Friday, April 28, 2006
Clinical Trial Update, and My Thoughts on the Price of Gas
I got some very good news today, my oncologist has confirmed that I’ll be able start my trial on May 8th. As of yesterday, it was looking likely that I wouldn’t be able to start till the end of May, but a woman in France did not qualify for the study and I got bumped back up. I went to bed last night thinking I would have to find another treatment option because of the delays associated with this trial, but it all seems to be working out. My esophagus is slowly healing, and I’m starting to be able to eat more and am feeling much better today than earlier in the week. Add to that the discovery of my missing iPod (under my lazyboy for the last week, Jenny found it) and the sky is looking particularly blue today!
Off to another topic that I’m sure is on everyone’s mind… the price of gas. I’ve been spending some time recently trying to understand what goes into the price of a gallon of gasoline, and why it’s so high. I’ve found that the answer just isn’t that simple. Some facts to consider
-- The United States consumes an average of 20 million barrels of oil per day (about 25% of world consumption) according to the Department of Energy. Of that, about 45 percent is used for motor gasoline.
-- The Unites States imports around 10 million barrels of oil per day, about half of which is from OPEC countries.
-- The leading exporter of oil to the US is Canada, followed by Mexico, Saudi Arabia, Venezuela, and Nigeria.
-- The US maintains a Strategic Petroleum Reserve of ~700 million barrels of crude oil in salt caverns in Texas and Louisiana.
-- There are ~ 170,000 retail gas stations in the United States
Other relevant petroleum statistics can be found here
I've broken down the cost of a $3.07 gallon of gas in California (as published at this website). Where does the money go?
1. $1.70 for the Cost of Crude Oil (~55%): Currently, over half of what you pay is for the crude oil from the ground. Current crude oil costs are over $70 per barrel (as high as they have ever been), and each barrel is equivalent to 42 US gallons. So at $70/barrel, the cost per gallon is $1.67 out of the ground.
2. $0.78 for Refinery Costs & Profit (~25%): Refineries process crude oil into a wide variety of petroleum products, including various grades of automotive gasoline. The US currently has approximately 150 operating oil refineries, most of which are in Texas, Louisiana, and California. Refining costs vary for different regions of the US, depending on the formulations required for those regions.
3. $0.58 for Federal & State Taxes (~19%): The current Federal excise tax on gasoline is 18.4 cents per gallon (since 1993). State taxes vary a good bit, and there are often multiple taxes involved, and taxes on taxes. Hawaii, California, and Nevada have the highest taxes, over 30 cents per gallon, and Alaska has the lowest, under 10 cents per gallon. Federal gas taxes are earmarked exclusively for Federal Highways and Mass Transit Projects.
4. Less than $0.10 for Distribution, Dealer Costs & Profit (< 1%): Typical profits for local gas stations are on the order of 1 to 20 cents per gallon, averaging around 10 cents per gallon. This includes all the cost associated with getting the gasoline to the station, marketing, maintenance etc. As of late, the data seems to indicate that local stations are clearing only single digit cents per gallon, often selling gas at breakeven prices, or even at a loss. In years past, this portion was closer to 10-12% in many of the analyses I found.
So why are prices so high? The easy answer is that worldwide Crude Oil prices are at record highs, but why is that the case? As a worldwide commodity, oil prices are determined by worldwide supply and demand, and are particularly sensitive to volatility (or perceived volatility) in the available supply (which is why tension and unrest in and around OPEC countries will drive prices up). Additionally, worldwide the demand for oil continues to increase (in the US and Asia and beyond). Lastly, the United States’ ability to produce refined petroleum is limited by our current infrastructure (we haven’t built a new refinery in 30 years, and have closed many more) – this is another way of saying that we are very dependent on foreign oil. In the end, the price of gas is determined by what US consumers are willing to pay at the pump.
