It turns out that February 1, 2010 was a watershed event, because afterwards my condition deteriorated in a hurry. Before February 1, I was 100% functional, i.e. drive our car, able move effortlessly, run on the lava fields in Honaunau, etc. but from that day forward I was going downhill, fast.
I was in much worse shape than I thought. I only learned later, had I not left Hawaii, the doctors at UCSF told me that I would either be heavily handicapped now or even dead.
In any case, the cancer was within days of killing me. My parents were adamant to get me to UCSF, even though I was opposed to the whole idea of leaving paradise.
My parents and I took an emergency flight to SFO on 2/15. They checked me into the ER at UCSF, and the medical staff immediately went about treating me for my cancer.
UCSF extensive medical testing (including MRI study at UCSF) the radiologist determined that while I had correctly determined that my alternative treatments finally reversed tumor volume growth, I had missed the linear growth in one critical direction, and the tumor was growing into my brain!
This verified my parent’ s worst fears, and we had to decide how to proceed on the 16th.
Thus, late on the afternoon of 2/16, our family and my friends Deb Feng & Jacob Cohen (both are from Ames) transformed my room into a “war room”, and Jacob walked us through the simple concepts of a war:
This tumor needs to be eliminated. We cannot have ANY surviving tumor cells in my brain. Therefore, I need to fight with everything I got, with overwhelming force, meaning all tools must be considered, including surgery (that was a given, considering my condition), chemo, radiation, clinical trials, immune boosters, alternative treatments, diets, etc. I have to this battle-by-battle, and attack the tumor relentlessly.
- The first battle was the resection of the tumor.
- The second battle was going to be chemotherapy and radiation (undergoing right now).
- The third battle would use a new experimental vaccine made from the patient’s own tumor.
- I will fight on as long as it takes, and whatever battles I have to fight. I do NOT want a recurrence of the tumor.
While my parents had met with Dr Parsa (the neurosurgeon, a man of very few words even with his friends an colleagues) before, I met him for the first time late in the afternoon on 2/16. Within a few minutes, not only had I decided to accept chemotherapy and radiation as part as of my treatment, but also decided on a date for the surgery and decided to be part of his experimental vaccine trial.
So the dialog between the two of us went something like this:
"I am Dr. Andrew Parsa, and I understand you want your tumor removed."
"That is correct."
"I also heard you are interested in our experimental trial?"
"Correct."
"So you are willing to undergo chemo and radiation treatment in order to receive the experimental vaccine trial."
"Yes, correct."
“So let me get this all straight: you will undergo surgery, then you are willing to undergo radiation and chemotherapy to be enrolled in the experimental vaccine trial?”
“Yes” I said with a certain eagerness.
"So now we need to find a date for your surgery."
“Yes indeed, and in a hurry,” I thought aloud.
My mother told me later how surprised she was, because I was so eager to go ahead with the surgery, no hesitation this time compared to the days of agonizing in CUMC in NYC.
We had on the wall a letter-sized calendar with the dates of 2/17 to 2/24 clearly marked off. 2/17 was a Wednesday, as was 2/24.
It turns out that the days Dr. Parsa does not operate on are Tuesdays and Thursdays, so that left 2/17, 2/19 (Friday), 2/22 and 2/24. He went on to helpfully explain that tumor cells "march out of the boundary of the tumor at a certain rate (whatever that rate may be), and they do this all the time", and postponing any further operation “would just make it worse, as more tumor cells migrate into the healthy brain tissue”. So forget about next week. So my first thought was: “Friday? Why wait, no reason, besides two more agonizing days to rethink my decision, plus the image of marching cancerous glio cells really is not a nice thought!” OK, now we are getting somewhere: "Tomorrow then” I said aloud “I would AGAIN put my life in the hands of a neurosurgeon.” I thought. Dr. Parsa agreed, but told us to think it over and let him know by the next morning by 7am, and took his leave. However, within moments after he left the room, we all agreed on the very next day for surgery. I was thus scheduled as the first non-emergency case of the day, typically after 4-5pm. I got in around 7:30pm on 2/17, and so my second tumor was removed at UCSF Medical Center in a two-and-a-half hour operation, which I write about (well not the surgery, which (I am sorry to say I) I do not recall at all, but the stay in the ICU.
