We are a bit behind with the updates.
The meeting with Dr. Irwin went well. The meeting started with him saying "The Hodgkin's is still there." He apologized for the week delay, but elaborated on what happened that week, with the difficulties in getting Stanford to commit to a treatment bed.
We immediately (of course) threw the study by NorthWestern University at him (figuratively, not literally). He recognized the TLI method, to his credit. His comment was that other centers don't seem to be going to the TLI method, despite the high success rate, and left it to us to draw our own conclusions as to why. It was not until after the meeting that I realized that the study had only been published in 2007, and phase 3 of the trial was not done yet (in fact I do not know if it is even underway yet) so the method, if it ends up being adopted by others, is still brand new. But - this turns out to be a question to be answered by Stanford.
The overall plan is that Austin will immediately start a series of high dose chemo sessions, each about 4 days long. Each 4 day session he will be an inpatient at Alta Bates Summit Medical Center (not "Sutter" as Austin said earlier, though the hospital is part of Sutter Health Co.) Dr. Irwin reports that the chemo inpatient facilities are dedicated ones with long term nurses who have very extensive experience. On the other hand, Dr. Irwin is about to go on vacation. Two weeks. We were slightly disappointed with that. He has an associate ready to step in if needed, and a nurse Becky who seems to be an asset.
Each 4 day chemo session in the hospital will be followed by a recovery time at home of about 3 weeks, unless Austin is recovering faster than average, in which case it could be as little as 2 weeks. Austin prefers high intensity chemo at the fastest practical rate, an understandable view considering that the tumor began recovering from the Stanford V after only a few weeks.
There will be at least 2 sessions, followed by another scan to measure the size of the tumor mass. If after 2 sessions it is greatly reduced (fairly likely), or gone altogether (possible, not too likely but the best possible outcome) these chemo sessions will stop and he will transfer to Stanford for the Ultra-high-dose chemotherapy, followed by the hematopoietic stem cell transplant, and then the radiation, requiring several weeks of treatment including 4 weeks solid in the hospital. If the mass is moderately reduced after 2 sessions (likely) or slightly reduced (less likely) instead of going to Stanford he will have one or (probably) two more ICE chemo treatments, with the aim of getting the maximum physical reduction in size. If there is little reduction (possible but not too likely) or actual growth (quite unlikely, but the worst case) treatment may be reevaluated with a change in chemical agents, etc.
A lot depends on the meeting with the Stanford doctor on August 8th. We still have the option of taking the ICE treatments at Alta Bates Summit and then going directly to NWU for the integrated TLI/HSCT phase. It is Austin's and my belief that bulky tumor patients seem to do best when their radiation happens as early as possible in the HSCT treatment. Irwin is not certain of how Stanford will do this, but he implies that Stanford is not going to be too flexible in embracing treatment styles advocated by outside institutions. Is that because of bias or because their treatment is clearly superior? We will have to make that judgement once we have the facts.
Chemotherapy works by damaging cancer cells. When they try to fix themselves, the cancer cells can't do it (they are genetically abnormal) and they explode. The body's cells find the pieces of the exploded cells and get the scent, and not only go out to clean up the mess they left behind but they often kill some other nearby cells which smell the same.
It is like throwing meat at your enemy in the presence of hungry wolves. Your enemy is going to be in trouble! Hodgkin's disease has the blessing that its cells are quite vulnerable to a variety of chemo agents. Hodgkin's cells, if they are exposed to enough chemo, will die, without fail. The only variable is how much chemo the patient can tolerate. Austin's first treatment was at a fairly low level. His tumor did respond, but rather slowly. (Bulky tumors are thought to have an interior environment which adds a little shielding effect to the
tumor cells so they shrink slower.) He was on the borderline between a "PR" (partial remission, now usually called Partial Response) and a "SD" (stable disease, static disease, meaning that the disease shrank some or was stopped from growing.) He is now on the high dose chemo - it is reasonable to expect that his response will also be increased.
Reasonable, but again, not certain. After these ICE steps, his final chemo sessions will be ultra-high doses. These are the doses which are one of the miracles of modern medicine, because they can cure so many cancers - often even the killer disease Acute myeloid leukemia. They were once unusable because they would kill all the patients and it is no victory to cure the disease but have the patient not survive the treatment. But the hematopoietic stem cell transplant procedure restores the destroyed blood system and "rescues" the patient from the effects of the ultra-high dose chemo. There is no such rescue for the cancer cells, though, and therefore they stay dead. The patient receives a complete remission, gets consolidative radiation treatments to forestall any relapse, and goes home for a long recovery period, cured.
This is what we intend, hope, and expect for Austin.
