January Update
January 11, 2010
Sorry that there hasn’t been an update in so long. I spent the fall continuing with a new chemo regimen recommended at Dana Farber. This was not an easy treatment and it left me with weeks of fuzzy thinking and exhaustion. I also battled some respiratory infections as well. To top that off, the result of this protocol was not very good, and despite my requests, the doctors at Dana have not been willing to return to the treatment that did work much better on the tumors because of the side effects it caused. All of this created urgency for my return to Germany and hopefully more effective treatment there. Thanks to the fundraising of my friends and many of your donations I was able to plan another trip to Germany. Right now I am at the clinic in Germany having had one full day of treatment, with many more to follow. The organizing of the plan and the travel was very difficult and a story to tell at another time. For right now I just wanted to let you know that these treatments are now a necessity given the poor results of the chemo in Boston. I will be here for about 3 weeks and will update when I can. The doctors at Dana will do follow up tests about a month after I get back and I expect to need a return trip relatively soon.
Thanks for the continued support.
Thanks for the continued support.
September Update
September 30, 2009
Well my August scans were not good. The cancer was active in my liver again. When I was in Germany, and afterwards, they thought I could skip the usual followup visit, partly because of my lack of funds and partly because of my good results. I guess not.
Anyway, apparently the chemo at Dana continued to suppress the cancer enough so that it could not be seen on the interim C-T scans. After the break from treatment it showed again. I have started chemo again and am doing a new protocol from the Revici Institute. Dr. Douwes, in Germany, still thinks they can get rid of it. He wants me to come for three separate trips, the first for three weeks. Assuming I get good results, the followup will be about two months later.
Thank you all for following this.
Anyway, apparently the chemo at Dana continued to suppress the cancer enough so that it could not be seen on the interim C-T scans. After the break from treatment it showed again. I have started chemo again and am doing a new protocol from the Revici Institute. Dr. Douwes, in Germany, still thinks they can get rid of it. He wants me to come for three separate trips, the first for three weeks. Assuming I get good results, the followup will be about two months later.
Thank you all for following this.
Chemo Update
May 31, 2009
Well I have completed the two months of chemo I wrote about in the last update.
After I finished, one of the nurse practitioners told me that many people are unable to complete the treatment. Either they have too many medical complications and/or
they can not deal with the discomfort and dysfunction.
By utilizing acupuncture, herbs, supplements and meditation I was able to reduce the side effects. Unlike many people, I did not need to be hospitalized nor did I need any transfusions during this process.
Also, my previous martial arts training was very helpful as I am able to tolerate a lot of physical discomfort and not be too upset by it.
Now for the news; my C-T scan was clear again for the third time!
I am now able to stop chemo for the time being. I will have another scan in August.
In the meantime, I will be continuing all the other protocols. I will be sending my records to Germany and will find out if I need to go back soon or if I can wait a while.
Additionally, Dr. Enzinger prescribed for me to do 30 minutes of aerobic activity daily as soon as I am able. The Dana just completed a study showing this reduces the chance of recurrence of Gastric Cancers.
Thank you all for your emails.
After I finished, one of the nurse practitioners told me that many people are unable to complete the treatment. Either they have too many medical complications and/or
they can not deal with the discomfort and dysfunction.
By utilizing acupuncture, herbs, supplements and meditation I was able to reduce the side effects. Unlike many people, I did not need to be hospitalized nor did I need any transfusions during this process.
Also, my previous martial arts training was very helpful as I am able to tolerate a lot of physical discomfort and not be too upset by it.
Now for the news; my C-T scan was clear again for the third time!
I am now able to stop chemo for the time being. I will have another scan in August.
In the meantime, I will be continuing all the other protocols. I will be sending my records to Germany and will find out if I need to go back soon or if I can wait a while.
Additionally, Dr. Enzinger prescribed for me to do 30 minutes of aerobic activity daily as soon as I am able. The Dana just completed a study showing this reduces the chance of recurrence of Gastric Cancers.
Thank you all for your emails.
Update
March 17, 2009
Well I have not updated for a while. The primary reason being that the chemo made me so mentally dysfunctional and exhausted that it was all I could do to take care of myself and Aaron.
Apparently I am very sensitive to the chemo. I had lost my vision, briefly, several times from one of the drugs. it is unknown whether this could become permanent. As a result, Dr.Enzinger,at Dana-Farber, has decided to drop this drug from the protocol.
