A story of hope & IMETELSTAT - Treatment for MDS & MF

kmall

Hello Patients, Survivors, Caregivers, Family Members and Medical Professionals of cancer.  I am here to tell the story of my best friend who passed away several years ago from various forms of sarcoma.  By the time it was over probably too many to even keep track of.  This is not only a story of sorrow but most importantly one of hope and the desire to live.  Since his passing breakthrough treatments in certain areas which are still under development are quickly gaining recognition.  Hopefully some in this community will benefit from these options in the very near future, but first my story.

My friend Matthew Sapolin was in short, the GREATEST man I have ever known.  I had the privilege of meeting him at age 15 when I moved from Arizona to Long Island New York after my parents’ divorce.  It was a difficult time for me but meeting Matt changed all of that.  See Matt just happened to be blind, although I never, ever not even for a second considered him disabled.  In fact, he couldn’t be farther from.  At age 5 he had lost sight in both eyes to Retina Blastoma, a horrific eye cancer which at the time was almost always fatal.  I remember speaking with his mother shortly after his passing and she informed me that of all 12 children admitted to the specialized hospital in NYC with his condition; some from very far off parts of the world, he was the only one that survived.  When she shared that with me it hit home even more just how special and rare my 26-year friendship with this tremendous person was.

Back in the mid 70’s when Matt was diagnosed the only way to combat Retina Blastoma was the removal of the eye itself.  In his case both of his eyes were removed.  This form of cancer spread very quickly from the retinas into the brain making the survival rate extremely low.  By the time I met Matt he was 15 so I never knew him the 10 years prior to his diagnosis.  Although throughout our friendship together he would share memories from having sight as a very young child.  His Mother’s face, the description of colors and even a scene from the movie Jaws we happened to be watching together one time were just a few I recall.  Thanks to his family, especially his mother he was treated as everyone else and as such was never coddled as a child.  This in part certainly was the catalyst to form the greatness he was to become.

While growing up he exceled in sports and music in particular. He ended up placing 2^nd in the New York State Wrestling Championships at the 132 lb. weight class, which is one of the toughest as anyone who wrestles knows.  He garnered a tremendous amount of respect from sighted wrestlers from around the state.  In college at NYU he continued his passion for wrestling and was even featured in Sports Illustrated magazine in Feb. 1992.

https://www.si.com/vault/issue/710953/17

https://www.si.com/vault/issue/710953/21

He formed a band in High School and started off playing drums at local parties and venues covering Pink Floyd, Led Zeppelin, Black Sabbath and many other popular bands from that era as well as their own original songs.  They were called Eggplant.  I always thought it was an odd name, but like Matt maybe I should have considered it unique.  By the time he made it to college he was proficient in not only drums, but the guitar and bass.  I even remember a xylophone in his basement back in High School!  But that was Matt.  Always one to try anything and usually the best at it by the time he mastered whatever it was.

Fast forward a few years later to 2002 and Matt finds himself working as Executive Director For The People With Disabilities For The City Of New York under the office of Mayor Michael Bloomberg.  He landed that position after getting his Masters Degree and working at various Social agencies in NYC.  It was here he found his true calling in life and pushed the envelope for the rights of people with disabilities.  I’ve never seen someone so determined to make a difference while all the time treating everyone he encountered as an equal.  Shortly after assuming that position Mayor Bloomberg appointed him Commissioner.  It was the first time in the history of NYC that there was a Commissioner for People With Disabilities.  Mayor Bloomberg saw in Matt what I had known all these years, he was truly one in a billion.  It was here that my story turns.  Matt had found a lump in his upper left shoulder around this time and it was removed.  Not thinking much of it he pressed on at work even harder all the while running not one but two NYC Marathons, getting married, teaching a class as an Adjunct Professor at the City University of New York.  His accomplishments as Commissioner are too numerous to list here but I will provide this link and remember these are just a mere fraction of what he accomplished in his life.

