination. I am going to take two more cycles, get scans (CT and MRI) and then fly out to New Orleans to determine if the medication is having a positive affect. If it is, we will stay on the drugs for as long as they either shrink the tumors or at least prevent growth. This could be just the next two cycles or it could be years. I believe the average time to tumor progression is on the order of 9 months so I am hoping to be on the drugs that long or longer.
PS: My wife and daughter find it very humorous that I am now on a 28 day cycle...
Friday, March 29, 2013
And its time for Chemo
I have been dealing with this cancer for 11.5 years now and have taken a number of steps to try and cut it back. These have included numerous surgeries and some medications to slow the growth. To date, the medications have been more of a biotherapy rather than a chemotherapy but that is going to be changing fairly shortly.
When it comes to cancer, the only way to guarantee a cure is to cut it out of the body and that is why surgery is often the first point of attack. When surgery (or similar radiation therapies such as cyberknife) is applied, you are able to actually go in and remove everything that is bad. The removed tumor can be examined for clean tissue on the edges, verifying you got all of it, and assuming it has not yet metastasized, the patient can be declared cured.
At my first surgery in 2001, they got good margins but were already able to determine that my cancer had metastasized to both the messenteric lymph nodes and to my liver. At this point, surgery can no longer be a cure but, fortunately for my cancer, removing the primary can almost double the life expectancy. When most cancers have metastasized, the next step of treatment is usually chemotherapy. Chemotherapies, as most of you know, are usually not fun. In some ways, a poison is injected into your body up until the point you can no longer tolerate it in the hope that it kills the cancer more than it kills your good cells.
For neuroendocrine cancers like carcinoid, chemotherapy usually is not terribly effective. Chemotherapies generally attack fast growing cells (cancers and your hair cells) and attempt to knock them out as they are dividing. Carcinoid is a fairly slow growing cancer so attacking fast growing cells is not very effective but there are some drugs that are proving to be good against carcinoid.
Assuming my kidney functions are up to snuff (just had a blood draw to verify my levels), I will be starting on two different oral chemotherapies. The first drug is called Temodar. Temodar is often given for brain cancers and is relatively well understood by most oncologists. Its most common side affect is nausea and they may give me some additional drugs to help combat the nausea as well. I will be taking this drug on a 28 day cycle, on days 10-14 of that cycle. There are some potentially nasty side affects and I am hoping that I don't fall prey to one of those!
The second drug is called Xeloda. Xeloda is another well known oral chemotherapy that is given for metastatic colon and breast cancers. Xeloda also may cause nausea and, again, additional drugs will be available to try and control the nausea. Xeloda will be on a 28 day cycle as well with my taking pills twice a day (once before breakfast and once after dinner) on days 1-14. Again, there are some potentially bad side affects and I am hoping not to experience those either!
Once my kidney function has been verified and I start on these drugs, I will be taking them for as long as they appear effective. After being on the drugs for 3 months, I will have another CT and MRI and then fly out to New Orleans to verify the efficacy of this treatment. The hope is that these drugs will be able to either shrink or stabilize the growth of the tumors for a significant period of time. At whatever point they prove to be ineffective, we will move on to another treatment such as Afinitor or Sutent which have shown a capability to stop growth but no tumor shrinkage is experienced.
What about PRRT? Well, the clinical trials are still at least six months off in the US (as they have been for at least 5 years) so the only real option there is to go to Europe at a cost of around $20k. Dr. O'Dorisio (the oncologist in Iowa I saw for a few years) is a big proponent for PRRT but generally does not advocate it for lower levels of tumor burden in the liver such as I have. I may have my most recent scans sent out to him and see what his opinions are WRT taking the chance on this treatment to slow down or cut back significantly on the tumors.
Today I am up in Steamboat Colorado, enjoying spring break with my family and getting in some nice spring skiing. Today, I am upright, not 6 feet under, and am able to play hockey and work. Today, I am alive and moving forward. I don't know for sure what tomorrow will bring but, for now, I will enjoy today.