After the operation, I should have stayed at least a week longer at UCSF. The nursing staff at UCSF is by far superior to Columbia University: The UCSF nurses were not only better, better trained, but also more compassionate.
However, I insisted on getting out of UCSF – they really wanted to keep me there, what a fool! Thus, I prematurely went into the inpatient rehab clinic (at the Good Samaritan Rehabilitation Facilities in Los Gatos), a living nightmare if I have ever seen one, and probably the worst thing that ever happened to me emotionally. Most of the patients are elderly (let’s face it: they are old) stroke patients, and many cannot talk. It was eerie. On top of that, for the first two days (and occasionally later on, too) I had constant mental freezes, where I could follow everything that was going on around me with the movement of my eyes and hearing everything, but I could NOT talk or even respond in any way.
In my state, in the beginning I was really confused (I could NOT recognize my father, even though he was sitting right in front of me), the staff was initially clueless on how to handle me, and I was emotionally a bit unstable. The therapists were quite a bit better, but I wanted/needed to get out of there.
I finally got out of this living hell on March 5 (and I cannot thank Jacob, Deb, and Hege enough to support me and my parents).
Now, I am at home! I have a full time nurse/helper during the night and a driver during the day to help me get around.
Oh, yes driving. The DMV yanks your driver’s license, once you had a major brain injury or operation. Initially, I insisted on driving myself, but that was unrealistic, so now I will get that reinstated after the chemotherapy, drivers’ education course, etc., both to relearn driving (or make sure I can still drive), and for reinstatement of your license, you need letters from your dAs compared to the first tumor, this time things are different though:
1. The second tumor and operation is ALWAYS more difficult and more difficult to deal with, because more brain tissue is being damaged.
2. I am enrolled in a phase II clinic trial using a heat-shock HSPPC-96 vaccine with the chemotherapy drug temozolomide (the chemotherapy drug of choice for GBMs), which I am currently taking. The HSPPC-96 vaccine is individualized, and based on my OWN cancer cells. The resulting vaccine is then injected into me using a well-defined protocol.
As a prerequisite, I need to complete a course of chemo (every DAY) and radiation (Mo-Fri) for 6 weeks. Radiation treatment is 2 Gy every session using 3-6MeV hard x-rays at Stanford. The Stanford radiation treatment is supervised and directed by Dr. Iris Gibbs, and as you would expect from Stanford, the technical staff is superb, and treats me as if this the best stuff for you (given the circumstances, it probably is), and as if you are being fed caviar. My body takes both treatments very well, with no nausea and no fatigue, so far :-)
I’m scheduled to go on “medical break” on 4/24 for approximately two weeks. In the meantime, I continue with physical & occupational therapies, and throughout I will continue to work with my TCM (Traditional Chinese Medicine) practitioner (acupuncture and herbs) Fred Dong.
I am improving visibly day by day. Talking about improving: a week ago, I would hardly manage to walk a few hundred feet in Cuesta Park on paved surface (and managed to almost fall on a children’s playground (it was extremely soft composite, were it not for Jacob an Deb). However, on Saturday 4/3 (and to the sheer joy and amazement of my parents), I managed to walk the full 1-mile loop on Henry Cowell Redwoods State Park, among the 250 feet tall ancient redwoods.
For the next few weeks, a typical day will look like this: Either physical, or occupational therapy in the morning, then radiation treatment at Stanford (including driving time it takes about 1.5 hours, and about 5-7 minutes for the actual treatment). In addition, I visit my TCM three times a week for two-hour session (either at 9AM in the morning or after the radiation treatment) plus a chemotherapy capsule with a tall glass water on an empty stomach just before going to bed in the evening. Once a week I see my family doctor Shane Dormandy. I am in constant contact with Dr. Rose Lai, my neuro-oncologist from Columbia. She has been instrumental in my treatment, from handling of all the medications (a not too long list), to informing us about the vaccine trial. I consider her the core of my medical team; our family would all not know what to do without her.
