Tuesday, May 18, 2010

No News is Good News

The last several weeks have been a case of  'no news is good news.'  We are continuing to stay the course and from what we know currently, will for the foreseeable future. 

Just in case I wasn't clear before or you need a refresher, I'll give a quick description of 'The Course'.  My treatment is a clinical trial drug.  This drug is a Braf inhibitor.  I won't go into all the details of what the Braf inhibitor* does, but I will say it has had a very favorable effect in my case.  This drug is a simple pill that I take orally twice a day.  However, due to the clinical trial nature of the drug they are only able to give me 21 days worth of the drug at a time.  Therefore, I have to return to MDACC in Houston every three weeks to see Dr. Falchook for a refill.  The every 3 week visits entail a blood test, a very simple physical, and a EKG.  Assuming the results from the tests and physical are fine, they send me home with enough pills for another 21 days.  Since my last scan I have been back down to Houston twice.  For these visits I fly down the night before, stay overnight, meet with the doctor and fly home that afternoon.

Every third visit, which occurs at 9 week intervals, will include new CT scans.  My next visit with scans happens in two weeks.  These visits are the same as above but include the CT scans and an Echo-cardiogram. 

I am currently feeling great.  In fact I would venture to say that I feel better now than I did in July last year when I was diagnosed.  The list of potential side effects with this drug are minimal and I haven't experienced any ill effects from it.  I had a fun three days with the kids marching around Arches National Park in end of April.  I'm back on the bike, and despite my lack of fitness, just feel extremely blessed to be out at all.  I'm even almost happy to mow the lawn.

*If you are interested to know more about how the Braf Inhibitor works, let me know and I will be glad to either respond in email or if there is enough interest I can do a post and try to describe it. 

5 comments:

laura said...

That's the truth - no news is good news! We're so grateful. Thanks for posting and keeping us updated. The creator of the Braf inhibitor goes straight to heaven.

Kathryn said...

YAY for good news! Love that you are back on the bike and loving it! Hope to see you guys soon!
Kathryn

Anonymous said...

Hi from the Isle of Man - Great Britain.
We know mum and dad. (say hello).
I read the blog and admire it all.
Glad to read you are on the bike. Look out for Mark Cavendish in the Tour of California. He is from our place.

ghd3 said...

So great to hear, Ben. And I'd love to read/learn a little more about how the braf inhibitor works.

We are SO grateful that "no news" continues to be such great news.

Talk soon!

RLRP said...

Yes, even mowing the lawn is a blessing - I understand. My heart is light.