The C Word – A New Battle Day 101 - Status Quo

My Facebook reminder told me that one year ago today we were had just returned from seeing Dr. Lowy.  At that time we had recently had the one year scan and were debating what to do next and seeking a second opinion. 

Today we were awaiting the results from the Stanford Tumor Board for exactly the same type of advice.  Dr. Harroldsdatter phone this evening to let us know what transpired.  Which is basically what I had posted right after we saw her a few weeks ago.  Hold off on doing any sort of systemic chemo.  Further treatment will be more surgeries going forward.  She advised that George try to watch what and how he eats to prevent any small bowel blockages.  She did also say that it looked as though the partial blockage was due to adhesions, not tumors or mucin related.  That was good news.  Though we are still awaiting results from the “satellite testing” to determine of immunotherapy will be an option, she did say again that the chances were pretty slim of that being a match.  She said that there should be at least six months between surgeries.

We will now likely phone Dr. Bastidas for a couple of reasons (1) it has been 3 months and would like to see how he feels things are going and (2) get on board to have scans done every six months unless something occurs in the meantime to warrant a scan.

So - - - back to watch and wait - - and pray and pray.  George says this is a “double-edged sword”.  On the one hand they suggest that you go until you start having issues that would warrant a surgery to fix it.  But going that long may mean that debulking surgery is more aggressive and need to have more “parts” removed - - and George is short on parts these days.  We will need to figure out how to handle this “watch and wait” process.  Ugh!

We have been enjoying some time during this “lull”.  Although George feels on the cusp of having blockages some days, or very uncomfortable because of various aches and pains, we have managed to have some great moments.  We’ve gone to the movies, attend his high school reunion, and this weekend are in Roseville babysitting the twins. 

We’ve talked to a nutritionist and have put ourselves back on a plant-based diet for the most part, eating more veggies and protein type foods and less meats (not given up on them entirely).  Nancy, the nutritionist, suggested that George try to eat 4-6 smaller meals, with half of them being easily digestible – things such as soups and stews, eggs, etc.  I’ve spent a LOT of time in the kitchen these past two weeks.  We’ve made two different batches of beef stew, a vegetable soup, frittatas, oatmeal and so on.  I try to make a few things in large batches that we can eat over several days.  This appears to be working – and George can tell when he’s had too much to eat or eaten the wrong types of foods. 

I’ve made reservations for us to go back East in early December to visit with family.  It will be a quick trip.  I used some of my frequent flyer mileage to upgrade our seats to first class. This way George has better access to a bathroom that is shared only by the number of seats in first class and not with the entire plane!  (It also gets us on and off the plane first!) Now we keep our fingers crossed that he stays healthy for the trip – because we haven’t had a vacation for over a year.

Today I had one upsetting moment.  On the way here we passed several accidents due to a huge rainstorm that had hit the area overnight – the first significant rainfall for us this year.  On I-80 the traffic backed up suddenly and my map told me that there was an accident about a mile or two ahead.  As we made our way past the accident scene, the tow truck had a truck he had pulled off the side of the road.  There was no roof on the cab – and there was a yellow tarp over something in the front seat - - the body of someone in the vehicle though could not be sure if it was passenger or driver from where the body sat.  My mind froze, fixated on the fact that we just witnessed a dead person under that tarp.  I flashed back to the image in the newspaper the day after Mike died - - an image of a body on a gurney covered in a tarp - - on the first very rainy day of 2000. I experienced a deja-vu moment and it was a bit disconcerting.  I blinked back tears for some minutes after driving by the accident scene. 

I was reminded again of how precious life is – and how not one of us knows what tomorrow may bring.  God knows the number of days we have but we do not.  Some of us know that our day may come sooner than later because of serious illnesses, cancers, age, etc.   

Not a day goes by that we are not reminded of the fact that George has cancer.  The elephant still sits by close at hand.  I am glad that George and I are having some time to make new memories with one another, with our families and our friends.  We’ve had some time to laugh and to relax.  For brief moments we are able to not think about the C word.  I am grateful for those precious moments. 

Now - - back to life with 8-year old twins!  Their giggles are enough to cheer anyone up!!

Next up in the cue (next weekend)- - a girls night out for Dawn and our vow renewal! Our children are in charge – and we have no clue what they’ve planned for us!  I’m sure it will be a lot of fun!!

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!

The C Word – A New Battle Day 82 - New friends with something in common

We spent most of this weekend at events held for others with PMP cancer.  Last night was a social event for dinner at Massaro and Santos in Monterey.  While we thought this event would bring together more of the “locals”, we discovered that people came from all over the U.S., Canada and even Australia and China.  We mingled with other patients and caregivers, listened to one another’s stories, learned some things and laughed together as well.

We learned how PMP is handled in China and a little bit about their health care system.  I sat next to someone who has been on TPN for nearly a year and also has a GI bag.  We talked to people who have are part of the “one and done” team – those who had one surgery and are living cancer free (some may also have had chemo as part of their regiment).  And we talked to people who have undergone one or more rounds of chemo.  Some people are long term survivors (10 or more years), more than half were five years or under.  There was mention of a few that we’d never met who lost their battle in recent months or years.

Today we spent the day at the Bayonet and Blackhorse golf club in Seaside hearing from an array of speakers.  They included a surgeon specialist from UC San Diego where they have just started looking into genome therapy for this disease, from the company that has built the machines that do the genome testing to determine specific mutations for all sorts of cancers and diseases, from Foundation Medical which does genome testing (and was the organization where George’s samples were sent for testing).  We also heard from both PMP Pals Network that held this event and ACPMP (appendix cancer/pseudomyxoma peritonei).  PMP pals network is a group that support those going through this cancer journey with supportive people, connecting people to services and so on.  ACPMP is a fundraising arm that support research specific to these rare cancers as well as offering support to those going through PMP treatment. 

The last speaker was named Anna Renault, a 67 year old woman who has been diagnosed and treated for 9 different cancers as well as had many other illnesss and “bad things” happen to her over the past 50 years.  She still has quite a zest for life and talked about the importance of having faith and hope, how to find the good in even the worst of situations.  I sat there and marveled at this walking miracle as she proclaimed that God has allowed her to live this long in spite of all the turmoil and spoke of the various ways she has used this “extra time” in her life to write books, mentor others, and even do an internet talk show.  She encouraged others in the room to use extra time on earth to use their talents to do something positive.  I commented to George that he has nothing to complain about in comparison to her - - specifically talking about the times when George comments, “the hits keep coming, when do we catch a break”.  Anna was inspirational to say the least. 

During the day we were able to connect with a couple from San Jose as well as a very newly diagnosed man from Fremont and hope to keep in touch more frequently.  We met up with our friend Pam and her husband who were part of the gathering for PMP that I set up this past July. 

While we did not hear much “new” today, we were able to have things we’d heard about explained in more detail.  Some good, some not.  But overall the theme was “do not give up the fight”.  Even if the odds are not very good for some treatments, they are better than doing nothing.  We were also encouraged that science and technology are making some huge advances overall.  While we are part of a “rare cancer” group, eventually there may be ways to detect and determine better targeted therapies for cancer across the board. 

We came away from this weekend with more friends, more supporters, more things to think about as we head into our appointment with the GI Oncology doctor at Stanford tomorrow afternoon. It is likely she will have nothing new to offer us at this time, but we need to get in there and make it known that we are interested in ANY treatments that may make a difference if they hear of anything as technology makes advances. 

We are grateful for all of the people we met over the weekend and are so glad we took the time to attend this event.  We are bonded by our mutual disease and now have new resources to turn to as questions come up in our journey.