Sunday, June 12, 2011

I wish I wrote more often

I wish I wrote here more often. I probably have things to say. For some reason taking the short amount of time out of my otherwise copious amounts of down time never happens.

Oh well.

Since last February when I wrote my last post I guess a few things of note have happened.

I did three months of FOLFOX+Avastin and had another PET/CT. It wasn't good. Things hadn't gotten any better. Maybe they were a little worse. So that meant that the Oxaliplatin wasn't having the desired effect. I took stock of the situation with my Oncologist and we decided that the best thing to do was to try an eGFR-inhibitor based therapy (which I am eligible for as I have wild-type KRAS). There are two candidates for colorectal cancer in general use: Erbitux and Vectibix. As far as I can tell they are nearly the same. Except you get Vectibix every two weeks instead of once a week. I'm on Vectibix now.

eGFR-inhibitor based therapies are known to cause an acne-like reaction in people. I happened to go to Florida to visit family several days after starting therapy. I ended up with what would definitely be described as "above grade 3" side effects from the medication. It was awful. Definitely not like "just having acne" again. Just a few days ago I got my second dose (I took 5 weeks off to get over the first one). We halved the dose in an attempt to keep the side effects down. So far I am not having any major issues. If I'm clear by the end of the week I guess that'll be great news.

This Tuesday I am going to see Dr. Jeff Geschwind at Johns Hopkins Interventional Radiology about surgical options to treat my liver metastasis. For people with localized metastasis or stage III colon cancer surgical techniques can be very effective for curative effects. Unfortunately I am not in that category. As far as I know the extent of my disease has been a small (~2cm) liver metastasis, a ~3cm lymph node, and maybe possibly two nodules in my lungs. Most of it seems to be pretty slow growing. Indeed, the greatest danger to my long term health in liver failure. Thus I am interested to see what the surgeons think about doing something about the liver itself. There are several interesting procedures that can be used to likely eradicate the liver mass (including some super fancy yttrium-90 "microspheres" that have to be overnight shipped from Australia or something which directly irradiate the mass from the inside).

Like I said though, I am not an "ideal" candidate for this sort of thing since even if the liver mass is completely removed it's not going to be curative. We'll just have to wait and see what the surgeons things. Personally, I'm all about it.

I try not to think too hard about the statistics for all of this expensive treatment. It's depressing. You could spend $200,000 on treatment that, using ensemble statistics, might increase your life expectancy by a month or two. I'm really looking for the 5-25 year range here. I dunno, there's nothing more that I think I can do than what I am. Hopefully I continue to be a statistical anomaly in many senses of the phrase.

In a completely unrelated (to my health) note, Emily and I recently returned from our first real vacation. It was great. We went to Colorado, Utah, and Arizona. We saw many sites of the desert west. Maybe I'll write another post about it sometime.

2 comments:

  1. So glad I checked to see about an update! I've only been checking every few weeks since it had been so long. I'm glad you got a little break from the chemo, even if it was just b/c you had such a bad reaction to it. You didn't mention the trip to the surgeon when I talked to you on the phone a few nights ago. Any update there? Also, did you ever hear anything else from the Sarasota people? I'm assuming "no" since you haven't mentioned it, but I know you've had a few adventures, so I just thought I'd bring it up in case. I LOVED seeing all the photos on fb of your trip. I am so so SOOOOOO happy you two finally got to take some time off work for a "selfish" reason, NOT health or family related event. Just some time for you two:) I LOVE it!

    Oh, and I forgot to mention when we talked, but BOTH Alegria and Dralion are in Florida! I'm really REALLY hoping to make it to both, but it might only be the latter. Super uber excited!!!!!! It's been so long since I saw one live!

    I love you... Love you so so so SOOOO much! Fingers (and toes and hairs and just about anything else I can cross) that you're the 25 year anomaly. *hugs... lots and lots of hugs*

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  2. Thought i would check your blog and you posted!!!!! I'm so thrilled you and Emily had such a wonderful trip out west.........we live in such an awesome country!!!!!!!!!!
    I'm with holly..........ditto..25 yr anomaly.............that's YOU!!!!
    Love you lots. ALWAYS thinking of you!!!!!!
    Hugs........................

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