There is a certain monotony for the next three weeks. The vaccine trial calendar has me receive my first dose of the vaccine either May 3, May 10 or and May 17.
My parents are taking care of everything from scheduling doctors, therapists, to arranging night nurses, to handling my medications. Besides my parents and my close friends, I thus rely on my medical team, which includes Drs. Andrew Parsa, Rose Lai, Jennifer Clarke (UCSF), Iris Gibbs and her resident Michael Spioto (radiation oncology at Stanford Univ.), and Shane Dormandy, as well as my TCM doctor Fred Dong.
The experimental vaccine trial is one of small statistics; one has to wonder what kind of statistic is being used – Bayesian as it should be and as I will challenge anyone, who thinks otherwise (as I always do). As Dr. Parsa writes about the preliminary data on his website: “we have generated some remarkable anecdotal efficacy data as well as compelling immunomonitoring data.”
The vaccine manufacturer (Antigenics Inc.) is a bit more specific in their Fourth Quarter statement: “The first 20 Phase 2 recurrent glioma patients treated with Oncophage (the brand name for the heat-shock HSPPC-96 vaccine) showed a median survival of 10.1 months, with at least six patients (30 percent) surviving 12 months or longer. These early clinical data appear to compare favorably with the long-established historical median survival of 6.5 months, and with the recently reported median survival of 9.2 months with Avastin (bevacizumab) in patients with recurrent high-grade glioma. Further data updates are anticipated in the first half of 2010.”
I want to take this opportunity (this being both Easter and Passover) to thank a few people for their unconditional support here, and others. I will thank later for their emails and prayers, and their show of understanding, and love.
First of all, I want to thank my parents as I must, because this has been as much, if not more of an ordeal for them, and they are not the youngest anymore, plus for some time I was not myself, and as others will attest it was almost impossible to handle me.
I especially want to thank two of my friends: Jacob Cohen for being there any time I need him, and Deb Feng: thank you too, and for taking care of my car.
Khalid and Hege: you are the most wonderful couple. You are made for each other. Hege, please know that your warmth kept me sane during the days at the Good Samaritan Hospital, and your calming warm words allowed me to cross the threshold to our house. I can’t thank you enough for that.
I was in much worse shape than I thought. I only learned later, had I not left Hawaii, the doctors at UCSF told me that I would either be heavily handicapped now or even dead.
In any case, the cancer was within days of killing me. My parents were adamant to get me to UCSF, even though I was opposed to the whole idea of leaving paradise.
My parents and I took an emergency flight to SFO on 2/15. They checked me into the ER at UCSF, and the medical staff immediately went about treating me for my cancer.
UCSF extensive medical testing (including MRI study at UCSF) the radiologist determined that while I had correctly determined that my alternative treatments finally reversed tumor volume growth, I had missed the linear growth in one critical direction, and the tumor was growing into my brain!
This verified my parent’ s worst fears, and we had to decide how to proceed on the 16th.
Thus, late on the afternoon of 2/16, our family and my friends Deb Feng & Jacob Cohen (both are from Ames) transformed my room into a “war room”, and Jacob walked us through the simple concepts of a war:
This tumor needs to be eliminated. We cannot have ANY surviving tumor cells in my brain. Therefore, I need to fight with everything I got, with overwhelming force, meaning all tools must be considered, including surgery (that was a given, considering my condition), chemo, radiation, clinical trials, immune boosters, alternative treatments, diets, etc. I have to this battle-by-battle, and attack the tumor relentlessly.
- The first battle was the resection of the tumor.
- The second battle was going to be chemotherapy and radiation (undergoing right now).
- The third battle would use a new experimental vaccine made from the patient’s own tumor.
- I will fight on as long as it takes, and whatever battles I have to fight. I do NOT want a recurrence of the tumor.
While my parents had met with Dr Parsa (the neurosurgeon, a man of very few words even with his friends an colleagues) before, I met him for the first time late in the afternoon on 2/16. Within a few minutes, not only had I decided to accept chemotherapy and radiation as part as of my treatment, but also decided on a date for the surgery and decided to be part of his experimental vaccine trial.
