Happy 71st Birthday Mom – Inspirational Patient Role Model and Immunotherapy Pioneer

Some posts are closer to my heart than others.  This one is very close – it shows what made me the patient-scientist-advocate I am today… and it comes down to Mom.

My Mom and I were abnormally close – so much so, I could have been called a “Mamma’s Boy” in my younger years.  In fact I was called that (on more than one occasion) but it didn’t bother me because I knew it was true.  I was close to my Mom.  I think she was a big reason I felt homesick at times during early college even though I certainly loved living in Ann Arbor – it just never felt like home without her.

My first real “adult” transition in life was when I moved alone to upstate New York after college to enter a Ph.D. program in “Medicinal Chemistry”  For those of you that don’t know (i.e. almost everyone reading this blog), a “Medicinal Chemist” is the type of scientist that designs/discovers/makes the “active ingredient” in medicines – i.e. the part of the pill that does the work!  I had wanted to go into drug discovery since high school.  This was really driven by seeing a number of people stricken by the horrible disease cancer.  Even as a kid, cancer really pissed me off.  I wanted to stop it from hurting people.

Originally I had wanted to be a doctor but I tended to faint at the sight of blood and I hated dissecting animals.  Those seemed to be impediments to medical school ha, so I switched to a drug discovery career plan instead.  Luckily I had a love of all forms of science, including both biology & chemistry – which set me up to be a chemistry and molecular biology dual major in college. As you might guess, medicinal chemistry is a field at the exact intersection of chemistry and biology, so things lined up nicely.  Of course, the very first visitor to my new “adult” (grad school) solo apartment was Mom.  We had a blast on that visit.

I focused on cancer therapy research in graduate school and Mom focused on being Mom.  Even though I lived >6 hours away, I still saw her and my Dad quite often – every month or two.  I remember excitedly telling her during a summer visit back home in 1998 about a major breakthrough in the lab on a cancer project I was working on.  I think she was both excited and proud as I tried to explain to her the science behind it in layman’s terms.  That summer vacation with my Mom & the rest of my family (and dog KD!) in my hometown on the shores of Lake Michigan was incredibly fun.

That was in the summer of 1998, my how life can change in a blink of an eye.

March 17, 1999

I was finishing up an experiment in the lab when the shared lab phone rang (no grad student cell phones yet).  A co-worker yelled to me that it was my Mom. She had gone in for a minor surgery earlier in the day.  I figured she was calling to tell me she was going home.  Instead she was calling to tell me she had pancreatic cancer.  This was a complete surprise that was noticed during her “minor surgery”.  We both knew what the words “pancreatic cancer” meant.  We both knew the widely cited statistics at the time: Six months.  Left to live.  She was only 54 years old.

I immediately dropped everything and drove home to be with my Mom.  I was worried about how she was coping.  Was she crying, depressed, panicked?  I certainly was.   I didn’t know what to expect.  They didn’t cover “surprise Mom 6-month-life expectancy” in Grad School.

I am often asked, where did I get my optimistic, hopeful and at times even joyous approach to being a cancer patient?  Well a picture tells a thousand words – see two examples below.  This is Mom shortly after her surprise diagnosis.  Mom is the woman with dark hair, the other woman is her close friend Kathye.  The party napkin is what she showed me minutes after I walked in the door. I have kept it for >16 years.

1999_Mom and Kathye after Pancreatic Cancer Diagnosis 1999_Mom_This Woman Deserves a Party

This is how Mom approached her cancer diagnosis & potential 6-month prognosis – with as much vitality, zest and humor as her physical health allowed!  Of course she had her dark times, we all do, but they were normally an exception and not the rule.

She is my fellow-patient role model each and every day.

After we made a whirlwind trip to the Mayo Clinic to attempt a (failed) surgical cure – Mom and I looked at each other.  In 1999 there wasn’t even a chemotherapy option for pancreatic cancer.  That is how bad the situation was.  A relatively mild form of chemo “gemcitabine” was given to patients.  It didn’t improve the 6-month survival stats but it was “palliative” i.e. it made some patients feel better by slightly reducing the size of their tumors.

You know you are in trouble when you’re told you have 6 months to live but that you could take chemo to “feel better”.  How did Mom approach this?  She was shaken like anyone would have been but she had an incredible strength (I believe buoyed by her strong Faith), fighting spirit and zest for life.  She wanted to fight.  But how?  She and I talked about general strategies and she was convinced that she wanted to do a clinical trial. She asked if “Dr. Tom” could help find one for her (her small town oncologist was useless for this task…).