Traditionally, Americans have proven to be quite insensitive to changes in gas prices, with only minor decreases in gas usage during periods of high gas prices. The reality is that, unlike many other consumer goods, we have no alternative to buying gas for the cars we currently own. Most of us drive just about everywhere we go and to do that we have little choice but to buy gasoline. In the meantime, the standard list of things you can do to reduce gas consumption should be considered (check your tire pressure, combine or eliminate trips in the car, carpool etc). A good list from AAA can be found here…
Most of the proposals coming out of the government in the last week to “do something about it” fail to address any of the supply/demand issues affecting the price of gas, and appear to be nothing more than election year ploys. One particularly sad example are the Bee County, Texas Commissioners who voted this week to have all citizens boycott the 3 Exxon stations in town, until prices drop to $1.30 per gallon (keep in mind that at current world market prices, crude oil costs close to $1.70 per gallon before its refined, shipped, taxed etc). These types of approaches are just downright foolish. I’ve seen several similar boycott strategies promoted in email chains, all of which are similarly flawed and wont work. See snopes.com for a good explanation of why this is so.
In any case, we’ll be spending lots of money driving down to Philly Saturday morning, and I’ll be in at Fox Chase on Monday and Wednesday getting lots of pre-trial tests done (C/T, blood, EKG, MUGA, port installation). It will feel very good to be moving on with my treatment (and not having to fill my days researching the economics of gas prices).
Take care and be well,
Seth
Off to another topic that I’m sure is on everyone’s mind… the price of gas. I’ve been spending some time recently trying to understand what goes into the price of a gallon of gasoline, and why it’s so high. I’ve found that the answer just isn’t that simple. Some facts to consider
-- The United States consumes an average of 20 million barrels of oil per day (about 25% of world consumption) according to the Department of Energy. Of that, about 45 percent is used for motor gasoline.
-- The Unites States imports around 10 million barrels of oil per day, about half of which is from OPEC countries.
-- The leading exporter of oil to the US is Canada, followed by Mexico, Saudi Arabia, Venezuela, and Nigeria.
-- The US maintains a Strategic Petroleum Reserve of ~700 million barrels of crude oil in salt caverns in Texas and Louisiana.
-- There are ~ 170,000 retail gas stations in the United States
Other relevant petroleum statistics can be found here
I've broken down the cost of a $3.07 gallon of gas in California (as published at this website). Where does the money go?
1. $1.70 for the Cost of Crude Oil (~55%): Currently, over half of what you pay is for the crude oil from the ground. Current crude oil costs are over $70 per barrel (as high as they have ever been), and each barrel is equivalent to 42 US gallons. So at $70/barrel, the cost per gallon is $1.67 out of the ground.
2. $0.78 for Refinery Costs & Profit (~25%): Refineries process crude oil into a wide variety of petroleum products, including various grades of automotive gasoline. The US currently has approximately 150 operating oil refineries, most of which are in Texas, Louisiana, and California. Refining costs vary for different regions of the US, depending on the formulations required for those regions.
3. $0.58 for Federal & State Taxes (~19%): The current Federal excise tax on gasoline is 18.4 cents per gallon (since 1993). State taxes vary a good bit, and there are often multiple taxes involved, and taxes on taxes. Hawaii, California, and Nevada have the highest taxes, over 30 cents per gallon, and Alaska has the lowest, under 10 cents per gallon. Federal gas taxes are earmarked exclusively for Federal Highways and Mass Transit Projects.
4. Less than $0.10 for Distribution, Dealer Costs & Profit (< 1%): Typical profits for local gas stations are on the order of 1 to 20 cents per gallon, averaging around 10 cents per gallon. This includes all the cost associated with getting the gasoline to the station, marketing, maintenance etc. As of late, the data seems to indicate that local stations are clearing only single digit cents per gallon, often selling gas at breakeven prices, or even at a loss. In years past, this portion was closer to 10-12% in many of the analyses I found.
So why are prices so high? The easy answer is that worldwide Crude Oil prices are at record highs, but why is that the case? As a worldwide commodity, oil prices are determined by worldwide supply and demand, and are particularly sensitive to volatility (or perceived volatility) in the available supply (which is why tension and unrest in and around OPEC countries will drive prices up). Additionally, worldwide the demand for oil continues to increase (in the US and Asia and beyond). Lastly, the United States’ ability to produce refined petroleum is limited by our current infrastructure (we haven’t built a new refinery in 30 years, and have closed many more) – this is another way of saying that we are very dependent on foreign oil. In the end, the price of gas is determined by what US consumers are willing to pay at the pump.
