Tuesday, August 18, 2009

Houston - Round 2

To start off I would just like to send a thank you to everyone. We are continually amazed at how kind, generous and thoughtful people have been. We don't feel deserving of it, but it is very appreciated.

I have now had a discussion with Dr. Patel in Houston after the department team meeting. He has given us some options to consider. I have discussed those options with my family, Dr. Liz Hammond and Dr. Dave Gardner (great family friends that have helped me through this from day one), and my doctor here, Dr. Noyes.

Based on the recommendations from Houston and the above discussions, we've decided to go back to Houston for further treatment. There are still a few loose ends regarding the exact treatment that we're trying to tie up in the next couple of days, but nonetheless we're headed back to Houston. On Monday 8.31.09 I will meet with Dr. Patel and a surgeon to begin to formulate a game plan. There are a couple of questions that we won't have answered until shortly thereafter. Mainly they want to know if the tumor in my lymph node or the nodules in my lungs are growing. They will determine that by performing new CT and MRI scans directly after my visit with Dr. Patel and the surgeon. If they are not growing, they will go in and remove the cancerous lymph node and then monitor the lungs in the future to watch for future growth. At this point, we may or may not start a drug treatment called IL2. We'll have to wait and see.

The other option if the tumors are growing gets a little more complicated. They will want to harvest some tissue from the lymph node tumor. From this harvested tissue they can then separate the lymphocytes from the tissue. These lymphocytes are part of the immune system that fights off the cancer. They take the lymphocytes from the harvested tissue and grow them in the lab from thousands to something exponentially bigger (billions if I remember correctly). I'll come back later to what these are used for. The question will be if the tumor is growing, do they want to start me on a regimen of IL2 first before harvesting the tissue, or just go ahead and take the tissue. And that will be a game time decision made between us, Dr. Patel and the surgeon.

So why do they harvest and grow the lymphocytes? These lymphocytes become TIL (Tumor Infiltrating Lymphocytes). So in tandem with the IL2 drug treatment they start me on chemo to kill off all my other lymphocytes (lymphodepletion). This makes room for the TIL to come in. At some point they inject me with the TIL and it goes to work killing off the tumors. It doesn't work every time, but has shown some promising results.

From scenario one (remove lymph node monitor lungs) the lymphocytes will be harvested from the tissue and the TIL grown for possible future use if the nodules in the lungs grow.

Sorry for the lengthy explanation. Thanks again for your support.


Shannon said...

Ben, Seth and Piper and I think of you every day. We are so sorry. You can beat this darn cancer. Know that we are pulling for you guys.
Love Seth, Shannon and Piper Dunlop

ghd3 said...

great update, Ben. Thank you. (great explanation, as well.) Are you in SLC until the end of the month then, when you head to Houston again? We continue to hope and pray for you all. Glad that things are moving ahead quickly but deliberately. It sounds like you're getting good advice and making good judgments. Keep us all posted!

RLRP said...

We're all in favor of lengthy explanations - thanks for taking the time to keep us updated. We are thinking of you and your family constantly.

Ben said...

Troy -

We're in SLC until the end of the month when we head to Houston.

Catherine said...

Thanks for keeping us in the loop Ben. We're here for you.

Kathryn said...

Thanks for the update! Sounds like you have some great people working to fight this thing with you. Good luck! I hope things continue to move quickly...Always in my thoughts and prayers!!

amy said...

We've been anxious for the update and thinking of you everyday. Thanks for the details. Sounds like you have some good options. We are so glad that you will be able to be in Houston with a team of experts. Will Allison and the kids stay in SLC? Know that you continue to be in our prayers.
Amy and John

Sarah said...

Ben & Allison,

Thanks for the update. You have been in front of our thoughts and prayers and will continue to be. We love you guys!!

Sarah and Chad

Anne said...

I'm sorry to say I'm still a bit confused about the treatments, but it sounds like you know what you are doing. Make sure to get lots of play time in before Houston. :)
Still praying for you.

Gordy said...

Thanks for taking the time to keep us updated. Great to hear your positive attitude. Keep up the good fight. Our thoughts and prayers are with you.

Courtney said...

Thank you for the detailed explanation. We are praying and fasting for you. Thanks for your example of faith and courage!

James said...

Ben, Details are good. I'm glad you've been able to find medical experts to treat the cancer, we pray for you and them, that they will be able to prescribe the treatment that will lead you back to complete health. You are an example of faith and humility to all of us. Your strength is amazing to me. Our family loves you and we pray for you.
-James, Sandra, and the five princesses!

The Stephen & Alisha Rose Family said...

Ben, from our experience, it sounds like you are in really, really good hands. We are so happy that you sought out the best medical care.

Brittany said...

Best wishes to you and your family Ben. You're in our thoughts and prayers.