People that know me in recent years know how deeply embedded I am in the clinical trial world.  This was how that all started.  Not with a bang… nor a whimper… but with the sound of a just graduated grad student’s telephone modem dialing up AOL to access the brand new wild frontier of the web. Remember, it was 1999.

aol2

I searched for clinical trials close to Michigan (where my sister lived) or San Diego (where I was moving).  Mom’s physical health was already starting to deteriorate a bit, so looking at the found experimental drugs’ mechanisms of action… in addition to “possible” activity, side effects were very much on our mind.  Pancreatic cancer is very aggressive and she had no interest in enduring significant side-effects from a study drug to gain (if lucky) e.g. 1 extra month of life…

Something in Los Angeles really caught our eye however… near enough to San Diego to do.  It was a very small, research oncologist led trial (14 planned patients) of a new way to fight pancreatic cancer, using the immune system.  Yes – it was an early cancer immunotherapy trial.  These are all the rage in 2015 – but in the 1990’s they were on the fringes, especially for solid tumors like pancreatic cancer.  I explained to Mom the details of how it was hoped to work.  She looked at me and said “I think I should go for it – what do you think?”  I said I thought she should go for it too.

Most of you who knew Mom probably had no idea that as a side-story to her life, she was one of the cancer immunotherapy pioneer patients in clinical trials.

What was the trial?  Well due to the wonders of the net, you can still see it here: NCT00002773 “Vaccine Therapy, Chemotherapy, and GM-CSF in Treating Patients With Advanced Pancreatic Cancer”.  How was it meant to work?  I’ll actually tell the details to make a point.  Basically the trial used pancreatic cancer cells as a therapeutic vaccine to try to train her immune system to attack her tumors.  The vaccine was incubated with interferon alpha to make it more immunogenic, i.e. attract the attention of her immune system.  Mom was given a low dose of a chemo drug called “cyclophosphamide” which,  with essentially no side effects at low dose, can kill off “regulatory T-cells” to block them from suppressing the immune system in/near tumors. She was then also given a broad immune system stimulant called “GM-CSF”.   She had no major side effects from the treatment.

What I find pretty amazing is that this protocol conceptually contained the general components successfully being explored as immunotherapies in 2015.  16 years of research since 1999 has made incredible advances by changing important details, but the concepts are the same: 1.) Make something more immunogenic to get the immune system’s attention. 2.) Remove immunosuppressors  from in/near tumors 3.) Add an immunostimulant.  In fact, there is an immunotherapy drug combination which has been named a “FDA breakthrough therapy” for pancreatic cancer due to promising signs of clinical activity in preliminary clinical trials!  One of the components of this therapy is the GVAX vaccine which contains GM-CSF and is conceptually similar to the vaccine Mom got.  It is now being dosed with another vaccine component, low dose cyclophosphamide to kill off immunosuppressive regulatory T-cells and in one treatment arm a “PD-1 inhibitor” which stimulates the immune system by releasing the brakes on it.

The details have important differences but conceptually, Mom was >15 years ahead of her time!  Not bad for a dial-up modem and a Mom-Son team trying to figure things out as they went along….

Did her 1999 immunotherapy work?  We’ll never know.  It was a small study (14 patients), there was no control arm to compare against – it wasn’t even ever published.  Mom’s life expectancy was 6 months.  She more than doubled that to live 13 months.  This could have been a coincidence but on an emotional level, I like to think that she and I made the right decision and the immunotherapy helped.   We certainly had some fun months in southern California as she lived with me and commuted up to LA for the in-patient trial every couple of weeks.  After helping my sister Anne with her end of life care, Mom died on Good Friday, 2000 at the age of 55.

Mom was born on September 13th, 1944.  Today would have been her 71st birthday.

Now you can see how Mom and her story are so incredibly intertwined with my own.  She was my first experience in figuring out clinical trials and my first exposure to the (then) unknown excitement of immunotherapies.  Care-giving for her & her death were incredible inspirations to me to further make me driven in my professional career on cancer drug research.  Most importantly, as a fellow-patient, she inspires me daily in terms of how I approach my own disease with Faith, humor, vitality, exuberance, and the guts to follow an unbeaten path while reaching for a cure.  She is a tremendous role model that I strive to live up to everyday.

 I guess I’m still a Mamma’s Boy.  Happy 71st Birthday Mom.

1999_Mom at Washington State Cancer Retreat

Note Mom enjoying a cancer patient retreat and some BIG TREES – she & I are pretty alike 🙂

20 Comments on “Happy 71st Birthday Mom – Inspirational Patient Role Model and Immunotherapy Pioneer

    • Thank you Nancy 🙂 I was a bit more nervous than normal posting this post – since it laid bare a lot of personal memories in my background (revolving around Mom) that I believe have made me the patient, scientist and patient advocate I am today. Emotionally, a tougher thing to write than an update on the latest current event… I was pretty nervous how it would be received until your comment flashed up almost immediately!

