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.

Monday, June 16, 2014

seattle fan

We are moving forward with the Seattle trial.  If all goes well I may be able to start July 7th.  I will still need to qualify, but we should know if I do most likely after a colonoscopy.  Working on getting one of those soon.  Cross your fingers, I would be very excited to get into this.

Thank you for your sympathies and well wishes.  We are having a lovely summer, despite the uncertainties.  We are our better selves when we have a clear plan of attack, but seem to be doing just fine knowing that things are moving along.  I love feeling healthy and am just thrilled that I can still ride my bike against the wind, play basketball with the boys, and stay up late with Josh.  Feeling healthy is such a blessing.

Tuesday, June 10, 2014

not great

I miss yesterday's life already.

Scan results were as my doctor put it, "not great."  The good news is there is nothing new in the brain or elsewhere.  The bad news is those tumors hanging around the kidney have joined together and are invading the kidney, duodenum, and liver.

The cancer is spreading.  We have to treat it.

I have already tried radiation to this area.  Surgery would be pretty major right now (may include kidney removal and a colostomy bag).

My first choice is the TIL trial in Seattle.  I will call them and get the details of qualifying.  The big hurdle will be the colitis I had at the beginning of the year.  I will need a colonoscopy free of inflammation at the very least to qualify.  I need to make sure that is our only challenge, and then figure out timing.  It seems like they have to take the cells they have frozen in Seattle and multiply them even more and I don't remember how long it takes.

Second option would be the braf inhibitors.  I have a mutation in my cancer cells that allow for a quick and amazing response to these drugs.  They work within days and they work on most who have this mutation.  The trick is, they are effective for only so long.  I have never been super interested in this drug because I am not interested in a few more months of life.  But, I need to remember there are people doing well for years on the drug.  And we would be using them to shrink those tumors down to allow surgery, and then I could come off of them.  Not ideal in my mind, but I could get used to this.

How horrible for my husband to hear (I wanted to cup his ears so he wouldn't have to).  What an awful situation to explain to my kids (I could have squeezed them and cried like a baby, but I'm the mom).  It hurts to type it out (it makes it real).  But in the ultimate act of betrayal, my body is taking over.  It is what it is.

So tonight we morn.  Tomorrow we research.  This week we decide.  And then, we fight.

I worry tonight that I don't have what it takes.  I don't know what it's going to take, but I also know I have more strength and courage to give.  I hope they at least match up.

Monday, June 9, 2014


We started the summer with a quick trip to the coast.  It was the perfect distraction for what is coming tomorrow afternoon: scan results.  Anxious mess ever since we got home.

Of all the attractions in San Diego, my kids chose an aircraft carrier museum.   I don't get it, but all the boys were on the same page.  "AWESOME!!!"

Our hotel had a non-chlorine, heated, outdoor pools.  All day fun.
Underwater selfie contest.

Winner?  Teenagers are super fun.
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Boogie boards!

They only make sandcastles now to destroy them with sand bombs.  We have lost all the artistry of the job.

I think I feel closer to God on a beach than just about anywhere.

It is so comforting to me that there are still things to be discovered at the bottom of the ocean.  

Everything I love.
This guy too.

Love spending uninterrupted time with my family.   Yes to family vacations!