Thursday, July 31, 2008
[7-31-08] Evening Report
[7:29am]
My Liz just came over and kept me company. What a wonderful person she is (true, the McDonalds helped :P). Anyhow, I'm just constantly amazed with all the support I've received from you all -- it really makes me feel that I'm loved and not alone. So here's to you all!
I'm just about to start the second part of my chemo. Hopefully, this'll go better than the first. Now that the nausea is gone, I just find myself sleepy -- maybe a side effect of anti-nausea meds? Or because my red blood count is below nominal?
You know, in retrospect, the chaplain visiting kind of spooked me a bit. I mean, if you break your leg in the hospital, do you get a chaplain? They are there to address the "spiritual needs" of the patients. If you're obviously going to live, you aren't in a spiritual crisis. So, why do I get a chaplain? Spooky.
[Watching: Hancock]
My Liz just came over and kept me company. What a wonderful person she is (true, the McDonalds helped :P). Anyhow, I'm just constantly amazed with all the support I've received from you all -- it really makes me feel that I'm loved and not alone. So here's to you all!
I'm just about to start the second part of my chemo. Hopefully, this'll go better than the first. Now that the nausea is gone, I just find myself sleepy -- maybe a side effect of anti-nausea meds? Or because my red blood count is below nominal?
You know, in retrospect, the chaplain visiting kind of spooked me a bit. I mean, if you break your leg in the hospital, do you get a chaplain? They are there to address the "spiritual needs" of the patients. If you're obviously going to live, you aren't in a spiritual crisis. So, why do I get a chaplain? Spooky.
[Watching: Hancock]
[7-31-08] Delusional Optimism
[3:54am]
I'd like to demonstrate a little known strategy known as "Delusional Optimism." That, combined with several other, uh, peculiar aspects of my personality enable an unprecedented amount of satisfaction from the most terrible of things... and the more crazy you are, the better it works.
For example, consider a patient who just experienced some nausea due to the first day of treatment on a new chemotherapy regimen. A sane person might say, "this sucks." Rightly so. A delusional optimist, however, will be pleased because he feels that the chemotherapy is "working well" if he notices unpleasant side effects (delusional), even if countless literature indicates that this absolutely not true . The optimist then kicks in, and because of the delusion, begins to feel that "everything will turn out ok" because of all this. It's a very effective way stroll through many of life's difficulties -- I'm thinking of Bullwinkle's famed innocent ignorance, here (which is a similar, albeit different strategy).
Ok, we now return to your regularly scheduled program...
Woohoo, I'm feeling some nausea!!
I just had some ativan to combat the nausea, and it will help me combat this darn insomnia. I've only had three hours sleep: I keep having nightmares where I read a study which clearly indicates that the doses and scheduling of my ICE treatment were clearly ineffectual. Doctors are unavailable on the phone or email, nurses insist on continuing with set treatment... stuff like that.
[8:00am]
Just got my CT scan. They left me in a waiting room for a bit, so I had time to practice my freestyle wheelchair moves. It takes a lot of effort to move one of those around! If I didn't have the ICE-machine on the back, I would have tried some wheelies.
I had to drink this odd contrast material so that the CT machine could see my organs and whatnot, then the proceed to inject me with the IV dye -- my favorite part! Toasty :P
I know I'm not supposed to shower with an accessed port, but to hell with that! That's gross! I'm trying to smuggle some soap from the hand cleaner, and use a spare blanket for a towel :P
[3:10]
Just started chemo again, and at terrible timing. I took a nap around 2:00pm; well, when I seem to wake up, I have some moderate nausea. The key is to move as little as possible when you call for the nurse. Strange how, nausea with the Stanford V was way more mild and way more predictable. This type disappears, ebbs and flows, or goes from mild to something tougher if you make the wrong movement. But I'm confident the anti-nausea meds will do the trick: Ativan Zolfran, and the killer Emmend. I think they've just been giving me ativan until now.
Anyhow, bad timing I think. Nausea so close to *more* chemo, and just as I'm recovering, the chaplain walks in. I'm prepared for all sorts of religious stuff, but he just calmly professes "spiritual comfort" when I state my, uh, "nondenominational and individualistic spiritualism." I tell him that I basically do not want to "go there" at this point, maybe if things get more pessimistic, but I invite him to sit down and have a chat about anything in particular (For some reason, I'm starving for conversation around here. My nurse Alicia is a gem). So, I basically talk about my past and my current situation... from diagnosis to where I'll be in a few months. Nice guy. If only chaplains were ministers, we'd have way more mello religion.
[4:29pm]
Barbara's coming, and I think Liz too! Yay, a visit! I didn't realize how social I'd find myself in here.
I'd like to demonstrate a little known strategy known as "Delusional Optimism." That, combined with several other, uh, peculiar aspects of my personality enable an unprecedented amount of satisfaction from the most terrible of things... and the more crazy you are, the better it works.
