MY STARS! THUNDER AND LIGHTNING! RATS AND BLUE BLAZES! SUFFERING CATS! BLISTERING HOP TOADS! ZOUNDS AND GADZOOKS!

If you are familiar with the children's book "Elbert's Bad Word", you 'll understand the title.  For those who haven't read it, the moral of the story is that sometimes you need strong words to express how you feel but they don't have to be bad words, and the words above are the ones used by Elbert when the croquet mallet falls on his toe.

This week I needed strong words to express how I felt.   

Last week was the end of another 9 week segment, so I had scans again.  And unfortunately the scans show the primary pelvic tumor is growing back.  It turns out that they now think that it was still there when I had my last scans in March just really well disguised.  In all the scans I have seen so far, there has been a definite visible boundary defining the perimeter of the tumor.   Turns out in the March scans the boundary wasn't visible and it blended really well into and looked just like the soft tissue around the site.  However the Braf drug had worked.  They are saying that it shrunk it from 5.3 cm in January to 1.4 cm in March.  Now the tumor is back up to about 2.4 cm. 

Honestly I am not completely surprised by this.  I had started feeling some pain in the area the week before  that felt hauntingly familiar to the pain I started feeling last summer. 

Since it is now apparent that the Braf drug is no longer working, I am no longer taking the drugs and I am drug free at the moment.  The next step is likely another targeted therapy that works similarly to Braf, just downstream on the protein chain I believe (I'm still trying to get educated).  This targeted therapy is called MEK.  And the clinical trial is again at MDACC.  Their trial is specifically for patients that have already been on the Braf drug.  There is a two week washout period before I can start this drug trial.  I will know more in the weeks to come about what sort of time I'll be spending in  Houston to as I start this new clinical trial.  


Despite this apparent setback, we are doing well and looking forward to a fun summer with the kids out of school.  Thanks very much for all of the kind words and prayers that have supported and helped us through this trial.

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. 

Week 9 Scans

I have now completed the first 9 week segment of treatment for the clinical trial of this new drug.  At the end of each 9 week segment they restage to check the current state of the cancerous masses and compare them to the previous state.  To do this, I undergo a CT (cat) scan that takes very small slices through my body and provides a cross section view of what's inside.

My last CT scan was performed just after Christmas.  Since then I started the clinical trial of the new drug at the beginning of February.  I immediately started feeling improvement.  That improvement has continued and I have felt better in the last several weeks than I have felt in the last several months.  So we were confident that the scans would show progress.  What we didn't know was how much progress we had made or exactly how well the drug was working

There are two main regions that the tumors  are located.  Up until now the scans have shown multiple nodules in my lungs and a couple of enlarged lymph nodes in my pelvic area.  The site that was causing me the most pain and discomfort was the primary tumor in a lymph node on my right side of my pelvis.  This had grown to be over 2 inches in diameter. 

So I met with Dr. Falchook today to go over yesterday's scans.  He shows me the images and we compared yesterday's scans with last December's.  We look at several nodules in the lungs all of which have shrunk.  They are still there but, they are shrinking.  We also compared the  pelvic area scans.  The scans showed no indication of tumor remaining in my pelvic area.  The radiologist that read the scans assumed in his report that the lymph node in this area had been surgically removed.  This doesn't mean I'm completely out of the woods yet.  I still have the tumors in the lungs to deal with and only time will tell if we can get a durable recession from this drug.  But it sure feels great to have been able to make a huge step in the right direction. 

This is far better than I could have hoped for and we have so much to be grateful for.  Not the least of which is the prayers, support, and encouragement we have received from so many of you that have brought to pass this miracle. 

Quick Update

I leave for Houston today.  I am now at the end of my first 9 week cycle on this new drug treatment/clinical trial.  So that means we will finally do scans.  Looking forward to seeing the results.  If the way I've been feeling since this treatment began is any indication, then I'm expecting to see good things on the scans. 

I meet with Dr. Falchook on Thursday and we will go over the scans and future treatment.  I'll check back in after that with an update.