Wild Ride

The roller coaster ride around here continues to go up and down and throw us wild curves when we least expect them. I probably should have posted an update sooner, but until yesterday we didn’t know where we were headed after the last wild corner.

After the Braf drug stopped working, we had decided to enroll in another clinical trial at MDACC for a MEK inhibitor drug that worked similarly to the Braf drug. So I travelled to Houston again at the end of June. I arrived Sunday June 21^st and was suppose to stay through Thursday of that week. To start off with on Monday I had blood tests then an MRI of the brain. I hadn't had an MRI for about 6 months and one was required before I could start the MEK drug study. Monday afternoon I met with the doctor administering the clinical trial to discuss the treatment and to enroll in the study. When we met, we went over everything - a physical and my current well being and everything was good until we looked at the MRI. The MRI showed 5 very small lesions in my brain. The largest of the lesions was about 6 mm in diameter.

One of the criteria for enrolling on MEK study is that if there are lesions (aka metastases = mets) in the brain they have to be stable (i.e. show now growth) for at least 2 months.; We don't know how long they've been there. It is likely that they are growing and not stable. So for now I am unable to enroll in the MEK study.

Since I wasn't able to start the new treatment I went back to my hotel, changed my flight and came home Tuesday morning.

Hearing that the cancer had spread to the brain was difficult news. This may have been the most difficult blow yet. But from where I sit now, we are very optimistic and feel that we have a lot of reasons to hope for a positive outcome.< After I got home we set up an appointment with Dr. Grossmann at HCI. I hadn’t seen him since I started the Braf trial in January. It was good to see him and he helped us understand what our options were and we determined a game plan. We decided the best plan of action would be to treat the brain lesions now. After the treatment we would monitor them and if they prove to be stable for two months then go back to enroll in the MEK clinical trial. In order to treat the brain lesions Dr. Grossmann referred me to a neurosurgeon at HCI. Prior to meeting with him, I had another more detailed, higher resolution MRI to better determine the exact location of the lesions, and to make sure there weren’t any that didn’t show up on the MDACC MRI. We met with the neurosurgeon on Tuesday of this week. He suggested that we use Stereotactic Radio Surgery (SRS) to treat the lesions in the brain. They have had very good success treating cases similar to mine with this treatment, and especially good success in melanoma patients. The success rate is somewhere around 80%. We are used to seeing numbers the exact opposite to that, thus the optimistic and positive outlook.

Despite having surgery in its name SRS is more of a procedure than a surgery – no incisions involved. SRS is also known as Gamma Knife or Cyber Knife. My rudimentary understanding of the procedure is that it directs a very intense, very focused beam of radiation at the lesion within the brain, killing it on the spot. It is an outpatient procedure that will take one day and with no activity restrictions following.

I go in on Friday the 16^th of this month to have this done. Once this is done we will have to wait two months before we start the next treatment. We will do scout scans about 4 weeks out to see how things look and then a full MRI at 8 weeks to see if they are stable (hopefully nothing but scar tissue left). If they are stable then I’ll travel back to Houston to enroll in the MEK trial. If not we still have a number of good treatment options that include the TIL cells that were harvested in ’09, Ipilumimab and another chemo regimen.

This has been a long journey and from the looks of things, it will continue to be. We are very thankful for people for enduring with us through this. The fact that people continue to show care and give support means the world to us. THANKS.

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.