Traditionally, Americans have proven to be quite insensitive to changes in gas prices, with only minor decreases in gas usage during periods of high gas prices. The reality is that, unlike many other consumer goods, we have no alternative to buying gas for the cars we currently own. Most of us drive just about everywhere we go and to do that we have little choice but to buy gasoline. In the meantime, the standard list of things you can do to reduce gas consumption should be considered (check your tire pressure, combine or eliminate trips in the car, carpool etc). A good list from AAA can be found here…
Most of the proposals coming out of the government in the last week to “do something about it” fail to address any of the supply/demand issues affecting the price of gas, and appear to be nothing more than election year ploys. One particularly sad example are the Bee County, Texas Commissioners who voted this week to have all citizens boycott the 3 Exxon stations in town, until prices drop to $1.30 per gallon (keep in mind that at current world market prices, crude oil costs close to $1.70 per gallon before its refined, shipped, taxed etc). These types of approaches are just downright foolish. I’ve seen several similar boycott strategies promoted in email chains, all of which are similarly flawed and wont work. See snopes.com for a good explanation of why this is so.
In any case, we’ll be spending lots of money driving down to Philly Saturday morning, and I’ll be in at Fox Chase on Monday and Wednesday getting lots of pre-trial tests done (C/T, blood, EKG, MUGA, port installation). It will feel very good to be moving on with my treatment (and not having to fill my days researching the economics of gas prices).
Take care and be well,
Seth
Tuesday, April 25, 2006
The Radiation Blues
Well, any illusions I had about being Superman have been dispelled. Despite not initially feeling any effects from the radiation treatment, over the last several days my esophagus has become increasingly sensitive and painful, and over the last 24 hours I’ve had difficulty swallowing. This is a common side effect, I just didn’t expect it to take this long to manifest. I’m also feeling quite tired and achy. The good news is that it is only temporary and should clear up later in the week. At least I know that the radiation did it’s job.
The kids have been surprisingly receptive to “Turn off the TV Week” and we’ve been finding other fun things to do. Jack and Spencer are both playing soccer which meets twice a week, and yesterday we took the kids to a local military museum where they were able to climb all over tanks and other fun stuff. I’ve gotten lots of good books, and book recommendations, from many of you, and I’m trying to keep up.
The picture above is from a recent “Coaches for Cancer” 5k run in State College. Several SRI employees and their family members participated and raised funds for the American Cancer Society. A big kudos to all those who participated. This coming weekend, two co-workers and friends, Marc and Joe, will be competing in the Savage Adventure Race down in Philly -- 5 miles running and orienteering, 10 miles mountain biking, and 5 miles canoeing. They have raised money with matching funds from SRI, all for the ACS as well. Good luck to both of you, and thanks for supporting a worthy cause.
Seth
Monday, April 24, 2006
Monday Update
No real medical news to report this week. I am still waiting to head into FCCC on the 1st for a port installation and some other tests. The trial is supposed to start on the 8th – I spoke to the trial coordinator this week and she tells me there is a chance this could be delayed, which I’m hoping is not the case.
We’ve had some outstanding spring weather as of late, which has helped keep things cheery around here. This week is National Turn Off the TV Week, which Jenny and I decided our family would participate in. We had the kids make a list of things they would like to do instead, so we’ll see how it goes. Jack lost his first tooth yesterday, so the tooth fairy paid him a visit last night.
For those of you concerned about gas prices this summer, I found a good site that depicts prices by county across the US on an interactive map. See the GasBuddy Website. This site also lets you find prices at individual stations in your area, which may save you some money.
I also wanted to mention an excellent Cancer resource. The National Comprehensive Cancer Network (NCCN) is an alliance of cancer centers and professionals that develops comprehensive guidelines for cancer care. The guidelines are called the “NCCN Clinical Practice Guidelines in Oncology” and define the recognized standard for cancer care for almost all types of cancer. There are separate guidelines for the various types and places of cancer – they generally take the form of decision trees that guide the doctor in determining the course of treatment. If you or someone you know is diagnosed with cancer, this a great place to start to begin to understand what your treatment options are, and start understanding the terminology and issues involved with cancer treatment. They are reviewed and updated yearly. You can download specific guidelines as pdf files at this site.