When it comes to cancer, the only way to guarantee a cure is to cut it out of the body and that is why surgery is often the first point of attack. When surgery (or similar radiation therapies such as cyberknife) is applied, you are able to actually go in and remove everything that is bad. The removed tumor can be examined for clean tissue on the edges, verifying you got all of it, and assuming it has not yet metastasized, the patient can be declared cured.
At my first surgery in 2001, they got good margins but were already able to determine that my cancer had metastasized to both the messenteric lymph nodes and to my liver. At this point, surgery can no longer be a cure but, fortunately for my cancer, removing the primary can almost double the life expectancy. When most cancers have metastasized, the next step of treatment is usually chemotherapy. Chemotherapies, as most of you know, are usually not fun. In some ways, a poison is injected into your body up until the point you can no longer tolerate it in the hope that it kills the cancer more than it kills your good cells.
For neuroendocrine cancers like carcinoid, chemotherapy usually is not terribly effective. Chemotherapies generally attack fast growing cells (cancers and your hair cells) and attempt to knock them out as they are dividing. Carcinoid is a fairly slow growing cancer so attacking fast growing cells is not very effective but there are some drugs that are proving to be good against carcinoid.
Assuming my kidney functions are up to snuff (just had a blood draw to verify my levels), I will be starting on two different oral chemotherapies. The first drug is called Temodar. Temodar is often given for brain cancers and is relatively well understood by most oncologists. Its most common side affect is nausea and they may give me some additional drugs to help combat the nausea as well. I will be taking this drug on a 28 day cycle, on days 10-14 of that cycle. There are some potentially nasty side affects and I am hoping that I don't fall prey to one of those!
The second drug is called Xeloda. Xeloda is another well known oral chemotherapy that is given for metastatic colon and breast cancers. Xeloda also may cause nausea and, again, additional drugs will be available to try and control the nausea. Xeloda will be on a 28 day cycle as well with my taking pills twice a day (once before breakfast and once after dinner) on days 1-14. Again, there are some potentially bad side affects and I am hoping not to experience those either!
Once my kidney function has been verified and I start on these drugs, I will be taking them for as long as they appear effective. After being on the drugs for 3 months, I will have another CT and MRI and then fly out to New Orleans to verify the efficacy of this treatment. The hope is that these drugs will be able to either shrink or stabilize the growth of the tumors for a significant period of time. At whatever point they prove to be ineffective, we will move on to another treatment such as Afinitor or Sutent which have shown a capability to stop growth but no tumor shrinkage is experienced.
What about PRRT? Well, the clinical trials are still at least six months off in the US (as they have been for at least 5 years) so the only real option there is to go to Europe at a cost of around $20k. Dr. O'Dorisio (the oncologist in Iowa I saw for a few years) is a big proponent for PRRT but generally does not advocate it for lower levels of tumor burden in the liver such as I have. I may have my most recent scans sent out to him and see what his opinions are WRT taking the chance on this treatment to slow down or cut back significantly on the tumors.
Today I am up in Steamboat Colorado, enjoying spring break with my family and getting in some nice spring skiing. Today, I am upright, not 6 feet under, and am able to play hockey and work. Today, I am alive and moving forward. I don't know for sure what tomorrow will bring but, for now, I will enjoy today.
Wednesday, January 16, 2013
Back to work and moving forward
Today was my first day back to work after the surgery in November. Stephanie and I just returned from New Orleans last night after meeting with my surgeon (Dr. Boudreaux) and the head of surgical oncology (Dr. Woltering) who heads up the neuroendocrine clinic. Dr. Woltering did not spend a large amount of time with us and wants to re-establish a baseline for me now that I have had surgery once again. To this end, I had 8 vials of blood drawn for various tests and will be getting a CT scan of the chest and abdomon, MRI of the liver, and an octreoscan again. We will then return to NOLA at the end of February and begin to formulate a plan forward with Dr. Rodriguez.
