Monday, January 24, 2011

Day 15, cycle one. More good news and crazy bone pain

Howdy, all. Today is day 15 of cycle one and it's been a pretty good day so far. Items of note:
  • Looks like I will only have one more 21 day cycle of ICE. I think I misunderstood the protocol and thought I would do 4 doses. Turns out that for this protocol, the three doses at the beginning of the 21 day cycle constitute an entire cycle (in ABVD a cycle is 28 days long and consists of doses on days 1 and 14). So this means I will only get one more dose of ICE and the entire schedule will move up by six weeks. Yeah!
  • My nodes that are misbehaving are continuing to shrink. Most people would call these tumors but having seen them on an ultrasound, I prefer to think of them as misguided lymph nodes. They have normal lymphatic cells in them but they are also resident to some black hat cancer cells. So not purely a tumor like you'd get with a hard tumor cancer like prostrate or breast cancer. Anyway, they're definitely still shrinking. One has gone from marble to pea sized (4 cm -> 1.5 cm) and the other one isn't detectable by an external exam. So this means that I am responding well to the chemo which is a big first milestone to get over to pave the way for the stem cell harvest and transplant. There's no use harvesting your blood white cell stem cells if you'll still got a bunch of cancer in you so to even get into that program you have to be NED/CR (No Evidence of Disease, Complete Response). So this is all really good news.
  • I had a crazy day last week from the Neulasta, which is given to boost your WBCs after a dose of chemo. One night last week I had some weird bone pain. One manifestation was that I could feel my heart beating in my sternum and my lower back. I would stand up, walk around and then sit down and could feel my heart beating - and my bones would hurt with each beat of my heart. Not fun and sort of scary. The next issue was that I stood up from a chair in the evening and felt shooting pains through both my hits. Felt like I had broken my pelvis in two places. Ouch! And the next day I woke up and felt fine. Went for a spin on the stationary bike, had a normal day at work, no issues. And over a 4 day period starting with that crazy day, my WBCs when from 1.96 to 8.02. (normal is 4-9). So my bone marrow has been busy producing new white blood cells. My oncologist noted that this means I have very healthy bone marrow since it was so responsive to the Neulasta. Yeah! This is another good indicator that I will come out of the stem cell transplant process and recover well.
So the summary is that things are going well and my initial treatment will be six weeks shorter than I thought. Now we've got to get going on the whole stem cell transplant process. I've read a handout and have some sense for what's next, but we'll get some training on the details so we're well informed before we start that protocol. I'll keep you up to date as we lock in the specifics.

Many folks have asked how they can help and there is one area where you may be able to lend a hand. During the 4-6 week period after the transplant I will hopefully be at home (not in the hospital!) but I will need 7x24 babysitting since I won't be able to drive and need someone nearby in case I suddenly take a turn for the worse. When your immune system is so depressed you can get sick pretty quickly and if that happens, I'll need someone to drive me down to Denver to the oncology office. We'll definitely ask for help as needed to give Susan and other family members a break from being my baby sitter, so think about whether your schedule would allow being a during-the-day chauffeur during a period that will probably run mid-March to mid-April.

Ok, that's it for now. Have a good Monday, and enjoy the fact that your bone marrow is making happy, healthy white blood cells without making you feel like you just fractured your hips in multiple places!


  1. Thanks for the report! Stay strong! :)

  2. Glad to hear of your terrific progress! Its great that things are moving forward swiftly. I'm ready to be your helping neighbor/sister any time George. Right now I have free days most Mondays and Fridays, and weekends. I'm happy to come hang out with you at home if that fits into the protocol, or to be on call ..... Just let me know what you need! I'm right here. xo

  3. awesome! I'm getting more details on the transplant schedule in the next couple of days. We'll share as we learn the details of how much support I'll need when.

  4. This comment has been removed by the author.

  5. I pulled up your blog to review your old posts - to see how you did on cycle one of ABVD, but alas ... I see new posts. Obviously we were sad to hear the news. I do know however that 2011 is a great year to be cured of Hodgkin's. You might want to duck because a shootload of prayers and positive thoughts are coming your way.

  6. Hey, Kari. Yeah, I was really bummed that I'm having to share this experience with you. It's obviously every chemo patient's worse nightmare that the chemo won't solve the problem and you'll have go back for more. But as you know, the overall cure rate for Hodgkins is very high and I'm convinced that we'll both get there. My journey is unfortunately a bit longer than I would like but I'm definitely committed to getting it done in 2011!!!