High Cy

According to Wikipedia: Cyclophosphamide (the generic name for Endoxan, Cytoxan, Neosar, Procytox, Revimmune), also known as cytophosphane, is a nitrogen mustard alkylating agent,[1] from the oxazophorines group.
An alkylating agent adds an alkyl group (CnH2n+1) to DNA. It attaches the alkyl group to the guanine base of DNA, at the number 7 nitrogen atom of the imidozole ring.
It is used to treat various types of cancer and some autoimmune disorders. It is a "prodrug"; it is converted in the liver to active forms that have chemotherapeutic activity.

Got up early today and hit the rowing machine for a quick 4,000 meters. Pretty lame distance, but a good idea after last night’s spectacular turkey fest at our friends, the Luikarts, in San Francisco. Off to the hospital by 10:30. And waited...
This phase is called “Cytoxan mobilization.” As we were setting up, I asked the nurse what was in store for the day, as I have already had regular Cytoxan doses as a part of my R-CHOP. After she runs the numbers, she tells me that I will be receiving about 10 times the R-CHOP dose. “It’s really a different drug at these doses.”
Great.
At 4:30, the session begins with Harry Nilson’s Jump Into The Fire playing on my ipod. This seems appropriate. Initially, the nurses administer a panoply of anti-nausea meds including Benadryl, Dekadron, Zofran. Benadryl, when administered in industrial strength doses leaves a metallic taste in my mouth. It also makes it difficult to fully form words or type accurately. I persevere, as I am not otherwise occupied.
Now that I’m suitably armed, the Cytoxan begins to flow like water.
This will continue for another 90 minutes. There may be drama, or not. To keep me occupied during my overnight stay, they have administered a drug to stimulate VERY frequent urination. It works as advertised. I am on the 30 minute sitcom schedule. This will protect my bladder from burning that the Cytoxan can cause, if it stays too long.
My venue is now more private. I am in a hospital room in the E-1 wing of the main hospital at Stanford. This is a somewhat specialized area—the transplant unit—where all in-patient transplants are performed. Super sterile conditions. Everyone wears a mask. While it can be of some interest for an overnight, this is where I will come for the transplant and spend three weeks. Probably longer than I will want to stay. The food is fine, but no wine is served with meals—or in between for that matter.
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It’s the next morning and things are fine. No particular drama, although the hospital is not the place for a good night’s sleep. The nursing staff, as usual, is excellent. Now I go home for a week or so of self-administered neupogen injections, to stimulate stem cell production in my blood stream. A note for those who are debating national health care this month: Jane went to the drug store to order the neupogen, and was presented with a tab for $12,000 for a ten-day supply. Not a problem for our BC/BS policy. Less likely so for others.

Once the mobilization and stem cell harvest are complete—hopefully by the 12th of December-we are free to go, and hope to get back to Bethesda for a week to feed the dog and let him out.
11/28/09

Goosebumps

Stanford was the last stop on our “tour” of medical institutions in March and April of this year. Almost uniformly, to that point, the reception from the hospitals was similar and terminator-like. We were interviewed by the lead research doc, complete with attending residents, a nurse or two, etc. Each explained the risks of the disease, the need for treatment either yesterday, tomorrow, or, if they were mellow, maybe in a month or so. With the exception of Dr. Windham Wilson at NIH, the message was a variation on the theme: “come with me if you want to live.”

Our final stop, at the insistence of our daughter, Molly, was The Farm, to check out their nascent vaccine program for MCL. We met with the aforementioned, bright and engaging Dr. Josh Brody who gave us his detailed description of their vaccine and its previous successes. After answering our questions, he introduced us to Dr. Wan Kai Weng, who would oversee the stem cell transplant part of the process. Wan Kai is a spare young man, usually dressed in khaki pants and short sleeved, button-down oxfords. He began his medical training in immunology, became interested in the treatment of cancer, and moved to the BMT department of Stanford. He is exceedingly bright, soft spoken, and has a priceless bedside manner. (When I made the off-handed comment that my several bone marrow biopsies were non-events, he put his hand on my shoulder and said with an earnest twinkle: “then we are just the hospital for you”)
Wan Kai spent two hours with us that day. He described in detail the operation of the Lymphatic system. How it worked and what went wrong when it broke down and Lymphoma developed. He made the whole description interesting, never condescending, and available to the guy who never took high school biology.
Wan Kai sealed the deal for us. Couldn’t imagine going through this elsewhere.

Flash forward to 2:00 PM, Friday, Nov. 20. We are sitting in Dr. Weng's examining room. I have completed the vaccine portion of this trip, having spent 8 hours on the Apheresis machine one floor above. (You might recall from your Greek that the word Apheresis means “total body enema.”) They have collected sufficient white cells to make the next, more muscular, version of my vaccine.

This is the hand-off from Dr. Brody in "Vaccine" to Dr Weng in "BMT." Wan Kai examines me. Looks at my many test results. Asks how I feel. He describes, again, the coming events. As we finish, he looks over his glasses at me and says, with quiet conviction: “You know, you are about to make history.”
11/23/09