Also, a very big THANKS to all those families that continue to bring us meals at regular intervals. This is a huge help for our family and we are very appreciative of all those who are lending a hand.
We will be heading to my parents this Saturday to spend some time there before my appointment. We’re still not sure when we’ll be coming back. That’s all for now, please feel free to drop me a line at sethjenny@adelphia.net or seth.edmondson@gmail.com as I am not watching TV this week and have plenty of free time!
Seth
We’ve had some outstanding spring weather as of late, which has helped keep things cheery around here. This week is National Turn Off the TV Week, which Jenny and I decided our family would participate in. We had the kids make a list of things they would like to do instead, so we’ll see how it goes. Jack lost his first tooth yesterday, so the tooth fairy paid him a visit last night.
For those of you concerned about gas prices this summer, I found a good site that depicts prices by county across the US on an interactive map. See the GasBuddy Website. This site also lets you find prices at individual stations in your area, which may save you some money.
I also wanted to mention an excellent Cancer resource. The National Comprehensive Cancer Network (NCCN) is an alliance of cancer centers and professionals that develops comprehensive guidelines for cancer care. The guidelines are called the “NCCN Clinical Practice Guidelines in Oncology” and define the recognized standard for cancer care for almost all types of cancer. There are separate guidelines for the various types and places of cancer – they generally take the form of decision trees that guide the doctor in determining the course of treatment. If you or someone you know is diagnosed with cancer, this a great place to start to begin to understand what your treatment options are, and start understanding the terminology and issues involved with cancer treatment. They are reviewed and updated yearly. You can download specific guidelines as pdf files at this site.
Also, a very big THANKS to all those families that continue to bring us meals at regular intervals. This is a huge help for our family and we are very appreciative of all those who are lending a hand.
We will be heading to my parents this Saturday to spend some time there before my appointment. We’re still not sure when we’ll be coming back. That’s all for now, please feel free to drop me a line at sethjenny@adelphia.net or seth.edmondson@gmail.com as I am not watching TV this week and have plenty of free time!
Seth
Tuesday, April 18, 2006
Fox Chase Update
We had a successful visit with Dr von Mehren at Fox Chase Cancer Center yesterday, and have returned back to State College. Dr von Mehren sees sarcoma patients almost exclusively, and is one of the prominent researchers in soft tissue sarcoma. We discussed several options with her, but at this point it appears likely that I will participate in a clinical trial using an investigational drug called Yondelis or ET-743. This will involve chemotherapy at 3 week intervals administered at Fox Chase, along with period imaging studies and blood count monitoring etc. We have confirmed with the Sloan doctors that they now think the cancer is a Malignant Peripheral Nerve Sheath Tumor (MPNST), which is traditionally less chemo-responsive than LMS, so a clinical trial with a new drug makes a lot of sense at this point.
This trial is a Phase 1 trial (Phase I trials generally examine the safety of various dosage levels of a drug, not the efficacy of the drug itself) that combines Doxorubicin with the investigational drug Yondelis. Yondelis has been studied widely in recent years as a stand alone chemotherapy agent, and shown that it can be quite effective against certain types of soft tissue sarcoma (and other types of cancer as well). In this study, they are adding in a standard chemo drug (the Doxorubicin, also called Adriomycin) to study what doses are tolerable. Results to date have shown the combination to be well-tolerated, so I don’t have any big concerns.
Yondelis (also called ET-743) is an interesting drug in that has been extracted from a marine organism called the Mangrove Sea Squirt (Ecteinascidia turbinate). It was developed by a Spanish company called PharmaMar in conjuction with Johnson & Johnson. The derived drug is a tetrahydroisoquinolone alkaloid, and works by binding to DNA and disrupting its ability to replicate and forcing the cell to die. Dr von Mehren has written a good article on the subject here. You can quickly get lost in the details, but the bottom line is that this drug attacks cancer cells in a novel way and has been shown to be effective against sarcoma and other cancers where there are not a lot of other good options. We have corresponded with quite a few folks who are taking Yondelis, and I feel very positive about this treatment option.