So the dialog between the two of us went something like this:
"I am Dr. Andrew Parsa, and I understand you want your tumor removed."
"That is correct."
"I also heard you are interested in our experimental trial?"
"Correct."
"So you are willing to undergo chemo and radiation treatment in order to receive the experimental vaccine trial."
"Yes, correct."
“So let me get this all straight: you will undergo surgery, then you are willing to undergo radiation and chemotherapy to be enrolled in the experimental vaccine trial?”
“Yes” I said with a certain eagerness.
"So now we need to find a date for your surgery."
“Yes indeed, and in a hurry,” I thought aloud.
My mother told me later how surprised she was, because I was so eager to go ahead with the surgery, no hesitation this time compared to the days of agonizing in CUMC in NYC.
We had on the wall a letter-sized calendar with the dates of 2/17 to 2/24 clearly marked off. 2/17 was a Wednesday, as was 2/24.
It turns out that the days Dr. Parsa does not operate on are Tuesdays and Thursdays, so that left 2/17, 2/19 (Friday), 2/22 and 2/24. He went on to helpfully explain that tumor cells "march out of the boundary of the tumor at a certain rate (whatever that rate may be), and they do this all the time", and postponing any further operation “would just make it worse, as more tumor cells migrate into the healthy brain tissue”. So forget about next week. So my first thought was: “Friday? Why wait, no reason, besides two more agonizing days to rethink my decision, plus the image of marching cancerous glio cells really is not a nice thought!” OK, now we are getting somewhere: "Tomorrow then” I said aloud “I would AGAIN put my life in the hands of a neurosurgeon.” I thought. Dr. Parsa agreed, but told us to think it over and let him know by the next morning by 7am, and took his leave. However, within moments after he left the room, we all agreed on the very next day for surgery. I was thus scheduled as the first non-emergency case of the day, typically after 4-5pm. I got in around 7:30pm on 2/17, and so my second tumor was removed at UCSF Medical Center in a two-and-a-half hour operation, which I write about (well not the surgery, which (I am sorry to say I) I do not recall at all, but the stay in the ICU.
After the operation, I should have stayed at least a week longer at UCSF. The nursing staff at UCSF is by far superior to Columbia University: The UCSF nurses were not only better, better trained, but also more compassionate.
However, I insisted on getting out of UCSF – they really wanted to keep me there, what a fool! Thus, I prematurely went into the inpatient rehab clinic (at the Good Samaritan Rehabilitation Facilities in Los Gatos), a living nightmare if I have ever seen one, and probably the worst thing that ever happened to me emotionally. Most of the patients are elderly (let’s face it: they are old) stroke patients, and many cannot talk. It was eerie. On top of that, for the first two days (and occasionally later on, too) I had constant mental freezes, where I could follow everything that was going on around me with the movement of my eyes and hearing everything, but I could NOT talk or even respond in any way.
In my state, in the beginning I was really confused (I could NOT recognize my father, even though he was sitting right in front of me), the staff was initially clueless on how to handle me, and I was emotionally a bit unstable. The therapists were quite a bit better, but I wanted/needed to get out of there.
I finally got out of this living hell on March 5 (and I cannot thank Jacob, Deb, and Hege enough to support me and my parents).
Now, I am at home! I have a full time nurse/helper during the night and a driver during the day to help me get around.
Oh, yes driving. The DMV yanks your driver’s license, once you had a major brain injury or operation. Initially, I insisted on driving myself, but that was unrealistic, so now I will get that reinstated after the chemotherapy, drivers’ education course, etc., both to relearn driving (or make sure I can still drive), and for reinstatement of your license, you need letters from your dAs compared to the first tumor, this time things are different though:
1. The second tumor and operation is ALWAYS more difficult and more difficult to deal with, because more brain tissue is being damaged.
2. I am enrolled in a phase II clinic trial using a heat-shock HSPPC-96 vaccine with the chemotherapy drug temozolomide (the chemotherapy drug of choice for GBMs), which I am currently taking. The HSPPC-96 vaccine is individualized, and based on my OWN cancer cells. The resulting vaccine is then injected into me using a well-defined protocol.