Rituxan/ Apheresis as Entertainment

OK. Not really. The final task of the Vaccine team is to perform a “clean up” of blood cells using the mono-clonal antibody Rituxan, then follow up the next day with a significant herding of the cleaned-up cells in the Apheresis machine.
At this point, getting a liter or so of Rituxan shouldn’t be a big deal—as it was a regular part of earlier chemotherapy. I could even sit and write my blog posting while getting it… So you can imagine while reading this that you are connected to an IV, listening to vaguely soothing new-agey kind of music, getting a little fuzzy-headed, and diligently patrolling the frontiers of your mind to check for intruders.
This particular infusion room is pretty busy. It is more formally run than the center in Bethesda where I received the earlier chemo. For one thing, the nurses all don spatter gowns when administering the drugs. This can be disconcerting. Most of the people seem “old” but I am certain that I look different. On the other hand, you really hate to see someone who is much younger in here. For obvious reasons.
The elderly gent across the room is wearing shorts and a short sleeved shirt. Because the temperature is no more than 65, he must be a beast.
They are ramping up the dosage rate as I write. In theory, as my tolerance proves itself, they can download faster. If my tolerance has declined a little, we may have some drama, during which time, I will defer logging my impressions. But so far, I would describe it as a mid-party fog. Time to stop drinking, if you have any sense, and you will feel fine tomorrow. Proceed beyond this point at your own risk.
Guess I will have one more beer.
11/18/09

Moving In (and One Important Correction)

To quote Rudyard Kipling, things are “proceeding according to precedent” here in Palo Alto. All three initial vaccine injections are done. No hair has appeared on my palms.
I moved into our new apartment across from the Hospital on Monday, after my last shot of vaccine. Jane arrived later that day. We bolstered the local economy (something which is totally unnecessary, to my eye) by buying all sorts of home and office supplies. The IT guy arrived on time. We went live on Tuesday Afternoon.
By Wednesday, no longer able to defer installation of my new and improved catheter, I spent the morning in outpatient surgery at the Stanford Cancer Center, where the nice surgeon did her work. (Any one desiring more information can Google “Central Venous Catheter” for details.) It will, no doubt come in handy in the coming weeks.
Thursday we worked in the morning and spent the afternoon getting our “truth in lending” session with the BMT people. The nurse informed us of many possible, unpleasant, or life-threatening, side effects. I am convinced none will apply to me, but thanked her for taking the time.
Then another nurse (Stanford seems to have an endless supply of well qualified and competent nurses) gave us a “training session” on the care and feeding of my new catheter.
Pretty worn out by all of this discussion of risks and infection, we retreated at the end of the day to a small, but excellent, wine bar in town, where I introduced Jane to a glass of “Zendagio,” a great Dry Creek blend that you can only seem to find around here.
Coming soon: When my blood tests indicate sufficient reaction to the vaccine, I will have a brief chemo session (actually Rituxan is an MAB, not technically chemotherapy) then spend a day or two back in the Aph. Center where they will collect all of those primed T-cells for future use. This could begin as early as Sunday or as late as 10 days after. In any event, we get Thanksgiving week off, as all of the girls and friends will be in town then. The Monday after Thanksgiving is set to begin the BMT process with a healthy dose of chemo, followed by a “harvest” of my stem cells for use in the transplant. It takes about two- three weeks to complete that part. Then, on or about the 22nd of Dec., I will check in to the hospital and begin the heavy lifting.
A Retraction, of sorts: During the waiting period before I began this process, the other initial vaccine candidate, who is a local resident, slipped in front on the schedule. He is now ahead of me by a week or two and is on course to be the first one through the trial. I have a little regret about this, but there is some comfort in having an older brother go through things before me. (actually, we are almost the same age)
And so, until further notice, our address will be: 1736 Oak Creek Drive, Apt # 207
Palo Alto, CA 94304
11/13/09

Ready Or Not

During the week of October 20th the good folks at Stanford gave me the signal that they were ready to start. Finished a host of pre-induction tests and left town on Wednesday night, October 28th.
Bright and early on the 29th, I appeared at the Apheresis center for some initial white cell collection. The Aph. center is a large room in the Cancer Center with maybe a dozen reclining "lazy-boys" around the perimeter. Behind each is a machine the size of a steamship trunk, with names like "Count Suckula," "the Leech,"and "Blood Sucker." Inside each is a spinning drum. It collects my blood and separates the blood cells, dividing red, white and plasma. White cells are the heaviest, they go to the outer perimeter, Voila!
My daughter, Joanna attended. Our nurse was a pro. We were finished by 11:00 or so.
Interviewed Erin Hillier, my assigned Social Worker at the Hospital, had lunch, drove to SF to meet Molly for Dinner, dropped off Jo, took Molly back with me to PA. Ready for Day 2.

Showed up at 8:00 for the pre-vaccine exam. I passed. So they gave me three separate pre-vaccinations: Pneumonia, Tetanus, Diphtheria (I recall). then off to the adjacent building for The Vaccine.
I am led into a largish exam room or a small operating theater--I am not too careful to note the details. Both Dr. Josh Brody, and Dr. Wan Kai Weng (head of the BMT dept.) are there. I am asked to lie down on the table (just for a vaccine injection??) and they proceed to describe the science of the day's events, the reason for the other vaccinations, etc. While one is speaking, two nurses, dressed in full length coveralls, with caps, and masks, wheel in a gurney with two large boxes--one is steaming with dry ice. The nurses look very serious and do not speak. On the gurney are my vaccine and a colossally expensive drug to augment its effects. I am told it was delivered via a tunnel under the hospital.
As one of the docs continues the science lecture, the other disappears behind my field of vision and hunches over the cart. The two nurses are very attentive.
Josh jokes that they will be loading the entire contents of one box into me today. He laughs. The room spins a bit. I laugh. The drama builds while Josh loads a tiny syringe with a total of 5cc's of fluid. He pinches some skin around my groin. Never felt a thing.
End of the session. The nurses watch me for an hour to make sure I don't misbehave. I am good.
We hang at the hospital for a while then go to lunch where I down two glasses of wine to celebrate the day.
Mike (10/30/09)