I will be returning to FCCC in two weeks (May 1st) for updated imaging studies of my tumor, blood tests, and to get a port installed. I should start the infusions around May 8th and get them every 3 weeks. The first cycle will require lots of visits, but after that it should only require 1 day every 3 weeks. The number of cycles will depend on my response, side effects, and the overall dose of doxorubicin, but it will probably run through most of the summer. Overall, we really liked Fox Chase and the nurses and doctors there – it was much smaller and less hectic than Sloan. Now it’s just a matter of waiting a couple of weeks to get things started. Jenny and I are hopeful that this treatment will shrink the pelvic tumor sufficiently so that it can be removed surgically, along with any other remaining disease.
Take care everyone,
Seth
This trial is a Phase 1 trial (Phase I trials generally examine the safety of various dosage levels of a drug, not the efficacy of the drug itself) that combines Doxorubicin with the investigational drug Yondelis. Yondelis has been studied widely in recent years as a stand alone chemotherapy agent, and shown that it can be quite effective against certain types of soft tissue sarcoma (and other types of cancer as well). In this study, they are adding in a standard chemo drug (the Doxorubicin, also called Adriomycin) to study what doses are tolerable. Results to date have shown the combination to be well-tolerated, so I don’t have any big concerns.
Yondelis (also called ET-743) is an interesting drug in that has been extracted from a marine organism called the Mangrove Sea Squirt (Ecteinascidia turbinate). It was developed by a Spanish company called PharmaMar in conjuction with Johnson & Johnson. The derived drug is a tetrahydroisoquinolone alkaloid, and works by binding to DNA and disrupting its ability to replicate and forcing the cell to die. Dr von Mehren has written a good article on the subject here. You can quickly get lost in the details, but the bottom line is that this drug attacks cancer cells in a novel way and has been shown to be effective against sarcoma and other cancers where there are not a lot of other good options. We have corresponded with quite a few folks who are taking Yondelis, and I feel very positive about this treatment option.
I will be returning to FCCC in two weeks (May 1st) for updated imaging studies of my tumor, blood tests, and to get a port installed. I should start the infusions around May 8th and get them every 3 weeks. The first cycle will require lots of visits, but after that it should only require 1 day every 3 weeks. The number of cycles will depend on my response, side effects, and the overall dose of doxorubicin, but it will probably run through most of the summer. Overall, we really liked Fox Chase and the nurses and doctors there – it was much smaller and less hectic than Sloan. Now it’s just a matter of waiting a couple of weeks to get things started. Jenny and I are hopeful that this treatment will shrink the pelvic tumor sufficiently so that it can be removed surgically, along with any other remaining disease.
Take care everyone,
Seth
Friday, April 14, 2006
Friday Night Update
It’s Friday night and I am anxious to get down to Fox Chase for my next appointment. I am meeting with Dr von Mehren this coming Monday morning (the 17th) to discuss my chemotherapy options. Jenny and I have been busy getting our records together for the visit, and trying to get all the necessary pathology slides and reports in our hands. We were reviewing the just-completed pathology report from Sloan today and noticed that after review of all available tissue, the pathologist’s preferred diagnosis was “malignant peripheral nerve sheath tumor” (another sub-type of soft tissue sarcoma), not leiomyosarcoma. Unfortunately, there seems to be less data available on-line regarding MPNST that on LMS, but I have learned that differentiating between the two can be difficult. My impression is that pathology can be a little bit science and a little bit fortune telling. Regardless, the “standard of care” treatment for either is the same, and I don’t expect the overall treatment regimen to vary. We did find a clinical trial at Fox Chase for MPNST that we will be asking about, in addition the main-line AIM treatment. I must admit to being frustrated with having to fight such a mysterious enemy, but I will fight the enemy just the same.