On March 10th I had C-T scans again. Today I received the results. The scans were clear again! This is great news as it is the second clear scan.
I will be starting two more months of chemo next week and then will have more scans the end of May.
I am continuing with the injections and biological meds,supplement,herbs from the Revici institute and from St.George hospital in Germany. Dr. Rothfeld has been giving me peptide injections as well.
I am fortunate that the cancer seems to be as sensitive as I am to all this.
Apparently I am very sensitive to the chemo. I had lost my vision, briefly, several times from one of the drugs. it is unknown whether this could become permanent. As a result, Dr.Enzinger,at Dana-Farber, has decided to drop this drug from the protocol.
On March 10th I had C-T scans again. Today I received the results. The scans were clear again! This is great news as it is the second clear scan.
I will be starting two more months of chemo next week and then will have more scans the end of May.
I am continuing with the injections and biological meds,supplement,herbs from the Revici institute and from St.George hospital in Germany. Dr. Rothfeld has been giving me peptide injections as well.
I am fortunate that the cancer seems to be as sensitive as I am to all this.
Chemo
January 01, 2009
I have started Chemo again. I do not like the experience of it but am grateful for the technology. The worst part is the loss of energy and ability to think clearly. It is difficult to describe the effect of the chemo on mental functioning. The physical side effects are no fun either but are more manageable with drugs, herbs, and acupuncture. I will probably need to go back to Germany sometime between April and the summer. The exact timing is unclear and depends on how I do with the chemo.
Meanwhile, I am also continuing the Revici Institute protocol that I started on in the fall and also have added the supplements and injections prescribed by Dr. Douwes in Germany. I am injecting myself four times per week with various immune stimulants. Dr. Glenn Rothfeld in Arlington Ma. and Dr. Julian Kenyon in Great Britain are helping me navigate the choices of therapies.
Meanwhile, I am also continuing the Revici Institute protocol that I started on in the fall and also have added the supplements and injections prescribed by Dr. Douwes in Germany. I am injecting myself four times per week with various immune stimulants. Dr. Glenn Rothfeld in Arlington Ma. and Dr. Julian Kenyon in Great Britain are helping me navigate the choices of therapies.
Results
December 23, 2008
I met with my doctors at Dana-Farber today. The scans did not show any tumors! There were NO visible tumors. The results from the treatment in Germany could not have been better. This does not mean I am cured as there is no way to test for microscopic size tumors. This is a big step in the right direction. The doctor at Dana wants me to start chemo again. I have to talk to Dr. Douwes in Germany to get his strategy.
Germany Treatments
December 12, 2008
First, let me say thanks to everyone who helped me get to Klinik St.George (Hospital St. George) in Germany. The medical care was excellent and hopefully will show good results when I have my scans in a couple of weeks. I thought you would all like to know what the trip was like including the hospital and the treatments.
Klinik St.George is actually a small licensed hospital in Bad Aibling, Germany. Bad Aibling is a small town about one hour from Munich by train. It is not very far from the Alps. The towns name means Mud Baths and is historically famous for health giving mud and mineral baths. The town consists of homes, hotels, various small stores and restaurants, one move theatre and many pharmacies, and doctors’ offices and a few health food stores. Actually, almost every other building was a doctor’s office or pharmacy!
Hospital St.George is a converted small hotel with two wings and a lobby/business area in the center. The inpatient rooms occupy one wing. The other wing is occupied by the various types of treatments rooms as well as an out patient clinic. Over the reception area, in the center, is the whole body hyperthermia unit and its inpatient recovery rooms as well as the main nurse’s station.
While there I met six or seven staff physicians and quite a few nurses as well as the various therapy givers. (Some were nurses, some had other credentials.) One of the newer physicians was Hungarian but had completed an internship or residency at Mass General about 12 years ago, so he and I were able to chat about Boston.