For example, consider a patient who just experienced some nausea due to the first day of treatment on a new chemotherapy regimen. A sane person might say, "this sucks." Rightly so. A delusional optimist, however, will be pleased because he feels that the chemotherapy is "working well" if he notices unpleasant side effects (delusional), even if countless literature indicates that this absolutely not true . The optimist then kicks in, and because of the delusion, begins to feel that "everything will turn out ok" because of all this. It's a very effective way stroll through many of life's difficulties -- I'm thinking of Bullwinkle's famed innocent ignorance, here (which is a similar, albeit different strategy).
Ok, we now return to your regularly scheduled program...
Woohoo, I'm feeling some nausea!!
I just had some ativan to combat the nausea, and it will help me combat this darn insomnia. I've only had three hours sleep: I keep having nightmares where I read a study which clearly indicates that the doses and scheduling of my ICE treatment were clearly ineffectual. Doctors are unavailable on the phone or email, nurses insist on continuing with set treatment... stuff like that.
[8:00am]
Just got my CT scan. They left me in a waiting room for a bit, so I had time to practice my freestyle wheelchair moves. It takes a lot of effort to move one of those around! If I didn't have the ICE-machine on the back, I would have tried some wheelies.
I had to drink this odd contrast material so that the CT machine could see my organs and whatnot, then the proceed to inject me with the IV dye -- my favorite part! Toasty :P
I know I'm not supposed to shower with an accessed port, but to hell with that! That's gross! I'm trying to smuggle some soap from the hand cleaner, and use a spare blanket for a towel :P
[3:10]
Just started chemo again, and at terrible timing. I took a nap around 2:00pm; well, when I seem to wake up, I have some moderate nausea. The key is to move as little as possible when you call for the nurse. Strange how, nausea with the Stanford V was way more mild and way more predictable. This type disappears, ebbs and flows, or goes from mild to something tougher if you make the wrong movement. But I'm confident the anti-nausea meds will do the trick: Ativan Zolfran, and the killer Emmend. I think they've just been giving me ativan until now.
Anyhow, bad timing I think. Nausea so close to *more* chemo, and just as I'm recovering, the chaplain walks in. I'm prepared for all sorts of religious stuff, but he just calmly professes "spiritual comfort" when I state my, uh, "nondenominational and individualistic spiritualism." I tell him that I basically do not want to "go there" at this point, maybe if things get more pessimistic, but I invite him to sit down and have a chat about anything in particular (For some reason, I'm starving for conversation around here. My nurse Alicia is a gem). So, I basically talk about my past and my current situation... from diagnosis to where I'll be in a few months. Nice guy. If only chaplains were ministers, we'd have way more mello religion.
[4:29pm]
Barbara's coming, and I think Liz too! Yay, a visit! I didn't realize how social I'd find myself in here.
Wednesday, July 30, 2008
[7-30-08] Evening Report
[11:36pm]
I just finished the chemo and whatnot -- this'll be a piece of cake. No nausea yet; just the familiar "I just had chemo" sensation. It could be the placebo effect, but it feels more like my body *should* be feeling bad, but I've been given great meds to combat that. Kinda like pouring a glass of hot water into a glass of cold water: the two cancel out, but the glass itself remains oddly cold for a short period of time.
The bad news is that I am not getting the maximum dose of ifosfamide (of the mustard family). My order says "maximum dose" of 1000mg/m2. Calculating my surface area, my nurse tells me that I am 2.2m2. This means that I should get a dose of 2200mg; my actual dose is 1750mg. From what I gather, my large size translates into a dose of ifosfamide that is well over safe limits in a short period of time (4 days). Accordingly, my doctor lowered that dose so that I will receive 7000mg in four days. Still, I like large doses of chemo.
On a related topic, I've been drinking massive amounts of water. The frequency of bladder problems is quite common on this drug, so I'm doing the "better safe than sorry" approach.
I just finished the chemo and whatnot -- this'll be a piece of cake. No nausea yet; just the familiar "I just had chemo" sensation. It could be the placebo effect, but it feels more like my body *should* be feeling bad, but I've been given great meds to combat that. Kinda like pouring a glass of hot water into a glass of cold water: the two cancel out, but the glass itself remains oddly cold for a short period of time.
The bad news is that I am not getting the maximum dose of ifosfamide (of the mustard family). My order says "maximum dose" of 1000mg/m2. Calculating my surface area, my nurse tells me that I am 2.2m2. This means that I should get a dose of 2200mg; my actual dose is 1750mg. From what I gather, my large size translates into a dose of ifosfamide that is well over safe limits in a short period of time (4 days). Accordingly, my doctor lowered that dose so that I will receive 7000mg in four days. Still, I like large doses of chemo.
On a related topic, I've been drinking massive amounts of water. The frequency of bladder problems is quite common on this drug, so I'm doing the "better safe than sorry" approach.