We will be heading down to my parents on Sunday after celebrating Easter here. I expect the Easter bunny will visit both places, though. It has been a busy week overall. We were very happy to see my Grandparents and Aunt Claudia and Margaret for a short visit on Thursday--they stopped by on their way back to Ohio. I also managed to get out for lunch with some co-workers and catch up on all the exciting things I am missing at work. The big news is that I have a new Lazy-boy recliner which is quite heavenly. It doesn’t have a beer fridge or anything that fancy, but it would be hard to beat for my afternoon nap. My sincere gratitude goes out to “you know who”, thanks a million. The included picture shows Nathan trying out the chair in his preferred mode of dress.
Take care, and a Happy Easter and Passover to all.
Seth
Monday, April 10, 2006
Radiation Treatment Complete
Well I'm happy to report that we successfully completed my IMRT radiation treatment today. Things went well and I am now in New Jersey at Tom & JoAnne's place. We left State College this morning around 7:30 and made it into NYC around noon. Jenny did a commendable job driving in Manhattan for this first time, and we managed to avoid rush hour on both the way in and way out.
The treatment itself took about almost 2 hours. We had a 3:30 appointment and we were called back around 4pm. In the afternoon, we coordinated with the pathology dept to have my slides and reports sent out for my appointment at Fox Chase. We had a small lunch and spent the afternoon reading before I was called back. The treatment itself was not painful except that you are immobilized on a hard platform for an extended period. My body got stiff and sore, but it was tolerable. It took about an hour to get my position "just right"; they would scan and then make small adjustments. The radiation then took another 30+ minutes. It was painless, but you could hear the loud whine of the x-ray transmitter. They did 18 doses, each about 45 seconds, from about eight different positions. The angles of the positions are determined via a sophisticated algorithm, and targeted the T4 and T5 vertebrae while avoid the spinal column and other vital organs. I am expecting some pain and discomfort to develop, but have not really felt any side effects yet.
Jenny and I were able to see Lara for a little while, who had just picked up her wedding dress. She is getting married in July, and Jenny and I are hoping to be able to make the trip to Las Vegas to attend. I don't know how I'll be feeling then, but we'll just wait and see. I already cancelled a trip to Las Vegas with my college friends at the end of April, but I have no doubt they'll have a blast without me :}
Jenny and I will be heading home tomorrow mid morning, and get back to our suburban recovery mode. We are still researching and communicating with other LMS patients about new drugs, treatments, and many other details.
Our continued thanks for all the prayers and support, we are very grateful. I'll keep everyone posted on how I'm feeling this week, and how things go at Fox Chase. I am feeling very relieved to have the radiation treatment behind me, and anxious to get to the next phase.
All the best to everyone,
Seth
The treatment itself took about almost 2 hours. We had a 3:30 appointment and we were called back around 4pm. In the afternoon, we coordinated with the pathology dept to have my slides and reports sent out for my appointment at Fox Chase. We had a small lunch and spent the afternoon reading before I was called back. The treatment itself was not painful except that you are immobilized on a hard platform for an extended period. My body got stiff and sore, but it was tolerable. It took about an hour to get my position "just right"; they would scan and then make small adjustments. The radiation then took another 30+ minutes. It was painless, but you could hear the loud whine of the x-ray transmitter. They did 18 doses, each about 45 seconds, from about eight different positions. The angles of the positions are determined via a sophisticated algorithm, and targeted the T4 and T5 vertebrae while avoid the spinal column and other vital organs. I am expecting some pain and discomfort to develop, but have not really felt any side effects yet.
Jenny and I were able to see Lara for a little while, who had just picked up her wedding dress. She is getting married in July, and Jenny and I are hoping to be able to make the trip to Las Vegas to attend. I don't know how I'll be feeling then, but we'll just wait and see. I already cancelled a trip to Las Vegas with my college friends at the end of April, but I have no doubt they'll have a blast without me :}
Jenny and I will be heading home tomorrow mid morning, and get back to our suburban recovery mode. We are still researching and communicating with other LMS patients about new drugs, treatments, and many other details.
Our continued thanks for all the prayers and support, we are very grateful. I'll keep everyone posted on how I'm feeling this week, and how things go at Fox Chase. I am feeling very relieved to have the radiation treatment behind me, and anxious to get to the next phase.