      Thank you & have a great day-
      Tom

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  1. Such a beautiful story and sweet personal memories about your mom! She and you truly are both pioneers! Thanks for sharing your heart with us today!

    Liked by 1 person

    • Thank you Cindie! 🙂 As I mentioned in the comment above, I was nervous opening up my past this much since not a standard blog post for me – the comments have made it all worth it 🙂

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  2. Your mom was the best combination of friendly, fun, quirky and kind. I always loved talking with her. On occasion (summer of college), riding my bike past your house, I stopped to chat if I saw her outside. She always acted like it was the most natural thing that I would be stopping by to say hello. She had a big heart…there was no way you could have avoided being a Mama’s Boy. 🙂

    Liked by 1 person

  3. Thank you for this beautiful tribute to your Mom on her birthday. I wish I could’ve met her–what a pioneer! I know that she is still so proud of you and the work you are doing! This post “hit me” on so many levels…really powerful.

    Liked by 1 person

  4. Thank you, ‘Mom’ and thank you, Tom for all you have done and will do to advance the fight…and to give hope, courage and inspiration to others. Tom – I pray every day for your ministry of scientific research and patient advocacy – and your health.

    Liked by 2 people

  5. Thank you so much for sharing this part of you with us all! It is so nice to get to know this side, I love to hear people’s stories but that may be because I am a psychologist haha! It is very impressive to hear that your mom was a pioneer of immunotherapy 15 years ago and it is thanks to her and others like her that we now have the hope that immunotherapy will be able to give us many more years! You are a true inspiration Tom, thank you for all that you do.

    Liked by 1 person

  6. I wish I could’ve met your Mom–she’d be getting one huge THANK YOU from me for her pioneering spirit and the advances that were made because of her case. Thank you for sharing this post, and HAPPY BIRTHDAY to Mrs. M!

    Liked by 1 person

    • I actually thought of you quite a bit Celine while writing this post. YOU are an incredible pioneer and immunotherapy clinical trial hero – that YOUR kids will proudly talk about for years to come! 🙂

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  7. Thank you for sharing such a beautiful piece about your experience with your mother. It is clear how special she was to you and it is fantastic to see you recognize her birthday and share such a personal story for all of us to appreciate. It is amazing what a phone call can do to change your life in an instant, right? Hope you are well my friend.

    Liked by 1 person

  8. Your mother was one helluva woman, Tom, in many ways, and I loved her dearly. Of the “Tessmer girls” she was the closest to my age and wasn’t above “gettin’ a little silly” when I was around…we shared a lot of laughs. You’ve done a great job of telling her story and it’s easy to see the effect she had on you. She would be (I believe IS) proud of you and what you have done.

    Liked by 1 person

  9. This is beautiful. As my husband continues his battle of stage IV colon cancer, I am grateful there are people like you being an advocate for patients. I share your mother’s birthday.

    Liked by 1 person

  10. Tom,

    Thanks for sharing this remarkable, very personal recollection of your memories with your Mom during a very trying time. It reminds us that it takes a team effort to fight this disease. It was great that your Mom had you as her advocate during her treatment and that she modeled for you a very optimistic approach to fighting this disease – and you are doing the same !

    Liked by 1 person

  11. Pingback: World in My Eyes (Favorite Posts of 2015) | AdventuresInLivingTerminallyOptimistic

  12. Tears flowing in Texas. Happy tears that you and your mom had such a close relationship, and that she inspires your work. Tears of sorrow that you lost her when she was so young. Tears of empathy because most cancer stories have one thing in common….the surprise diagnosis. One can never forget that moment. I love the napkin. I remember the dress I was wearing and the very first person I talked to (other than John) on the day we got his cancer news. I remember how foreign the word felt in my mouth as I said it. Like poison. And I remember the email I received from you which was the only source of hope John and I had. A stranger reaching out to a stranger. Keep up your work Tom. Practically the entire world is praying for you!!! (And thanks to Susan Wennerstrom, who posted above, for her roll in making our connection).

    Liked by 1 person

  13. What an incredibly moving and beautifully written tribute Tom, she sounds like she was a wonderful lady, copious tears here too!

    Liked by 1 person

  14. Tom, this blog moved me on so many levels. And I applaud your decision to share this deeply personal and moving post. Your Mom was clearly one heck of a gal and I was struck by how beautifully you wrote about how she lived, because it’s really not about how she died. And as a Mom myself, what greater comfort can we have than to know that even when we are no longer able to be with our children, they will rely on their memories of how we faced challenges, and that they will forever cherish how we enjoyed each minute and approached each day? We will still be by their side….no matter what. And we will still be parenting, and helping, and encouraging…just like your Mom! Thank you…

    Liked by 1 person

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