We are still looking at a couple of potential treatments. The chemo drugs that are being considered are Temodar/xeloda, Sutent, Afinitor, and a combination of valproic Acid and Black Raspberry Powder. All of these treatments seemed to have anti growth properties when tested against my tumors in petri dishes.
The last of these had the greatest response and we are going to be giving that a try. The downside is that Black Raspberry Powder is exactly what it sounds like. Black Raspberries are freeze dried and ground into a powder and you consume a given dose in a tea or some other method. The dose you take is 1 gram per kilogram of weight per day. This means I would take about 70 grams (equivalent of about 350 black raspberries), soak it in warm water, strain out the sludge the next day and drink that throughout the day.
Most of you know I am usually quite against 'natural' or homeopathic treatments but there is a large amount of scientific material supporting the use of black raspberry and the anti-cancer effects of this. Not to mention, this was directly tested against my tumors in lab conditions and resulted in slowed cancer growth. The downside is the price. As you can imagine, 350 black raspberries (about a pound) equivalent is a bit pricey. The best price I can find is about $300/month for this treatment and it is almost certain that insurance will not pay for this. Ah well.
The other little bombshell that Dr. Boudreaux dropped on us was that the consensus was to just give me reference material for hospice and send me back home. At first, you would think this is exactly what you don't want to hear from your doctor but after a few minutes of consideration, it is exactly what I did want to hear. The consensus was to send me home to die but Dr. Boudreaux decided to operate and the result of that operation has bought me some more time. How long has it bought me? I don't really know but I do know that I have quite a bit of energy now and am able to (and want to) eat voraciously right now.
My first ski day should be this coming Sunday, 1/20 followed by a 5 day (4 ski day) trip to Aspen, starting on 1/23. The week after we get back from Aspen, I will be able to return to the ice and my first day back as goalie should be 2/4 which is awesome. I am becoming accustomed to my new normal. It doesn't mean I have to like the new normal but I am able to live and even thrive with it. The first day of work has gone well and it is nice to start getting back into the swing of things.
We are still looking at a couple of potential treatments. The chemo drugs that are being considered are Temodar/xeloda, Sutent, Afinitor, and a combination of valproic Acid and Black Raspberry Powder. All of these treatments seemed to have anti growth properties when tested against my tumors in petri dishes.
The last of these had the greatest response and we are going to be giving that a try. The downside is that Black Raspberry Powder is exactly what it sounds like. Black Raspberries are freeze dried and ground into a powder and you consume a given dose in a tea or some other method. The dose you take is 1 gram per kilogram of weight per day. This means I would take about 70 grams (equivalent of about 350 black raspberries), soak it in warm water, strain out the sludge the next day and drink that throughout the day.
Most of you know I am usually quite against 'natural' or homeopathic treatments but there is a large amount of scientific material supporting the use of black raspberry and the anti-cancer effects of this. Not to mention, this was directly tested against my tumors in lab conditions and resulted in slowed cancer growth. The downside is the price. As you can imagine, 350 black raspberries (about a pound) equivalent is a bit pricey. The best price I can find is about $300/month for this treatment and it is almost certain that insurance will not pay for this. Ah well.
The other little bombshell that Dr. Boudreaux dropped on us was that the consensus was to just give me reference material for hospice and send me back home. At first, you would think this is exactly what you don't want to hear from your doctor but after a few minutes of consideration, it is exactly what I did want to hear. The consensus was to send me home to die but Dr. Boudreaux decided to operate and the result of that operation has bought me some more time. How long has it bought me? I don't really know but I do know that I have quite a bit of energy now and am able to (and want to) eat voraciously right now.
My first ski day should be this coming Sunday, 1/20 followed by a 5 day (4 ski day) trip to Aspen, starting on 1/23. The week after we get back from Aspen, I will be able to return to the ice and my first day back as goalie should be 2/4 which is awesome. I am becoming accustomed to my new normal. It doesn't mean I have to like the new normal but I am able to live and even thrive with it. The first day of work has gone well and it is nice to start getting back into the swing of things.
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