As a prerequisite, I need to complete a course of chemo (every DAY) and radiation (Mo-Fri) for 6 weeks. Radiation treatment is 2 Gy every session using 3-6MeV hard x-rays at Stanford. The Stanford radiation treatment is supervised and directed by Dr. Iris Gibbs, and as you would expect from Stanford, the technical staff is superb, and treats me as if this the best stuff for you (given the circumstances, it probably is), and as if you are being fed caviar. My body takes both treatments very well, with no nausea and no fatigue, so far :-)
I’m scheduled to go on “medical break” on 4/24 for approximately two weeks. In the meantime, I continue with physical & occupational therapies, and throughout I will continue to work with my TCM (Traditional Chinese Medicine) practitioner (acupuncture and herbs) Fred Dong.
I am improving visibly day by day. Talking about improving: a week ago, I would hardly manage to walk a few hundred feet in Cuesta Park on paved surface (and managed to almost fall on a children’s playground (it was extremely soft composite, were it not for Jacob an Deb). However, on Saturday 4/3 (and to the sheer joy and amazement of my parents), I managed to walk the full 1-mile loop on Henry Cowell Redwoods State Park, among the 250 feet tall ancient redwoods.
For the next few weeks, a typical day will look like this: Either physical, or occupational therapy in the morning, then radiation treatment at Stanford (including driving time it takes about 1.5 hours, and about 5-7 minutes for the actual treatment). In addition, I visit my TCM three times a week for two-hour session (either at 9AM in the morning or after the radiation treatment) plus a chemotherapy capsule with a tall glass water on an empty stomach just before going to bed in the evening. Once a week I see my family doctor Shane Dormandy. I am in constant contact with Dr. Rose Lai, my neuro-oncologist from Columbia. She has been instrumental in my treatment, from handling of all the medications (a not too long list), to informing us about the vaccine trial. I consider her the core of my medical team; our family would all not know what to do without her.
There is a certain monotony for the next three weeks. The vaccine trial calendar has me receive my first dose of the vaccine either May 3, May 10 or and May 17.
My parents are taking care of everything from scheduling doctors, therapists, to arranging night nurses, to handling my medications. Besides my parents and my close friends, I thus rely on my medical team, which includes Drs. Andrew Parsa, Rose Lai, Jennifer Clarke (UCSF), Iris Gibbs and her resident Michael Spioto (radiation oncology at Stanford Univ.), and Shane Dormandy, as well as my TCM doctor Fred Dong.
The experimental vaccine trial is one of small statistics; one has to wonder what kind of statistic is being used – Bayesian as it should be and as I will challenge anyone, who thinks otherwise (as I always do). As Dr. Parsa writes about the preliminary data on his website: “we have generated some remarkable anecdotal efficacy data as well as compelling immunomonitoring data.”
The vaccine manufacturer (Antigenics Inc.) is a bit more specific in their Fourth Quarter statement: “The first 20 Phase 2 recurrent glioma patients treated with Oncophage (the brand name for the heat-shock HSPPC-96 vaccine) showed a median survival of 10.1 months, with at least six patients (30 percent) surviving 12 months or longer. These early clinical data appear to compare favorably with the long-established historical median survival of 6.5 months, and with the recently reported median survival of 9.2 months with Avastin (bevacizumab) in patients with recurrent high-grade glioma. Further data updates are anticipated in the first half of 2010.”
I want to take this opportunity (this being both Easter and Passover) to thank a few people for their unconditional support here, and others. I will thank later for their emails and prayers, and their show of understanding, and love.
First of all, I want to thank my parents as I must, because this has been as much, if not more of an ordeal for them, and they are not the youngest anymore, plus for some time I was not myself, and as others will attest it was almost impossible to handle me.
I especially want to thank two of my friends: Jacob Cohen for being there any time I need him, and Deb Feng: thank you too, and for taking care of my car.
Khalid and Hege: you are the most wonderful couple. You are made for each other. Hege, please know that your warmth kept me sane during the days at the Good Samaritan Hospital, and your calming warm words allowed me to cross the threshold to our house. I can’t thank you enough for that.
Posts
Nice article, thanks for the information.
ReplyDelete