[7-30-08] ICE, ICE, Baby!
I still need to outline the current plan.
There will be 2 to 4 cycles of ICE treatment, each time requiring 4 days of hospitalization. Based on how I handle the first cycle, the interval between cycles will be determined: 2 weeks, or 3 weeks. After two cycles, my progress will be determined with a pet-CT scan. If scans are clean, then I will start the BMT at Stanford. Otherwise (provided that there is at least some progress), ICE treatment will continue for 2 more cycles. When it is time for the Stanford BMT, I'll be in-patient for about a month (due to whopping dose of chemo and no white blood cells). Then I'm cured, and I can proceed to celebrate.
[1:02pm]
Today is Christmas. In that I was really looking forward to getting started, and moving forward. I mean, this is basically the first day of my new life, you know? How things go today will indicate how things will be for the next few months. That's a pretty big deal.
Will I handle the chemo well? Will I have a good time in the hospital? Will it be like a little vacation? I wonder all of these things. Today, I will be able to add the first data point. From that, I can begin to extrapolate all sorts of crazy predictions... but, before I can do that, I need at lease one data point. That is today.
So far, it's been pretty anti-climactic. In a way, I expected all sorts of rush and activity when I arrived, but it quickly got pretty calm.
Ooh, the ICE-machine is here..
[4:42pm]
Just got through with the MUGA (pronounced: "muh-ga") scan. Apparently, they need to make sure my heart can handle the chemo. It's pretty much the same as the MRI, CT scan, and pet-CT scan, in that you enter some white tunnel-type thing and hold your arms over your head until they turn blue. The machine here at Sutter is way cooler than any I have seen -- there's this beautiful back-lit photograph of several cherry blossom trees in bloom. Very nice.
I have a CT scan and some sort of lung test remaining. However, the doctor told me that we are proceeding with chemo despite the fact that I still have tests remaining -- better to not delay the scheduled chemo. Right now I'm on IV hydration in preparation for the chemo. Apparently, I need to have lots of fluids for ICE: there's the threat of hemorrhagic cystitis with symptoms mimicking that of a urinary tract infection. Bleeing Pud. Eww
Anyhow, ifosfamide ETA: 2 hours. I missed chemo :P
[6:00pm]
Yahoooo! I'm SO hungry, but Liz is coming with TACO BELL!!! I am so stoked right now. Mmmmmm fooooood. It is christmas!
There will be 2 to 4 cycles of ICE treatment, each time requiring 4 days of hospitalization. Based on how I handle the first cycle, the interval between cycles will be determined: 2 weeks, or 3 weeks. After two cycles, my progress will be determined with a pet-CT scan. If scans are clean, then I will start the BMT at Stanford. Otherwise (provided that there is at least some progress), ICE treatment will continue for 2 more cycles. When it is time for the Stanford BMT, I'll be in-patient for about a month (due to whopping dose of chemo and no white blood cells). Then I'm cured, and I can proceed to celebrate.
[1:02pm]
Today is Christmas. In that I was really looking forward to getting started, and moving forward. I mean, this is basically the first day of my new life, you know? How things go today will indicate how things will be for the next few months. That's a pretty big deal.
Will I handle the chemo well? Will I have a good time in the hospital? Will it be like a little vacation? I wonder all of these things. Today, I will be able to add the first data point. From that, I can begin to extrapolate all sorts of crazy predictions... but, before I can do that, I need at lease one data point. That is today.
So far, it's been pretty anti-climactic. In a way, I expected all sorts of rush and activity when I arrived, but it quickly got pretty calm.
Ooh, the ICE-machine is here..
[4:42pm]
Just got through with the MUGA (pronounced: "muh-ga") scan. Apparently, they need to make sure my heart can handle the chemo. It's pretty much the same as the MRI, CT scan, and pet-CT scan, in that you enter some white tunnel-type thing and hold your arms over your head until they turn blue. The machine here at Sutter is way cooler than any I have seen -- there's this beautiful back-lit photograph of several cherry blossom trees in bloom. Very nice.
I have a CT scan and some sort of lung test remaining. However, the doctor told me that we are proceeding with chemo despite the fact that I still have tests remaining -- better to not delay the scheduled chemo. Right now I'm on IV hydration in preparation for the chemo. Apparently, I need to have lots of fluids for ICE: there's the threat of hemorrhagic cystitis with symptoms mimicking that of a urinary tract infection. Bleeing Pud. Eww
Anyhow, ifosfamide ETA: 2 hours. I missed chemo :P
[6:00pm]
Yahoooo! I'm SO hungry, but Liz is coming with TACO BELL!!! I am so stoked right now. Mmmmmm fooooood. It is christmas!
Tuesday, July 29, 2008
[7-29-08] The Big Plan
[8:51am]
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
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