Friday, June 26, 2009

Let's get techie!

I had a long conversation with Dr. Albritton yesterday (although I predict Nick will be working with Dr. Grier, also at Dana Farber, as lead onc) and we discussed Nick's options after surgery. She also confirms with Dr. Chen & Gouw that Nick should not have any more adriamycin (red devil) - damages the heart, or ifosfamide - causes leukemia. She is thrilled Nick's surgery may be laproscopic.

1. Do nothing after surgery. Not unreasonable as there isn't a tumor to measure any benefit of additional chemotherapy. Nick did not receive any additional chemo after his major surgery in Boston last year, either, and the cancer came back. Something to keep in mind.

2. Maintenance chemo - there is a clinical trial (phase III) where the chemo drugs aren't quite so toxic without lifetime maximums. Nick is probably eligible for the trial (someone who has maxed out on traditional chemo with no visible tumors). Half of the patients receive a placebo and the other half have the drug. The drug is a mTOR inhibitor (look it up...) and is not a cure, but rather slows down recurrence.

3. There are two other drugs that work well for rhabdo (other than the other top 4 Nick has already received) - topotecan and irinotecan. We are hesitant to use these now when we can't measure Nick's response/resistance to these drugs and want to save them as an ace in the hole. If Nick were to use these drugs now, what could we use if he relapsed again?

4. Ifosfamide and adriamycin are the strongest chemo drugs available for the more aggressive, high risk tumors (stage 4 alveolar rhabdo, for example). Cytoxan and actinomycin are two drugs used for a more standard risk. She favors this option and may be administered on an outpatient basis, vs. a 5-day hospital stay.

So, Nick will put this all in his thinking cap to ponder. We anticipate meeting with Dr. Grier possibly the first week in August to discuss and confirm post-surgery treatment. We will all pray with Nick for guidance in making the best decision possible.

His counts plummeted yesterday and so is taking it easy the rest of the week. He's bumming he can't go with Kesley to her birthday party - at a trampoline gym. Next Thursday is when he will have his next set of scans and it will be the first time ever that I won't be hassling the radiology department personally for a printout of the report. Dr. Chen will be thrilled because she gets an axious phone call from me before she has had a chance to review it.

Thanks everyone for keeping up on Nick! More to follow...



Anonymous said...

I am still in shock and think I blocked the fact that Nick relapsed. I recalled today as I looked in my favorites. Praying you feel great about the decisions you have to make and that Nick will be healed on Earth forever this time.
Michelle (Diego's Mom)

Chris Ulvin said...

Dear Nick,
Friends at church today asked about you - which reminded me of how many people pray for you. I look forward to your future testimony in which you can say four words: "You prayed. I'm here." May God guide your walk in all things - chemo decisions included. Love, aunt Chris