Friday, July 9, 2010

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 21st 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 16th 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.


Katy said...

I'm so glad I checked your blog first thing this morning. Thanks for the update. Good luck with the treatment next week, hope it all goes smoothly. Please let us know if you guys ever need anything . We're rooting for you!! Love, The Smiths

Kathryn said...

Dang it! If there is anyone that can continually fight this thing, it is you Ben! Hang in there! Good Luck next week...I hope you know how many thoughts and prayers are out there on behalf of you and your family!! You are loved.

RLRP said...

You have definitely been on my mind lately and I've been wondering how things were going. I'm so sorry for this latest blow, but am happy to hear that there are good things to be done. Just so you know, you and your family have never left our prayers. Keep fighting! We're sending our fighting spirits your way. Thanks for posting.

Anonymous said...

Ben, we think of you everyday - - several times throughout the day. We pray for you daily, our children pray for you. We fast for you every fast Sunday and will continue to do so until you have this licked. We love you and we have been agonizing over this latest development. Our hearts are with you and Allison.

That said, we are encouraged by the new treatment options that are before you and by your fighting spirit. Miracles happen, as you know, and you can do this! Just know that you aren't doing it alone. There are hundreds of us pulling for you.

Anonymous said...

Greetings from over here on the Isle of Man. I keep an eye on your updates and think about you and the family. In some ways, it is good to read your latest one.You may not know this, your dad sends me an Ensign magazine and it just so happens, I read it this morning. I am not in the Mormon Church but the magazine makes me divert my thoughts in a Westerly direction. You are a strong guy, keep it up.

Elizabeth said...

You are so amazing and optimistic. We will keep you in our thoughts and prayers. We love your family so much and have learned a lot from you! Good luck with the treatments. Love, the Millers

Sally said...

We throughly enjoyed your visits this last weekend. You and Allison are true friends. We continue to pray for you and those in the medical team working with you. You and your family have touched so many lives for the better. We love you, Ben. Keep up the good fight and we will be thinking of you on the 16th.
Love, Sally & Clint

Steve said...

Ben you have a great perspective on this.

ghd3 said...

You'll be riding with us in spirit this weekend on the STP -- we'll miss you, but will have some good representation from Team Firestorm!

Jardinefamily said...

Thanks for the update. We have been wondering when you would start the next clinical trial. You have such a great determination. You are always in our prayers.
Becky and James

Amy said...

We will be thinking of you on Friday. Hugs and prayers!

ANGIE said...

Ben and Allison,
You have both been an amazing wonder to me. Your courage through this has touched me and left me with a greater understanding of the Lord's plan for each of us. God be with you. Our prayers are with you and your sweet family. Ben thank you for your shining example!

Much love,
Angie and Jason Boren