The Future of Metastatic Cancer Research

"When it comes to cancer, time matters."  C. Anthony Blau

It's my belief that we are at the very start of cancer research. If you think about how much more we know than we did 50 years ago, sure, we have made great strides;  some cancers that were formerly incurable now have treatments that allow people to live a normal lifespan. CML is one great example. But those breakthroughs are few and far between, and for people like me, who have languished for four years with metastatic disease, basically waiting to die - it is not enough.  Other areas of our life are unrecognizable from before.  60 years ago, there were no computers, no internet, no cell phones, no satellite TV.  Look what we have now.  Yet, the way cancer research is conducted, despite the new tools, is not that much different than it used to be.  That can and should be fixed, and I am writing about somebody who wants to be at the forefront.

I have written a lot about the problem with the philanthropic end of breast cancer, and it is common knowledge that I believe that many charities don't give enough money to metastatic research.  But I don't often write about the problems with research itself.  I did talk about it when I was at SXSW 2015, and I have eagerly watched the process of ASCO's CancerLinQ. I became concerned about that idea though, when ASCO started putting value on cancer patient's lives.  I truly feel they should be expenditure-neutral.  Aside from them, I see nobody else trying to put patient data into the cloud to learn from it, and it has saddened that medical research seem to be stuck in a time warp.

Wait, you haven't been following this?  What do I mean?  Who is doing research?

Well, the research that will eventually turn into a treatment for you is done by very smart people in labs at cancer institutions, medical schools, government labs and pharmaceutical companies.  They don't work together, just as individual businesses don't work together.  They are each answering to their own stakeholder.  Yes, I believe they all want to solve this terrible problem; these are human beings who have had mothers and sisters and fathers with cancer.  I believe in altruism and I know a lot of people go into this field to solve the cancer mystery.

But rules are rules.  The way it works now, research may be repeated across the world. Grants are only funded if they fit existing theories about how cancer works - that means the genius who has a brilliant out-of-the-mainstream idea has little recourse in getting that idea heard.  Any difference in cellular or genetic properties could be the breakthrough we need and could be turned into a treatment, but each individual only works in their own little area and cannot step out.  A research doctor asking for a grant proposal knows that only 20% of ALL ideas are even funded and approvals require small, next level thinking - not the leaps we need.  Steps are slow and incremental. Even when something has made the cut, going through the long process, getting it to the clinic - to you, the patient, is very slow. Imagination is no longer a valued commodity when it comes to research. Yes, safety is important but for those of us who are terminal, we might be willing to throw some safety out the door for an improved chance at life.

In this era of Big Data, it no longer has to be this way.  Big Data has the power to put information at every single researcher's fingertips, and enable the magical discovery that may advance the understanding of cancer.

I'm not alone in thinking this way.   Please watch this amazing video from Dr. C. Anthony Blau, Professor of Hematology at the University of Washington School of Medicine.   His area of interest is metastatic triple negative breast cancer.  This video is ten minutes long and I really think you should take the time to watch, as he can explain to you much more than I can, in a better way.  You will stand up and cheer at the end, I promise.

I had the honor of speaking to him.  He has developed a web-based tool called the Tumor Crowd Modeling Platform, This is designed to so that cancer patients can upload their molecular and lab data for comments by experts around the world.  If you have had your tumor sequenced, you can uupload it to the cloud, and specialists, cancer researchers and experts from any discipline across the world can look through the data. Maybe somebody may see connections that cause a spark, and who knows? Maybe come up with the next Geevac or Herceptin.  Or,  maybe they'll find something that they they can recommend to just one you.

That, in fact, has already happened.  

Dr. Blau told me that nobody has ever said no in answering a question about a mutation that was found that seemed different, no matter what institution they work for, what papers were published or about to be.  Researchers get back to their roots and want to help.

Dr. Blau asked me if I thought this was something cancer patients would be interested in, and my answer?

Hell yes.

There are some very difficult issues he has to surmount.  Money.  Finding people with the ability to get their tumor sequenced and have it uploaded.  Money.  The fear of patient identification. (Not my fear).  Money.

But this is the type of thinking that in 2016 we need.  If I am wrong, you can post below. If I am right, you can post below.

To learn more about Dr. Blau, you can also read his Reddit AMA.

Tradition

"Mom, are you going to make deviled eggs for the party? I haven't had those in a while."

I hadn't planned that particular menu item,  but when your son is home from college and makes a request...well, it becomes reality - at least if this mother has anything to do with it.  Damn kid tricked me into loving him and wanting to do things for him.  He's 18, a sophomore in college, and 6 foot tall.

All I can do for him now is make an egg.

(And pay for college.)

"Sure."  I add eggs to my shopping list.

We have an appetizer spread Christmas Eve.  It's a tradition I started when I married my husband. Previously, the only thing that happened on Christmas Eve was a hopefully Silent Night.  Tradition stated that the kids got to open one present in the evening -  always new pajamas and a book to read in bed. This "Mommy, can we open just one present, just one.....pleeeeeease?"  appeasement was supposed to help them sleep on that most exciting of nights. A good book and soft, comfy PJs with a stern warning to stay in bed was wrapped and ready for them each Christmas Eve.

Change happens.  Being a single mom and marrying a man with two daughters meant I needed to be flexible and get creative about holiday traditions.  I knew their mother would want the girls for Christmas, so I tried to find way to make it easy and fun for everybody.   I came up with the idea of a Christmas Eve party. I put out a spread, and we drink hot cider, eat a bunch of appetizers, and open gifts before the big day.  Christmas Day was the day Santa came for little kids.  Christmas Eve became family gift day.  Two days of fun, what kid would complain about that?  

