Monday, July 29, 2013

Round 2 Schedule

[Sigh] Not that these were ever fun to write but it's certainly not getting any more enjoyable. Just gonna keep this one to the facts.

We me with the AK oncologist last week and found that he had been able to talk with doctor we had selected at University of Penn...without ever meeting or seeing the facilities. Based on the biopsy results, still just Hodgkins but obviously an aggressive form. They were in agreement on the proscribed treatment and the fact that it needs to be started soon since it came back so fast. The working theory is that the ABVD chemo killed most of the cancer but there was some that was resistant to the ABVD and now that has come back strong, meaning that ABVD isn't an option going forward because this is obviously going to be resistant to it.

This time, the treatment will consist of roughly 5 stages:

  1. ICE chemo: Similar in side-effects to ABVD but perhaps a bit harsher. On the plus side, I only have to go three rounds and its every 3 weeks instead of every other.  Comes with a pretty big downside though in that instead of 5-6 hours in the chemo chair, I've got to be in a hospital bed for 3-days straight because it's a continuous feed. Awesome.  We will start this phase on 8/12 in Alaska.
  2. Stem Cell harvesting: Somehow the chemo causes the stem cells to leave the bone marrow and go into the blood stream at which point they are harvested and stored to later be transplanted back into me. This should kick off in early October.
  3. Super chemo: Not completely sure what this is except that it's an extremely high dose of chemo that kills everything, including what remains of my stem cells. 2-3 weeks after harvesting?
  4. Stem Cell transplant: I assume this occurs soon after the super chemo, quite necessarily
  5. Recovery: This is the longest stage. I think I'm in the hospital full-time for stages 2-4 and at least part of 5. I can't leave the hospital until my transplanted stem cells "graft" which means they start reproducing on their own. The time required for that can't be predicted with any accuracy, anywhere from a couple of weeks to...?  Then there's a lot of time at home building everything back up.
Wow. Writing it all out like that wasn't depressing at all. Even though we had already decided to head back east for treatment, it turns out that I couldn't have completed the treatment up here even if I wanted to because they don't do stem cell transplants here. My second round of chemo will be due around 9/3 (after Labor Day) so I'll be flying back east about a week before, depending on when I can set my first appointment with this new doctor. Niko (and now Migsy) are coming with us and Julie needs to bring her bike so she's planning on driving the pets and gear all the way back to PA. She'll be leaving a little ahead of me.

My brother and sister are coming up to visit later this week so pretty excited about that. Other than that, we'll just be making the most of what's left of this awesome summer weather we've been having up here (no sarcasm this time) before we head back. I'll get a firmer schedule when I meet with the PA doctor but it sounds like best case scenario, I'm not sniffing Alaska again before February. At least I'll get to watch plenty of Flyers and Eagles games.

Monday, July 22, 2013

They're Baaaack

About a week and half ago, I noticed some lumps on the left side of my neck in the exact same location as last time. I ignored them for a few days, knowing full well what this meant but went to the oncologist when they hadn't disappeared after a few days. He was not optimistic but wanted me to get another PET scan before allowing that the Hodgkins was back. Had the PET scan last Weds, results back on Thursday and it was confirmed. The cancer is back in the lymph nodes on the left side of my neck and my chest. I feel great otherwise, I just got this shit that insists on growing in me. I'm pretty pissed about this, it's really starting cramp my style.

There's no really telling for sure why this has come back so quickly but while rare, it is not unheard of.  The going theory is that the first chemo killed all but a little bit of the cancer with the stuff that was not killed being chemo resistant.  That would mean what's left is resistant to the type of chemo I've already done. Another possibility is that the initial pathology performed as part of the lymph node biopsy missed something and that my cancer was Hodgkins mixed with some other kind of lymphoma cancer. My oncologist didn't seem to think that was likely but he also "thought" I was cured.

The treatment plan this time around is still up in the air because I will NOT be getting treatment in Alaska (couldn't even if I wanted) and I need to find a center/doctor in the Philly area. We're working on that selection process now but not sure when treatment will actually start. No later then our already scheduled trip back east in early Sept. Julie will be coming and staying too. It's not definite but it sounds like it's going to be another 2-3 months of a different kind of chemo followed by a high-dose of "super" chemo coupled with a stem cell transplant (another 3 months). Whatever it is, it ain't going to be fun. There may even be some bubble-boy action in there.

Here's a link on the stem cell transplant process: I haven't read it all yet. I'd be getting an autologous one, ie I am the donor as opposed to having someone else as the donor.

Things are obviously all messed up right now but we're trying to get a firm plan and sort it all out. I'm not much of a cheerleader so that's not the kind of support I need right now. Knowing that people are following this blog and the occasional comment are what helps most from the mental standpoint.