https://www1.nyc.gov/office-of-the-mayor/news/425-11/mayor-bloomberg-the-death-mayor-s-office-people-disabilities-commissioner

Well true to form Matt put his new position ahead of himself and found himself too “busy” to go for follow up exams with his doctor following his shoulder surgery.  It resurfaced in the same area and an even greater mass was removed.  Not long after he started confiding in me that he was having stomach pains.  He was so full of life and energy I never thought for a second it could have been something as sinister as it was.  His cancer had spread and was soon latched onto his Vena Cava – a main vein which brings blood to your heart.  Soon he was undergoing painful chemotherapy treatments and when that failed, he endured a 12-hour surgery to remove it at Memorial Sloan Kettering Hospital in NYC.  All the while he continued working tirelessly for the people he represented.  That day at the hospital was one of the hardest I have ever been through and I’ve had some very hard days in my life.

We all had very high hopes for Matt’s recovery and he did indeed “bounce back” after surgery.  Time carried on and we were able to do the things we enjoyed doing as friends in High School and Roommates in college.  Going to concerts, having dinners out with friends, playing chess, sharing old time memories over a couple of cold beers; well I still drank beer, he preferred Scotch as he had “matured” a little more than me.  Unfortunately, these times were fleeting and I knew it.  Deep down no matter how hard he fought and carried on I knew our time together was coming to an end.  I did as much as I could to spend ANY time I could with him, which between our schedules and personal obligations wasn’t easy.  Sometimes my own family had to take a back seat, but they understood what he meant to me.  Within a year or so after that surgery he was back in Chemotherapy.  This time it had spread.  His liver, lungs, stomach and bone marrow had all become infected.  He never showed how scared he was but I knew he was frightened.  He never complained about anything.  He took it all in stride and continued working as much as he could in between treatments, MRI’s, CAT scans and everything else that goes along with being in the fight of your life.  I knew he could fight it.  If it was anyone it was him.

Our time together no longer consisted of beers and scotch, going to concerts and dinners out were very few and far between.  It was still time of reflection of times gone by.  Being young, going to the local watering holes or beach, past girlfriends, parties with friends, going fishing, getting caught smoking weed by his Dad on numerous occasions.  But now it was mainly in hospital rooms.  Hooked up to IV’s for hours at a time, throwing up in a garbage can, falling asleep in a chair mid conversation.  This was my friend.  My brother.  My closest confidant in this entire world for 26 years and he was leaving.  There was nothing I could do.  I’ve never felt so hopeless.  It was a feeling that haunts me to this day.  Seven years later.  Tears well up in my eyes as I write this.

His greatest fear he had was the morphine pump.  He never told me directly, but I knew Matt.  Even better than his wife.  We had been through so much together.  I could write a book.  Maybe several.  That’s how it is when you have that special bond.  You just know.  He fought it for a very long time as numerous doctors suggested it.  Instead he carried a leather satchel.  A big one.  Full of pills.  Jars not bottles.  Xanax, Dilaudid, Vicodin, Valium, Morphine; these are just the ones I remember.  Taking handfuls to ease his pain had me concerned.  Very concerned.  I even called his mother who was living in Puerto Rico to tell her that it was bad.  In typical form “Matthew will tell me when he’s not well.” was the defiant response I received.  It was different.  I knew, and she listened.  Flying back shortly after she saw for herself.  All the while he never told any of us what we all knew.  He worked when he could.  Playing a most pivotal role of making certain that the new design of the September 11^th Memorial at the World Trade Center site would be accessible to everyone.  He worked tirelessly under his rigorous Chemotherapy treatments to sign off on the project only when this was completed.  He didn’t negotiate with architects and planners.  If everyone couldn’t view it then he would not waiver.  I remember him working on this for a very long time, taking phone calls in between dinners, treatments, or while just sitting and watching TV together.