All the best to everyone,
Seth
Thursday, April 06, 2006
What Comes Next
Things have been relatively quiet this week, and Jenny and I have been busy researching on all sorts of medical topics. Fortunately for me, my company kindly supplied me with a new laptop and wireless which has allowed me to surf away from the comfort of my lazy boy chair. What a life – internet access, cable TV and a lazy boy! Many thanks to Marc, Doug and Ryan for getting me hooked up.
We’ve made some progress in determining a course of action for chemotherapy. The protocol we will likely pursue is called AIM, which stands for Adriamycin, Ifosfamide, and Mesna, the 3 drugs that make up the protocol. Adriamycin is also commonly called Doxorubicin. Because the AIM protocol involves infusions over 3 days every 3 weeks, we have decided to look into getting treatment at Fox Chase Cancer Center in Philadelphia, near my parents. This would be much easier (logistically, anyway) than getting the treatment in NYC. Fox Chase has a sarcoma team, and Dr D’Adamo had recommended an oncologist there named Dr von Mehren. I am still waiting to hear about an appointment there, but I’m hoping to see her the week of April 17th. Fox Chase also routinely participates in Clinical Trials for sarcoma, so we should have other options available to us as time goes by.
I am still on the schedule for my radiation treatment this coming Monday. Jenny and I will be leaving early Monday am and plan on staying in Bayonne on Monday night. We’ll head home Tuesday and I am hoping the short term side effects are not too painful.
One of my favorite authors in recent years has been Stephen Jay Gould, a prolific author of essays on natural history. I enjoy his choice of subjects and his clear, logical style of writing. I didn’t know it until this week, but Gould was a 20-year cancer survivor until his death in 2002 at the age of 60. I stumbled across a short essay of his about statistics and cancer survival that I found very comforting. It reaffirmed for me the importance of a positive attitude and the dangers of getting caught up in survival statistics. You can read his essay here.
Jenny and I appreciate everyone’s continued support. The kids are doing well, and I’ll try to get some more pictures posted.
We’ve made some progress in determining a course of action for chemotherapy. The protocol we will likely pursue is called AIM, which stands for Adriamycin, Ifosfamide, and Mesna, the 3 drugs that make up the protocol. Adriamycin is also commonly called Doxorubicin. Because the AIM protocol involves infusions over 3 days every 3 weeks, we have decided to look into getting treatment at Fox Chase Cancer Center in Philadelphia, near my parents. This would be much easier (logistically, anyway) than getting the treatment in NYC. Fox Chase has a sarcoma team, and Dr D’Adamo had recommended an oncologist there named Dr von Mehren. I am still waiting to hear about an appointment there, but I’m hoping to see her the week of April 17th. Fox Chase also routinely participates in Clinical Trials for sarcoma, so we should have other options available to us as time goes by.
I am still on the schedule for my radiation treatment this coming Monday. Jenny and I will be leaving early Monday am and plan on staying in Bayonne on Monday night. We’ll head home Tuesday and I am hoping the short term side effects are not too painful.
One of my favorite authors in recent years has been Stephen Jay Gould, a prolific author of essays on natural history. I enjoy his choice of subjects and his clear, logical style of writing. I didn’t know it until this week, but Gould was a 20-year cancer survivor until his death in 2002 at the age of 60. I stumbled across a short essay of his about statistics and cancer survival that I found very comforting. It reaffirmed for me the importance of a positive attitude and the dangers of getting caught up in survival statistics. You can read his essay here.
Jenny and I appreciate everyone’s continued support. The kids are doing well, and I’ll try to get some more pictures posted.
Saturday, April 01, 2006
April 1st Update
Jenny and I returned from NYC this afternoon and had a successful trip. Thanks to my Uncle Alan for driving us in and out of the city, and a big thanks to Lara for a cozy place to call home while we were there.
