The C Word – A New Battle Day 84 - It’s all in the Sequencing – Numbers and Letters

Today George and I celebrated our 14^th anniversary.  Our wedding date was 10/11/02…. Chosen because if you take out the dashes it becomes 101102… or more specifically, 101 102.  Easy to remember.  Also it is exactly one month before my birthday (whereas his first wedding was exactly one month before his birthday!).  Sometimes we need those little tricks to remember dates.

Just as we need those tricks to track things, so does our body.  The past few days we have heard about genomes and DNA and mismatched pairing and all sorts of stuff that is way over our heads - - but for which there is equipment to help break those substances down in order to help doctors and researchers in their work. 

One of the acronyms we heard this weekend was MSI – Microsatellite Instability.  This is one test that is done to determine if one is a candidate for immunotherapy.  Apparently if this number is high, ones response to immunotherapy is considered to be pretty good. 

We also heard about KRAS, GNAS, FBWX7 and more.  These are specific genomes that are tested to determine which type of chemo may work best.  Some of them appear distinctly in people with PMP cancer.  The goal is to keep looking at that data in order to one day be able to diagnose the disease before it has become a problem.  Right now, it is still in the very early stages of investigation and, given it’s rarity, there are not a lot of people looking at it.  George’s test showed some mutations as noted above, but the only clinical trials going on for it are at MD Anderson Texas, and the two chemos being used are more for something like kidneys or liver (vascular) or something along those lines and are solid tumors.  Not our type – not even worth checking into.

We saw slides about genomics and the four basic alpha characters assigned to everyone’s DNA.  Who we are, inside and out, is often determined by these pre-disposed characters.  Things that have happened in our lives can alter those to some degree, but not all things. 

After a weekend being educated further into “our” disease, and speaking to others, we felt more comfortable being able to ask questions and understand answers when we went to Stanford to see what they may be able to offer us.

We spent about 45 minutes with Dr. V Chen, a fellow at Stanford.  She appeared well versed in PMP and the available treatments at this point in time. Some of the things she told us were:

-       The 5 year survival rate for someone with this cancer is high, the 10 year survival rate is pretty good. 

-       She explained a bit about how PMP can be low grade aggressive – meaning that it proliferates (grows) mucin at a high rate and is relentless.  Is this what we are dealing with?  Low grade does not respond well to chemotherapy (high grade does respond better).

-       In regards to immunotherapy – about 5% of those tested will be considered for immunotheraphy. (I think I am stating that correctly). Of those, about 30% will have a positive response.  (And response is known within 3 months of starting treatment.)  Immunotherapy is done via IV injection.  If one has an autoimmune disease such as thyroid disease, etc., it will make those diseases worse while it supercharges the body.

-       Since Stanford is an academic research facility, they may know more about various diseases, but may not necessarily mean they can DO more.  They can get the ball rolling in the right direction.

-       Some medications for rare cancers are easier to get insurance to pay for (or for the manufacturers to help pay for) than “common cancers”. 

As we spoke about George’s case specifically, she indicated that while chemo is a reasonable strategy, it should not be the first thing he resorts to. She said that having chemo that has a low success rate on someone is worse and could actually shorten, not lengthen, life.  It makes people so sick that their immunity is compromised and makes fighting off things when the disease has progressed later more difficult.  It may only “buy” a short extension to life if any at all.

 The plan of action on their part is to get some more in-house testing done.  They will get the CT scans sent over, a specimen to do their own pathology and MSI testing, etc.  Once they have all of those things, they will look them over and present George’s case to the Tumor Board at Stanford (next week or the following) and they will then let us know what they feel is the best protocol. 

The recommendation from them may be to just keep doing debulking surgeries to remove the mucin that causes the problems.  They want to see the scans to determine if that is something that needs to happen in the short term. 

So where do we stand after this “information download” we have received.  We will set aside doing chemotherapy at this point and await not only the Stanford recommendations but also information from a third party that was recommended by George’s workplace.  From there we will weigh the results and do what feels right – what George feels is right for him. 

As my anniversary card to him stated (and his to me), we are stronger together, we will get through this together. “Will you marry me again?”, he asks.  “Yes, I will.”, is my response.

101-102…. You and I are far from through!! Happy Anniversary, honey!