Matt’s father Morty had passed away from liver cancer 15 years prior to his battle.  When Morty received his morphine pump it was the beginning of his end.  Matt knew this and that was why he had refused it for so long.  Five months after that conversation with his Mother, he dropped the news on me.  “I’m getting the pump.  They are going to put it in next week.”  That’s all he had to say.  It was time.  My friend of 26 years was hanging up his gloves.  His battle had ended.

The last time I saw Matt was in his driveway.  I had stopped by to give him a bag of weed.  Helped with the nausea, the boredom of being homebound for the most part, kept up his appetite, made him happy.  He couldn’t have been happier.  For a moment it was like he was 15 again.  There was a smirk in his ever-present smile, a twinkle in his prosthetic eyes.  He showed me the pump, a trigger in his hand with a button attached to a tube that went into his side.  It was cold outside.  The second week of November, but he proudly pulled up his shirt to show off his new toy.  “Look, all I have to do is push this button.  It’s amazing.  No more pain.”  He was smiling.  A gentle hug and I was pulling out watching him close the door behind him to the safety of his house.  He lived his entire life in that home.  It was a sanctuary.  A tear flowed down my cheek as I drove away.  

Twelve days later he went to the hospital.  An infection.  Nothing major.  He was with his family.  I was out of town, and he would be having his tube removed temporarily to deal with minor complications.  Surgery was first thing in the morning and he promised he’d call as soon as he was out.

I anxiously awaited the call.  One pm, then 2 turned to 5.  No call.  My phone was dying and needed to charge.  Just after 8 my phone rang.  I darted to the other side of the room and pulled the phone from the charger.  It was Matt.  He was tired and just waking up.  True to form, he kept his word.  Words were soft and drawn.  He was drugged and groggy.  It had been a long day.  “I Love You Bro.” and that was it.  I closed my phone relieved to have talked to my friend.  He was ok.  I will see him in a day or two as soon as possible.

Those would be the last words I heard my friend say.  He quietly passed the following morning.  An adverse reaction.  His body was done.  It was a fight that lasted 36 years.  A man of epic proportions was ripped from this earth.  I am never the same.  There isn’t a day that goes by that there aren’t reminders good and bad.  I question my being.  The being of others.  Why of all people did HE have to suffer?  It doesn’t seem fair.

It rained the day we brought him back to where he came.  A cold hard ground that dreary December morning.  The rain came down.  The clouds hung low.  Angels were crying.  A train passed by as we said our goodbyes.  Off in the distance it sounded its horn.  The same train he boarded every day to work.  Weaving through commuters, finding his way.  Sometimes with one of his trusty guide dogs or when in between dogs, a cane.  The same train we boarded as kids to go find trouble sometimes as teenagers do in a big city.  He was at peace now.

I learned so much from my friend, that entire experience and how fleeting life is.  As a loved one of someone struggling with cancer I learned to always be there.  Every chance you get.  Go to treatments.  Act like old times.  Sometimes pretend like it isn’t happening.  Just be there.  I wish I could trade places sometimes.  He was destined for even greater things.  Had even gone down to Washington D.C. to consider a job offer.  The possibilities were endless.  But it wasn’t to be.  Never take for granted the love you can give even in the smallest of moments.  I have no regrets.  I was there and tried to be just what we always were.  Friends.

Matt’s life was one filled with passion and promise.  To this day I run into old friends, acquaintances sometimes strangers who all tell me what an impact he has had on their lives.  I learned a lot from him.  Take chances and never give up.  Treat each day special and love the little things that make us all unique.  He would give anything to have an extra year, six months or even a week.  It would never be squandered.  Keep hope alive in your hearts no matter how tough the day may be.  I wish he was here and had some of the options available now.  I am happy to share my story of my dear friend and a life overflowing with success.  It is within anyone’s reach, no matter what condition or stage you find yourselves in; patients or caregivers.