As an inpatient, my daily schedule was fairly full. The nurse would come in around 7 or 7:30 am and check my temp and blood pressure. Then I would get an injection of an immune system booster. Following that I would go to the cafeteria for breakfast (the food was not very good.). I would also be given my assortment of pills for the day. In addition to what I had brought with me, they added about 6 or 7 more per meal to what I had been taking. After breakfast, I would get an 2 hour IV of Vitamin C. Usually, during that time, the physicians were making their rounds and anywhere from 2 to 5 of them would come in to talk with me. Following that IV, I would either get another IV (for about 90 minutes or so) or I would go for local Hyperthermia over my liver and stomach. This would take about 90 minutes. If I did not get the IV beforehand, I would then be given it after the local hyperthermia. For those who are interested, the local hyperthermia is done with a very hi-tech instrument which emits radio frequency waves through a water filter. The rf waves are selectively absorbed into the denser tumor tissue with little injury to the healthy tissue. The water medium keeps the device fairly cool to the touch but inside, I could feel parts of my liver and stomach getting very hot. Ideally, they are trying to heat the tumor tissue as hot as possible. Following the local hyperthermia, I would on some days, be given IV ozone treatment. In this treatment about a pint of blood is removed via IV, mixed with ozone and then put back in circulation via IV. Well that was my basic schedule. I generally finished around 4 or 5 pm each day. On Fridays, I also got more detox therapy in the form of a colonic.( Saturday I had off). On Sundays I was allowed to only eat breakfast but was given electrolyte rich broth to drink all day while I also took laxatives. All this was to prepare for the whole body hyperthermia on Mondays (for me). Prior to the whole body hyperthermia I also received an enema. The hospital has done over 12,000 whole body hyperthermia treatments and has discovered that patients have much less pain afterwards if the bowels are clear.
Whole body hyperthermia is about a six hour or so procedure. The purpose is three fold; to raise the core body temperature high enough that the more heat sensitive cancer cells die off, to change the proteins in the cancer cells so the immune system can recognize and attack the cancer cells, and to make the cancer cell membrane more permeable to chemo therapy, both natural and orthodox chemotherapy. Here's what was done: I would go up to the hyperthermia room and was asked by the nurse to lie down on the hyperthermia bed. This bed is almost the same as a hospital bed but with some additions. Overhead is an array of water filtered Infrared lights. Around the bed, is a kind of see through curtain which is mostly closed during the hyperthermia. After lying down , I was hooked to various monitoring devices: Blood oxygen sensors, EKG, lung function monitor, thermometers inserted everywhere! Then, in my case, a chemo IV was hooked up with about a 35% dose of the same drugs as at Dana Farber plus one additional drug. Of course there is also a saline IV for fluid. Then I was given a strong sedative by IV and I went to sleep until the nurse woke me up six or seven hours later. While I was sleeping, my core body temperature was slowly raised to about 107 degrees and kept there for a couple of hours and then slowly lowered back to normal. Afterwards, I was put in a room next to the nurse’s station and monitored hourly until about 3 am when I was allowed to sleep through until Tuesday morning. Then I was shown back to my room and allowed to eat breakfast. I was then given an IV of Chemo with a pump for the next six hours or so. Because my energy recovered relatively quickly I was back to the local hyperthermia by Tuesday afternoon. Other than feeling achy like from flu and feeling tired the whole body hyperthermia was not too uncomfortable. Of course, I was asleep during the actual procedure! My energy was mostly recovered by Wed afternoon. Even Tuesday night, I was able to walk down the street to a restaurant for dinner.
Being there alone and doing all this was emotionally challenging to say the least. I appreciate the cards and emails I received while there, and since I have gotten back.
I did have a chance to talk with several other patients while there. The patients I met were from Germany, the USA, Ireland, and Israel. Some were there for the first time and some for their follow-up visit. Most had been referred by friends who had successful outcomes. Hopefully, I will be joining the successful list.
Thanks again to all who helped make this possible and who have supported me.
Joe
Klinik St.George is actually a small licensed hospital in Bad Aibling, Germany. Bad Aibling is a small town about one hour from Munich by train. It is not very far from the Alps. The towns name means Mud Baths and is historically famous for health giving mud and mineral baths. The town consists of homes, hotels, various small stores and restaurants, one move theatre and many pharmacies, and doctors’ offices and a few health food stores. Actually, almost every other building was a doctor’s office or pharmacy!
Hospital St.George is a converted small hotel with two wings and a lobby/business area in the center. The inpatient rooms occupy one wing. The other wing is occupied by the various types of treatments rooms as well as an out patient clinic. Over the reception area, in the center, is the whole body hyperthermia unit and its inpatient recovery rooms as well as the main nurse’s station.
