Today I finished treatment number 17 of 30... it's downhill from here!
I've been brief in describing treatments to date, mostly because actually undergoing treatment is relatively simple, especially compared with the past few months of doctor visits, tumor research and treatment decision making. But my treatments are no small miracles of science and are really quite story, so fasten your seatbelt... this post will be an exclusive expose on my radiation and chemotherapy.
The first most interesting thing, in the words of Sally Jay Gorce, is that radiation and chemotherapy treatments are managed by two different groups at the hospital. Although they compliment one another in treating my tumor, they are really two different animals. Let's meet them...
How is it going?
Good question! The success of proton therapy can't be measured until at least a month after treatment ends. I've described this to some friends as two cartoon characters scuffling in a cloud of dust... once the dust settles, the docs will take a look at how my tumor responded to treatment. Because my tumor is slow growing, it is likely to be slow to react to radiation... the benefits of radiation may take as many as six months to appear. That gives me lots of time to plan a celebration for good news to come. At that point, the tumor is zapped, and I will be monitored with MRIs periodically to see how things are going.
How does it work?
Sam manages the most beautiful produce section in all of Portland, Maine, and is as generous a host as one could hope to visit.
The Proton Animal
How does the proton machine work?
Proton therapy applies positively charged subatomic particles - protons - to my tumor. This damages the DNA of cancer cells - ideally killing them and preventing them from reproducing. The idea of generating these protons for treatment came from Robert Wilson, across the river at the Harvard Cyclotron Laboratory in the 1960s. The first treatments used particle accelerators at the physics research labs, and Harvard was the first to do it.
How does the proton machine work?
Proton therapy applies positively charged subatomic particles - protons - to my tumor. This damages the DNA of cancer cells - ideally killing them and preventing them from reproducing. The idea of generating these protons for treatment came from Robert Wilson, across the river at the Harvard Cyclotron Laboratory in the 1960s. The first treatments used particle accelerators at the physics research labs, and Harvard was the first to do it.
Eventually, Massachusetts General Hospital built their own "cyclotron" to produce protons. A cyclotron is a 220 ton device that spins a powerful magnet to remove protons from hydrogen atoms. The cyclotron is the bowling-ball-looking thing at the left of the below image. Once the protons are split from the hydrogen atom, they pass through magnets and modulators to yours truly in Gantry 2, arriving at a speed of 400 million mph - 60% of the speed of light. A final modulator controls the depth of the protons so they they treat as many tumor cells (and as few healthy cells) as possible.


This, in a nutshell, is the whole reason for being here in Boston. There are 27 proton machines in the world, and nine in the United States (there were only 2 in the United States in 2004). Of the ~67,000 people ever treated with protons around the world, Mass General has treated 8900 of them - far more than any other place.
Experience is everything. The map below gives you an idea of all the steps involved in planning my treatment... complicated stuff that involves neuroanatomists, physicists, machinists, and engineers. Dr. Bill Wells first tipped me off to the potential benefits of proton therapy, and I'm forever grateful to him for that - it's the bee's knees of radiation treatment.
What does it feel like?
Not much. My neck feels a little warm sometimes... like I applied sun tan lotion everywhere but there and was on the beach all day. Other than that, it's hard to tell. One of the benefits of proton radiation is that, unlike photon radiation (which is much more common), protons deliver the radiation dose to a more well-defined area of my head, and will do less damage to healthy tissue. Sounds good to me! The graph below gives you an idea...
How is it going?
Good question! The success of proton therapy can't be measured until at least a month after treatment ends. I've described this to some friends as two cartoon characters scuffling in a cloud of dust... once the dust settles, the docs will take a look at how my tumor responded to treatment. Because my tumor is slow growing, it is likely to be slow to react to radiation... the benefits of radiation may take as many as six months to appear. That gives me lots of time to plan a celebration for good news to come. At that point, the tumor is zapped, and I will be monitored with MRIs periodically to see how things are going.
The Chemotherapy Animal
How does chemotherapy work?
How does chemotherapy work?
My chemo comes in the form of a pill - temozolomide, also known by it's US brand name Temodar. I take Temodar once a day, an hour before radiation, because in addition to working directly on my tumor, it's also a radiosensitizer that makes protons more effective. Temodar is a relatively new form of chemo that has been used to treat brain tumors and skin cancer since 2000. Although it does some serious work by interfering with DNA replication in fast growing cells like my tumor (as well as cells in my bone marrow, digestive track and hair follicles), Temodar is also known as an easy chemo which means it has pretty minor side effects. Meet temozolomide...
How does it feel?
Okay, I guess. I am a bit fatigued from time to time - a symptom of both Temodar and radiation - and the anti-nausea pill I take to make my Temodar go down smoothly does clog up my system. Otherwise, it doesn't feel like much.
And how's chemo going?
I get my blood drawn once a week to count platelets, white blood cells and other things - and so far all of my levels are very good. I'll continue to take Temodar every day until radiation is finished. Then I get a month off before I take it one week a month for the next ten months. Piece of cake!
The Portland SAMnimal
Sarah and I took the Downeaster train to Portland this weekend to tour the city with her friend and native Mainer Sam Kayo.
How does it work?
Sam manages the most beautiful produce section in all of Portland, Maine, and is as generous a host as one could hope to visit.
Sam's produce at Rosemont Market... veggie heaven
What does it feel like?
Like good company. Sam drove us all over town, showed us his favorite places, and let me in on a secret: Maine is one of the most beautiful places on Earth. We had a scenic picnic at a very cold beach, ate at his sister's new restaurant, Petite Jacqueline, and feasted on some delicious antipasti made by Sam's mom. Portland is incredible - I've never been to Maine before. The landscape, food, buildings and people are spectacular, delicious, charming and charming. Hopefully we'll make it back up in summer sometime and swim with the seals.
Like good company. Sam drove us all over town, showed us his favorite places, and let me in on a secret: Maine is one of the most beautiful places on Earth. We had a scenic picnic at a very cold beach, ate at his sister's new restaurant, Petite Jacqueline, and feasted on some delicious antipasti made by Sam's mom. Portland is incredible - I've never been to Maine before. The landscape, food, buildings and people are spectacular, delicious, charming and charming. Hopefully we'll make it back up in summer sometime and swim with the seals.
Crossing the river to the beach...
And the view from the top...
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Plenty more to blog about in the days to come. In a flash of enthusiasm, I registered for the Twin Cities Marathon this week. I ran it last October (my first marathon) and swore it'd be my last. It's as good a time as any to show that I'm faster and stronger than ever.



2 comments:
excellent post!
The Amazing Karl,,,,Nobody's Going to Break YOUR Stride!!!
Kepp the Posts coming..
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