The tradition has stuck over the years, long after Santa moved on and the girls grew up.  This year my stepdaughter's son - my beautiful grandchild -  is 18 months old - almost old enough to understand something wonderful happens this day. I fear another change will happen soon as they live nearly 100 miles away.  At some point, travel might become impossible.   But at least for this year, our now firmly entrenched holiday traditions continue.

Now is all that counts for any of us.

Honoring my son's desire, I stood by the sink, peeling eggs, Christmas music Serial playing in the background.  I had boiled just enough eggs to fill all sections of my vintage deviled egg plate.  I cracked the next egg and started to peel it.  I mindlessly chipped off a piece of shell and then another.  I was just prying up a flake here and there with my fingernail.  I kept trying, mostly engrossed in the podcast, the egg smooth in my hands, California water immorally flowing from the faucet as I washed off chip after chip.  After ten minutes, I suddenly realized I was getting nowhere; the egg was still mostly shell. Chip, bang, flick - tiny piece by piece - that egg would not peel.  You've all been there, I'm sure.  I tried to get to that air pocket in the ends of the eggs, but nope, it didn't exist.   I banged the egg on the counter and rolled it around to crack it fully, but nothing happened, it wouldn't peel.   I couldn't find that weird skin in this egg that would allow the shell to slide off. Each time I grabbed a piece with my weak nails, the weaker skin tore.  That shell was firmly glued on.

Shoot.  I'd done 7 eggs with no problem, but the 8th egg was one of "those" - the kind that are impossible to open, some sort of genetically mutated glue masquerading as egg.  Usually when I come across one of those modest eggs who refused to become undressed,  I usually give it up, rip off the white and expose the little green ball of yolk to just use for filling,  but this time I needed a whole egg to complete the plate. So there I stood, chipping minuscule pieces off, slowly, like the baby chicken itself was trying to hatch with its tiny soft beak.  At the 30 minute mark I said out loud, "This is ridiculous!" I cursed myself for only boiling as many as I needed.  I realized that my timing for getting the food on the table was behind because of this one, stupid egg.   Still,  I kept at it.  Chip.  Chip.  Millimeter by millimeter I picked off shell, finally ending up with a whole, perfect egg.  Whew.  My platter would be complete. My son would have his deviled eggs.

A couple of months ago in October,  my being able to stand up and make even something simple like a deviled egg seemed an impossibility.  I was truly, fearfully sick.  I was unable to eat and had lost weight; weight that I could not afford to lose, dipping into the 80s.  I was having terrible pain in my abdomen - rolling on the floor pain - pain bad enough so that a normal person would have gone to the hospital.  No pain med would help. It gnawed on me even in my sleep.   After testing, new cancer was found throughout my abdomen and chest, and I started a new chemo, which made me sick - nauseated, tired, and which incredibly, increased my pain.  I was truly feeling like this was the beginning of the end, and there would be no Christmas party, no appetizers, maybe not even a me.  I hoped to do our normal Christmas,  but I really felt like it wasn't going to happen.  Not that I would be dead, but that I'd be in bed.

In November I started TDM-1 aka Kadcyla. (All HER2 metastatic woman who have dealt with cancer for a while say that - "TDM-1 aka Kadcyla".  Most of us watched the progress of this drug through the FDA approval system, so still think of it as the test name)  My first infusion was awful, like movie chemo.  I was on my hands and knees, vomiting. I had every side effect, from constipation to heartburn to neuropathy.  Everything hurt.  I felt better just in time to get my next infusion, which was easier on me, the nausea down to just a few days.  Then, some of my cancery symptoms were gone.  By my third infusion, December 23rd, surprisingly, I felt much better.  Pain is now down to a livable level (although it is still more than anybody should have to deal with and that is another blog post) and sometimes, if I'm vewwy vewwy still, I don't hurt at all.  I'm still tired but that can be managed, and the nausea, for the most part, is gone.  Incredibly, I can eat again, without pain.  I will have a scan in the next month or so to see what the treatment is doing, and I feel pretty positive about it. Can I once again be responding to a chemo?   I cannot imagine I can feel this normal and still have cancer spreading and growing throughout my system, although by now I know anything can happen.

Christmas lives, and so do I.  The appetizer party continues.

Like all who have metastatic cancer, my mind can be consumed with "lasts."  As my time on earth dwindles, as I know it is, I wonder more about what will happen when I am gone. What traditions will live on?   It may be my last holiday - but will it be the last gathering for my family too?

Just as I was the one who decided on the Christmas Eve party, I am also the one who is in charge of all gatherings.  Every celebration is spent here: Thanksgiving, Christmas, Easter, my husband's birthday.  The planning, the cooking, the invitations, the timing, the gift purchasing, the entertaining - all decisions, it's all up to me, even these days.  My husband now goes to the store for me, and helps clean, but still, for the most part, I am the planner, and fortunately, I have been able to keep it up.

What happens when I'm gone?  Will my husband continue having family over for Christmas Eve appetizers? For Easter?  A barbecue on his birthday?  Will he do the planning and work involved, or will he become a guest, invited to one house or another?  Will the various sides of our family still gather together or will they all go separate ways as more children enter the mix and travelling gets more difficult? What changes will happen without me being the host, I wonder?

I've worked hard for our home to be the touchstone, the place where relationships are renewed and we all catch up, and I wanted it to be the place where we watch the kids grow.

Will that happen still?

Or, when I am gone, will differences chip away at the family until it is no more?

Maybe that would that have happened anyway. It's natural for people to move on and start new traditions, as I did so long ago.   It takes work to keep a family together, to keep traditions going.  I love family celebrations, enough to spend 30 minutes picking at an egg.

Does the rest of my family?

I'll never know.