MD Anderson

So here we are at the Wizards again, despite our prior unpleasant experiences. It’s been a long day of driving, tests, and doctor visits. Adding a thick layer of additional unpleasantness was back pain – very, very bad back pain. The month+ off of treatment has given the tumors in Maggie’s liver a new lease on life. They are growing again, enlarging her liver and causing tremendous pain. But we have a plan. It’s aggressive, logical and starts Monday.

My thanks to Nurse Jolie for writing the great update. I confess that my heart has just not been with posting lately. The last few weeks have been… hazy. On multiple occasions I’ve been driving when suddenly realized that I’ve driven several blocks with no memory what-so-ever of the last few minutes. How scary is that? Red lights and stop signs be damned! Although, if I were an avid bicycler or jogger I might stay off the roads around my house for a few months.

MD Anderson is an amazing buzz of stuff happening all at once. I question how much of the stuff is actually organized and/or intentional. It smacks of a thousand monkey’s typing, or rather, studying cancer (Trained Research Monkeys?)

Today we met with a seemingly endless stream of different people. In reality it was only seven: Dr. Kurzrock, three clinical trial coordinators, a financial counselor, a physician’s assistant, and a nurse. Of them all, Dr. Kurzrock was the clearly the most important. She had the biggest clipboard-toting entourage. She would walk, they’d walk. She’d stop, they’d stop. It was hilarious – like a scene out of the TV show House.

Dr. Kurzrock listened to Maggie’s story and, after she was done, told us that she had three studies to suggest. One was a clear outlier as the best choice in her opinion.  Some quick history will explain why.

A while back Maggie was taking oxaliplatin along with 5-FU and Avastin. Oxaliplatin has a nasty side-effect called neuropathy, a fancy word to describe tingling and numbness in the fingers and tootsies. It also causes extreme cold sensitivity; touching ice feels like touching fire. Essentially, the chemical that kills the cancer also causes nerve damage. Typically, the damage is temporary, as we experienced, but troublesome in that it is painful and causes difficulty with everyday living stuff like buttoning buttons or tying shoe laces, or anything else you need might your fingertips for.  And ice cream or cold juice is out of the question, both of which are comfort foods for my sweetie.

The oxaliplatin was doing it’s job nicely.  The tumors were shrinking and all was ok with the world.  However, we discontinued using oxaliplatin because of the increased neuropathy, NOT because oxaliplatin stopped working. The key point here is that oxaliplatin may have more fixin’ yet still to give us and thus, we are going to try. Dr. Kurzrock is going to inject a high dose of oxaliplatin directly into Maggie’s liver in hopes that we can knock down the tumors there one more time. Since oxaliplatin worked before it and was still working when we quit using it, it makes good sense that the oxaliplatin horse will ride again. The odds on this bet are way better than the mere roll of the dice we’d be pursuing were we to pick a random study. Of those two choices, we like this choice a whole lot better.

So we’ve signed up for the study. We start Monday.

8 thoughts on “MD Anderson

  1. We can all take turns buttoning buttons, tying shoeslaces and the the rest for y’all! Just make the tumors go away and the rest can be figured out later. So glad you both are part of my life. 🙂

  2. Or a muumuu with a stretchy belt…or (and I bet this will get Chris’ vote) just don’t wear any clothes at all! I’m sorry that you are in pain, but yay for the trial! Miss you guys already! Hugs and kisses.

  3. There is something familiar for me in your momentary escapes. There were times when I could not be sure of the difference between my sadness and rage. They seemed to happen at the same time. That scared me. My fix was to start meeting with a councilor. I have asked him to watch my back for depression. It is something for which I’m not sure my friends and family sharing this cancer experience retain the needed prospective. Honestly, they were more likely to accept and politely excuse my behavior. Prozac has evened things out and has helped keep me more myself. Depression is still a touchy subject but it’s easier to deal with out in the open.

    Hold Fast, You are shouldering so much.

    Don MacLeod

  4. We are all rooting for you here in North Texas. We BELIEVE this will work! I’ll take up a collection for mittens and scarves here at school…I’ll call it Wipe Maggie’s Cancer Out Cold! That way, she’ll have plenty of mittens, scarves, hats, blankets…anything else she needs. We love you lots, hang in there!

  5. Good luck with the oxaliplatin. Did I spel that right? Anyway, I hope it works wonders and the side effects stay to a minimum. Maggie, I know you’ll be showing those magicians at MD who’s boss in no time.

  6. Hi my name is Wendy and my husband has stage IV colorectal cancer. He was diagnosed at 40 and we have been battling it over three years now. I just wanted to say I have bookmarked your blog and will stay connected and have you close in my heart. I included our website below if you want to get to know our story too…. once there enter paulmiller1 (because there are two paul millers on caringbridge) and that should take you there.

    Just wanted to say someone over here in California can completely relate to caring for a spouse during cancer. Fight on and hang tough!!

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