While there I met six or seven staff physicians and quite a few nurses as well as the various therapy givers. (Some were nurses, some had other credentials.) One of the newer physicians was Hungarian but had completed an internship or residency at Mass General about 12 years ago, so he and I were able to chat about Boston.
As an inpatient, my daily schedule was fairly full. The nurse would come in around 7 or 7:30 am and check my temp and blood pressure. Then I would get an injection of an immune system booster. Following that I would go to the cafeteria for breakfast (the food was not very good.). I would also be given my assortment of pills for the day. In addition to what I had brought with me, they added about 6 or 7 more per meal to what I had been taking. After breakfast, I would get an 2 hour IV of Vitamin C. Usually, during that time, the physicians were making their rounds and anywhere from 2 to 5 of them would come in to talk with me. Following that IV, I would either get another IV (for about 90 minutes or so) or I would go for local Hyperthermia over my liver and stomach. This would take about 90 minutes. If I did not get the IV beforehand, I would then be given it after the local hyperthermia. For those who are interested, the local hyperthermia is done with a very hi-tech instrument which emits radio frequency waves through a water filter. The rf waves are selectively absorbed into the denser tumor tissue with little injury to the healthy tissue. The water medium keeps the device fairly cool to the touch but inside, I could feel parts of my liver and stomach getting very hot. Ideally, they are trying to heat the tumor tissue as hot as possible. Following the local hyperthermia, I would on some days, be given IV ozone treatment. In this treatment about a pint of blood is removed via IV, mixed with ozone and then put back in circulation via IV. Well that was my basic schedule. I generally finished around 4 or 5 pm each day. On Fridays, I also got more detox therapy in the form of a colonic.( Saturday I had off). On Sundays I was allowed to only eat breakfast but was given electrolyte rich broth to drink all day while I also took laxatives. All this was to prepare for the whole body hyperthermia on Mondays (for me). Prior to the whole body hyperthermia I also received an enema. The hospital has done over 12,000 whole body hyperthermia treatments and has discovered that patients have much less pain afterwards if the bowels are clear.
Whole body hyperthermia is about a six hour or so procedure. The purpose is three fold; to raise the core body temperature high enough that the more heat sensitive cancer cells die off, to change the proteins in the cancer cells so the immune system can recognize and attack the cancer cells, and to make the cancer cell membrane more permeable to chemo therapy, both natural and orthodox chemotherapy. Here's what was done: I would go up to the hyperthermia room and was asked by the nurse to lie down on the hyperthermia bed. This bed is almost the same as a hospital bed but with some additions. Overhead is an array of water filtered Infrared lights. Around the bed, is a kind of see through curtain which is mostly closed during the hyperthermia. After lying down , I was hooked to various monitoring devices: Blood oxygen sensors, EKG, lung function monitor, thermometers inserted everywhere! Then, in my case, a chemo IV was hooked up with about a 35% dose of the same drugs as at Dana Farber plus one additional drug. Of course there is also a saline IV for fluid. Then I was given a strong sedative by IV and I went to sleep until the nurse woke me up six or seven hours later. While I was sleeping, my core body temperature was slowly raised to about 107 degrees and kept there for a couple of hours and then slowly lowered back to normal. Afterwards, I was put in a room next to the nurse’s station and monitored hourly until about 3 am when I was allowed to sleep through until Tuesday morning. Then I was shown back to my room and allowed to eat breakfast. I was then given an IV of Chemo with a pump for the next six hours or so. Because my energy recovered relatively quickly I was back to the local hyperthermia by Tuesday afternoon. Other than feeling achy like from flu and feeling tired the whole body hyperthermia was not too uncomfortable. Of course, I was asleep during the actual procedure! My energy was mostly recovered by Wed afternoon. Even Tuesday night, I was able to walk down the street to a restaurant for dinner.
Being there alone and doing all this was emotionally challenging to say the least. I appreciate the cards and emails I received while there, and since I have gotten back.
I did have a chance to talk with several other patients while there. The patients I met were from Germany, the USA, Ireland, and Israel. Some were there for the first time and some for their follow-up visit. Most had been referred by friends who had successful outcomes. Hopefully, I will be joining the successful list.
Thanks again to all who helped make this possible and who have supported me.
Joe