I am also excited to share some interesting developments in the world of cancer treatments.  There is a new drug under development that may have helped my friend Matt called IMETELSTAT.  It is a drug used to treat MDS and MF that is being developed by GERON.  It just finished P2 trials with REMARKABLE results.  Where there are few options for treatment this looks to be a break through medical treatment with very few, and it should be noted REVERSIBLE side effects.  My dream is that it will be deemed for Compassionate Use immediately as the P3 trials will not be started until mid-2019 at the earliest, which means it could take several more years for FDA approval.  Just last year it was given the green light for FDA fast track status.  The science behind IMETELSTAT has the possibility of being applicable in targeting 90% of cancers and will hopefully be used to combat solid tumors as well.  Please read the data review from this year’s ASH symposium on Dec 2^nd and 3^rd that I have provided in the link below:

https://seekingalpha.com/article/4227473-geron-corporation-gern-investor-presentation-slideshow?dr=1

I am in no way a doctor or medical practitioner and under the terms and conditions of the message board I cannot directly mention doctors who are partaking in upcoming P3 trials.  I urge anyone interested to do all the research you can.  With Compassionate Use and the new “Right To Try” law new doors are being opened for those whose options are limited.  I know you are facing an uphill battle and as someone who lost a loved one to various sarcomas, I wanted to pass along my story and this much needed information in your direction so it hopefully helps.  Best of luck to you all and never give up hope!!

Keith

 

 

Chuck Z

MDS and Imetelstat Inhibitor

That was a beautifull story about your friend. But as far as Imetelstat and MDS patients. It should be pointed out that it is only being tested on those people who are at low and intermediate risk. Not for those who are at a high risk for developing AML.

                         Chuck

 

kmall

Chuck Z said:

MDS and Imetelstat Inhibitor

That was a beautifull story about your friend. But as far as Imetelstat and MDS patients. It should be pointed out that it is only being tested on those people who are at low and intermediate risk. Not for those who are at a high risk for developing AML.

                         Chuck

 

Thanks for the feedback!

Thanks for your feedback Chuck. As I stated I am in no way a medical practiconer. I stumbled upon Imetelstat by chance a few years after Matt passed away.  In his case once the cancer had spread to his blood and bones it was the beginning of his end.  I'm not sure what type he had.  I do remember the day he told me it had spread into his bones.  With that said I undertand that it is still under development as I stated it had just finished P2.  I did reach out to the FDA directly as well sfter ASH 2018 data was released and was given a very detailed response with the acknowledgement of Imetelstat moving into P3.  It should also be noted that I do know the patients eneterd into the P2 trial were intermediate - 2 or High risk (MF) patients who are relapsed or refractory to Jakinhibitor.  Again perhaps you are more knowledgeable in this arena than I, but the world renowned Doctors who reviewed the data from ASH 2018 were very excited about the results and possibilities going forward.  They even mentioned this being used as frontline treatment which could be a real game changer as far as MDS and MF are concerned.  One even went so far as to use the term disease modification.  The P2 trial was also just extended for those patients still under treatment which would mean they have an MOS of 30+ months.  On December 19. 2018 the FDA cited new trial changes in cancer treatment with MOS as a primary endpoint.  Here is that link if you are unaware:

https://www.fda.gov/downloads/Drugs/Guidances/ucm071590.pdf

If this information helps just one person on this board then I am happy to have passed it along. More importantly is even if this doesn't, I encourage any one facing these challenges to seek out as much information as possible on their own and be their own advocate.  I didn't want to go into much detail about it but there were numerous instances during the course of Matt's treatment, and he was at Sloan Kettering in NYC - one of the most "prestigious" facilities in the world - where the ball was "dropped" for lack of a better term - where CAT scans and MRI's weren't scheduled properly (among other issues) that can have dire consequences when having a potential terminal illness.  In his case it could have made a difference.  With Imetelstat and P3 gearing up for global recruitment if I were a patient with limited options I would love to have the knowledge of this first hand and decide for myself if it was a possibility.  I can't thank the CSN team enough for allowing me to share my story and hopefully impart a sense of hope for any one going through a life altering disease.  Be it Imetelstat or any other drug under development the future is getting brighter for those who are in this situation.  All the best to you and thank you again for your input!  Keith