Friday, November 6, 2009

Back to Houston

This week we had new CT scans.  The CT scans are the litmus test for how effective the treatments have been.  The CT scans take cross-sectional pictures every 5 millimeters throughout my torso. These images show the tumors in the lungs and in the groin.   The Radiologists are then able to compare Wednesday's images with those of previous scans.

This time around we're seeing the tumors going in the wrong direction.  The lung nodules have grown and the number has increased.  The lymph node tumor to the right of my groin has grown from about 3 centimeters to almost 6 centimeters in the largest diameter.  Obviously not the results we hoped we would see.

Step 1 from here Allison and I leave on Sunday for Houston  for a week.  I have a clinic visit with doctors there on Monday and then surgery to remove the tumor from my groin on Wednesday.  From that tumor they will harvest lymphocytes, on the order of a couple thousand, I believe.  The harvested lymphocytes will be grown/multiplied in the lab to a couple hundred thousand.  These lymphocytes are important because they are preprogrammed to fight the cancer.  They call them Tumor Infiltrating Lymphocytes or TIL.  The growth/multiplication of the TIL takes about 7 weeks with about a 50% success rate in growing them in the lab.  The reason for growing the TIL in the lab is to reinject me with them at a later date and send them through the body to attack the melanoma wherever it exists. 

After the surgery comes Step 2 which is a little unclear.  We will discuss what comes next with the doctors at MD Anderson and my doctor here at HCI and then determine what will be our best treatment.  They tell me I'll need about 4 weeks to recover from the surgery before they consider any more treatment.  That leaves at least 3 weeks before the TIL would be ready.  So currently my doctor would like to start me on one of a couple different chemotherapy regimens.  The regimen is undetermined at this time and these regimens would last 8 weeks.  We would need to complete the chemo regimen before we could consider the reinjection of the the TIL.  In fact at the end of the 8 weeks we would do new CT scans, and if those scans show that the chemo is effective we may not use the TIL.  But since the TIL appears to be one of the most effective treatments, we want to 'bank' it in case the chemo is not effective.  If that's the case at the end of the 8 week chemo regimen we will most likely turn to the TIL. 

So as is par for this course, we don't know all the answers. But we are proceeding with what we feel gives us the best chance for success, and expecting zigs, zags, and forks down the road.

We're doing well, the kids are doing great and we have much to be thankful for, not the least of which is the great support and prayers of friends and family.  We appreciate everything that has been done on our behalf and hope for the best in all your lives.


Anonymous said...

Hi Ben,

Ged Power and family here from the Isle of Man, Great Britain.
Your father, Ted posted the link in the email he sent last night. I hope you don't mind that I can make a comment, I would like you to know that we have great respect for your Mum and Dad and reading your diary really stimulates some thoughts with me.
I know you have great people and great strength around you.

Katy said...

You'll be in our thoughts and prayers this upcoming week in Houston. Keep up the good fight!
Katy and Scott Smith

Anne said...

Those are two steps are doozies. It seemed there were 4-5 parts per step, but they sound promising. Good luck with the surgery this week, and we'll pray for those babies to multiply in the lab.

Anonymous said...

That is not the news we were hoping for. We are however, glad that they are going to do the surgery on Wed. and start moving along with the new treatment quickly. Surgery doesn't sound fun at all but whatever it takes to get that stuff out of there. We will, as always, keep you in our prayers. Especially on Wednesday.
Amy and John

Fritz said...

Hi Ben, I am Nisie's brother who went through testicular cancer (lymph node dissection surgery and chemotherapy) over the last couple of years. My prognosis is looking better. I hope the best for you and your family. -Fritz

Jane Durham said...

Darn. I've never heard of TIL before, sounds pretty neat, I'm glad there are options. Good luck at MD Anderson, and know we're hoping and praying for you!

Heather said...

We love you, Ben and Allison! You are in our thoughts and prayers. You are two amazing people. We are so honored to have you as our friends. Hang in there, Ben, and know we are with you!!!! We hope all goes well in Houston.

Anonymous said...

Ben, just wanted to say it was wonderful seeing you yesterday. Your positive attitude and outlook on your treatments will give you great strength. Take care in Houston, the surgery will be a success! We'll see you when you get back! Love, Nisie, Nicolai and Carlos

Elizabeth said...

I'm not sure I understood all of that medical terminology. You're quite the expert. We love your family so much and we hope and pray everything works out. You both are amazing examples to us and we think and pray about you daily.
Love, Mike & Liz Miller & Family

Kathryn said...

I love you guys! Good luck in Houston...Ben you are strong and I know you will keep up this fight. There are many people thinking and praying for you!! Good luck with the surgery. You are great examples to so many!

steph said...

I guess one good thing is hopefully your leg/groin will feel a lot better with that big lymph node out... Our thoughts and prayers are with you.

Chad said...

You and your family are in our prayers. Let us know if we can help in any way.
Chad and Amy Hemingway

Rock said...


Hang in there. I will be praying for you, your family and the physicians who will treat you.


LZ said...

I just found out about all of this. My thoughts and prayers are with you. Let me know if I can be of any help to you and your family. I work in the deptartment of radiology at the U. All the best!

Lauren zollinger

Sarah said...

We are thinking about you today!! I hope that it goes smoothly. Our love and prayers for you and Allison!

Sarah and Chad

Jardinefamily said...

James and I will be thinking of you guys this week while you are in Houston. You are in our prayers, always.

Liz said...

We're sending love your way as well. We are inspiried always by your strength and watch and pray. Kim and Elizabeth Burt