Thursday was a very long day with 3 appts in 3 different locations in the city. We first met with Dr D'Adamo, the medical oncologist. We discussed 4 different options (different drug combinations, some of them experimental) for systemic chemotherapy but didn't make any decisions. All of them have pros and cons, and none of them are effective for all patients with LMS (leiomyosarcoma). Jenny and I will be doing some extensive research on these options, and contacting other folks via an LMS listserve to find out their experiences with these protocols. There are way to many variables involved to make the decision an easy one, and, in reality, I don't think there is a "right" decision. Many patients with LMS will try several different protocols before finding something that works, so we'll have to just wait and see.
We met with my surgeon, and things are in good shape with my spine. The x-ray looked good and I am continuing to gain stamina and strength. Neurologically, the doctors are very pleased with my condition, so the surgery really went well.
Lastly, we met with the radiation oncologist, and learned the details of my radiation treatment. I will be getting a single radiation treatment on the T4 and T5 vertebrae on April 10th. It will be the equivalent of 11 weeks of normal radiation treatment in a single dose - sarcoma tends to be more sensitive to larger doses vs multiple smaller doses.
Friday we returned to the hospital for my myelogram and IMRT simulation. I had 10 cc's of dye injected into my spinal column and then had body molds made for my torso and head. You are immobilized on a table with the body molds and a C/T scan is taken so that they can determine precisely where the X-ray beams will be aimed and focused etc. Sloan has pioneered this precise radiation treatment for cases just like mine where radiation needs to be administered in sensitive areas like the spine. I then had 4 small tattoos put on my chest to provide calibration points for when I return for the actual treatment. The whole day took about 9 hours, but I was laying down for almost all of it. There are some short term side effects from the treatment (skin burns, sore throat) but I should be able to move on the next phase of treatment after a week or two.
All in all, it was a very tiring two days, and we returned back to State College today. We'll be returning to NYC next Sunday, but haven't worked out travel plans just yet.
Once Jenny and I get some more details on what chemotherapy treatment we will be pursuing I'll share some more details.
Our continued thanks for all the calls, cards, visits, emails and prayers, we sincerely appreciate all the support we are receiving from everyone.
Seth
Thursday was a very long day with 3 appts in 3 different locations in the city. We first met with Dr D'Adamo, the medical oncologist. We discussed 4 different options (different drug combinations, some of them experimental) for systemic chemotherapy but didn't make any decisions. All of them have pros and cons, and none of them are effective for all patients with LMS (leiomyosarcoma). Jenny and I will be doing some extensive research on these options, and contacting other folks via an LMS listserve to find out their experiences with these protocols. There are way to many variables involved to make the decision an easy one, and, in reality, I don't think there is a "right" decision. Many patients with LMS will try several different protocols before finding something that works, so we'll have to just wait and see.
We met with my surgeon, and things are in good shape with my spine. The x-ray looked good and I am continuing to gain stamina and strength. Neurologically, the doctors are very pleased with my condition, so the surgery really went well.
Lastly, we met with the radiation oncologist, and learned the details of my radiation treatment. I will be getting a single radiation treatment on the T4 and T5 vertebrae on April 10th. It will be the equivalent of 11 weeks of normal radiation treatment in a single dose - sarcoma tends to be more sensitive to larger doses vs multiple smaller doses.
Friday we returned to the hospital for my myelogram and IMRT simulation. I had 10 cc's of dye injected into my spinal column and then had body molds made for my torso and head. You are immobilized on a table with the body molds and a C/T scan is taken so that they can determine precisely where the X-ray beams will be aimed and focused etc. Sloan has pioneered this precise radiation treatment for cases just like mine where radiation needs to be administered in sensitive areas like the spine. I then had 4 small tattoos put on my chest to provide calibration points for when I return for the actual treatment. The whole day took about 9 hours, but I was laying down for almost all of it. There are some short term side effects from the treatment (skin burns, sore throat) but I should be able to move on the next phase of treatment after a week or two.
All in all, it was a very tiring two days, and we returned back to State College today. We'll be returning to NYC next Sunday, but haven't worked out travel plans just yet.
Once Jenny and I get some more details on what chemotherapy treatment we will be pursuing I'll share some more details.
Our continued thanks for all the calls, cards, visits, emails and prayers, we sincerely appreciate all the support we are receiving from everyone.
Seth
