Monday, June 30, 2014

The colonoscopy this week showed normal colon.  We also did an upper GI scope and could not see the tumor from the inside of the duodenum.  There is some concern about the tumor being involved in the bowel, increasing the risk of perforation during the treatments.  If it is in the bowel, it is not too deep into it yet.

So Seattle said we can proceed.  I have spent plenty of time this week researching, leaving messages on phones, coordinating schedules, finding answers to my hundreds of questions, reading TIL experiences on blogs.  What time I haven't been actively involved in the matter, my mind is on the problem.

And still I am not sure this is going to happen.

Let me just say that I don't feel good about any option.  But I can't say no to everything or I will soon be in a bind.  Action must be taken, but committing to something is proving very hard.

Every five minutes I change my mind about the trial.  It's the best idea and an incredible chance, and suddenly it is sure to damage me and bankrupt us and will never work.  

I am entertaining the surgical approach.  I just made an appointment with my surgeon to see what exactly that surgery would look like.  I think at this point it is between surgery and the trial, and I really don't know how ugly the surgery would be.  There is a lot of important things taking place right there in the duodenum.

Let me try and express the debate.

My next treatment, as all my treatments before, will be done with the intent of curing this disease.  I am not looking for palliative measures.

TIL has the potential for a cure.  We know that.  From what I gather this has only been done on hundreds of patients, with a reported 50% of people getting some sort of response.  As many as 20% see all of their cancer disappear (complete response).  It wipes out my existing immune system and replaces it with cells that were involved in attacking my cancer (harvested from the tumor they took out in September).  It comes with some pretty significant risks.  But the part that makes me nervous is wiping out my immune system.  My immune system has responded to everything we have thrown at it.

The only tumor left after my incredible response to IPI were the armpit tumor I had removed, and this area around the kidney and adrenal gland.  So in two years I have had no new spots of cancer.  I used to get tumors popping up over night all over the place and I used to have 25 tumors in my brain.  I don't understand why these particular adrenal tumors are not cooperating, but what if I take them out?  Is there a chance no new tumors will ever develop?  I have read stories where surgically removing what remains after a response to immune-therapy does lead to a durable response.  I don't have any numbers to share.  It just makes sense to me.  And if something did pop up later we could radiate it and hopefully do PD-1 (the Florida drug) again (it is in the process of being approved by the FDA).

The reasons not to do the surgery is the consequences of the surgery which will at the very least removal of the kidney and some of the bowel (and from what I understand a tricky part of the bowel, but I really need to get the correct info from the surgeon).  I suppose the liver could be involved and I don't know much about that.  One of the huge drawbacks is that this surgery could very easily disqualify me for trials down the road.  The doctor in Seattle thought that a nephrectomy wouldn't necessarily disqualify me for TIL.  However, I would certainly have to go into surgery knowing that this could be a consequence.

If I had new tumors, maybe even one new tumor, I think I would be 100% on board for the TIL.  But no new tumors for 2 years?

Ugh, I hate making life or death decisions.

Let's just say it is consuming all my energy and at the end of the day I don't care at all about the state of the house or what I've fed my kids or what I'm doing tomorrow or if anyone has showered.  I watch the sun set (so lovely from my back yard) and instead of soaking it in I stress that another day went by with no conclusions made.

I am swallowed up in something that is eating me alive.  It's bad business.

But.  This stage can only last so long.  Things will hopefully be more clear next week.  They have to be, I have to treat this soon.  Seattle was going to start defrosting my cells on Wed. to start treatment on the 10th (they don't want that tumor to get any bigger).  I have to be fully committed before they take those cells out of the freezer.  If they start growing them and I back out they have to waste them.  I can't see the surgeon until Thursday, so we will be pushing those Seattle dates back.

I will keep you posted.  Thank you for your words of encouragement and offers to help.  The only thing I can think of right now is if you have any connections with a GI or general surgeon who would be willing to give me their opinion on this surgery, send them my way.


  1. Alisa, not sure if this will help or not, but I had a small "spot" on my duodenum about 2 years ago. At that time, I had no other melanoma tumors, so I went the surgery route. My surgeon was Dr. Courtney Scaife (Huntsman) and she recommended I have a "Whipple" surgery. She was very thorough & professional & proactive, and I felt well prepared for all the variables. Even though I was the "1 in a million" who had a difficult recovery and all the worst-case scenarios, the final outcome was further spots or tumors in that area. I had to have a part of my pancreas removed, as well, and will forever have to take a pancreatic enzyme to add my nutrient absorption. It was a long, hard recovery that affected my digestion and my overall strength, but I feel it was the right choice for me at the time. Might be worth it to talk to Dr. Scaife, especially if the Whipple would be involved. God bless your decision-making... I know it's hard, but you will be blessed, whatever route you choose.

  2. Alisa thinking about you night and day and hoping and praying that you will know what to do. All my love to you.

  3. This sounds so overwhelming. I am sorry for the stress and anxiety this is causing you. It all sounds exhausting, but I love how you just research the heck out of it all to try and make sense of it. I pray that you will be guided in the right direction and feel peace in your decision. Hang in there friend!!

  4. You are freaking amazing. Thanks for updating us. You'll never know how much I look up to you!

  5. Decision making of this caliber is always bad business, but you are handling it so well. I will pray that things will be as clear for you as possible, Alisa. I know that what ever choice you make it will be what's best. Love you!

  6. You are in my prayers that clarity can come your way! You will make the best decision. I love words like "potential for a cure"- getting over these hurdles = bright future ahead. You're awesome!

  7. Thanks for updating. I've been anxious to hear what your plan was but didn't want to ask since I"m sure you don't need one more person asking. I can only imagine how exhausted you are mentally. Just reading about all that you've learned and discovered makes me exhausted to think about! Praying for you!

  8. You are such a strong person, as is your family. Maybe you don't like hearing that - but it is true. Your strength to research and gain knowledge and do all you can to find the answer that is the best for you is both touching and amazing. I think of you often and pray for you and your family always. <3