Skip to main content

You Want the Good News, or the Bad News?

Well, you don’t have a choice, so here’s the Good News!

When we went to Houston last week for my 8th treatment of the new immunotherapy trial drug, my doctors offered us to move to a different clinical trial (still at MD Anderson).  This trial is among the latest effort of Targeted Therapies uniquely targeting genetic mutations.  

The treatment uses Small Molecular Inhibitors (SMI) to target a gene pathway that regulates the survival of cells.  Mesothelioma has a deregulating, or abnormal pathway.  This new medicine is a blocker, like a switch, that tells the cells to stop growing and even shrink.  

We are very excited to enter this new treatment.  If you refer back to the graph I posted in the previous two blogs, you’ll see this procedure is listed in the “Experimental Treatment” column of cutting edge efforts to control Mesothelioma.  And, here’s some of the reasons we are so optimistic:
  • Unlike Chemotherapy and Immunotherapy, which are both transfusions, this trial is an oral drug.
  • Overall, this will require 8 fewer trips to Houston per year.
  • The listed side affects are less than transfusion treatments.
  • We may be able to fly to Houston for one night, not two (or more).
  • The pharmaceutical company sponsoring the trial offers some financial assistance for travelers.
This is a Phase I trial that has been running for nearly two years so there are lots of verified results even though it is a small trial.  My new doctor told us this trial is for many cancers but, “the one that seems to respond the best is Peritoneal Mesothelioma.”  That’s pretty exciting!  

Here are a few other quotes from Doctor Yap:
  • Side affects are well tolerated while on this drug.
  • Patients generally feel well while on this treatment.
  • It is a promising agent with anti-cancer affects which means prolonged shrinkage of cancer.
  • We are trying to treat Mesothelioma like Diabetes, treatable but not curable.

That last comment hit close to home.  I’ve had Type II diabetes since 2004.  I listen to my doctors and I take my medicine and I’ve never had a diabetes symptom.  I’ll take that for the next 20 years with Mesothelioma. 

The Bad News:

After all that good news this won’t sound so bad.  

Arriving in Houston for the 8th treatment involved the bi-monthly CT Scan to see how the immunotherapy drug was working.  I had been feeling so amazing for the previous few weeks that I was sure the doctor was going to say, “ Yahoo, this drug is working fantastic for you!”  

So, we were a little perplexed when they sent in young Doctor Nick, who we hadn’t met before.  He started the meeting by telling us the two measurable tumors have grown since the last scan. He continued by saying, “We need to switch gears and go to a different treatment.”  

Needless to say, the initial news was a little unnerving.  But, Doctor Nick had an amazing knack for turning things positive in a hurry.  I’m sure that’s why the sent him in first!  He and the main trial doctor had already consulted with another well known Mesothelioma doctor who recommended the new trial I’ve already described.  He told us that Phase I trials are on the leading edge of medical technology and research.

I told him I understood that this disease is treatable but not curable and all we’re looking for is long-term remission.  He said, “my goal is to give you decades, as long as you are up, healthy and active we’re gonna keep on truckin!”

Next Steps:

We have a trip scheduled to Houston for January 8-12th for baseline tests like scans, EKGs and blood tests. Then, final clearance on January 10th with the first treatment on January 11th.  After that I will take a pill everyday for two weeks, then none for two weeks (two on two off…like a slope worker!). We will return for a treatment and tests every Wednesday for 8 weeks.  I know it sounds like a lot but after that we only need to return once a month for the remainder of the treatment.  That will be such a welcome relief to our life.  

Cancer is a real wake up call.  Most of the time we like to make plans and are proud of ourselves when it works out.  I recently came across a paraphrase from The Message Bible, 2 Corinthians 4:8-9:

“We’ve been surrounded and battered by troubles, but we’re not demoralized; we’re not sure what to do, but we know that God knows what to do; we’ve been spiritually terrorized but God hasn’t left our side; we’ve been thrown down, but we haven’t broken.”

We thought our plans were cruising right along and God reminds us we are not in control, He is.  We can be encouraged that this cancer has not taken God by surprise.  He is in control and knows what we need for the battle.  

Will you continue to pray for our family that God has us right where he wants us to be?  We are so encouraged by your support and love.

To close, I’d like to say we hope you had a wonderful Christmas Day and we wish you the best in 2023.




Comments

  1. Mark and Diane, I'm reading this with excitement and encouragement even though there was some bad news. I don't see it like that. I recently saw Mark and he had really good color in his face and body. I know what it's like to fight for your life and he will overcome it to live a long and healthy life. I didn't have cancer, but I felt like my life was over when I had my heart complications and now I'm back on the courts running around again and so will he! My birthday is January 10th so that's an important date for you guys too! You will be in my thoughts... My wish will be for your positive and healthy progress. It's not everyday where you meet a set of friends that have touched your life and I'm blessed that you have been a part of mine (and Sara's). The community that we've built within pickleball and life will never be taken for granted. Moreover, we are friends for life and will conquer anything together. With lots of love for a happy holiday and more positive news in the upcoming months! Your forever friends, Steve and Sara!

    ReplyDelete
    Replies
    1. I see no bad news. God is present and has a plan. I love that and love you both!!

      Delete
  2. Thanks for the update and the beautiful Christmas photo!! Love, prayers and hugs from us in Kentucky. Cory

    ReplyDelete
  3. Well like most things you are giving it to God to get the answers. And like most things you are then explaining it to me. Ok, so we take the left road now not the right road. Got it 👍. Now let's get this ship moving❤️❤️❤️. Full steam ahead Captain Mark ❤️

    ReplyDelete
  4. Thanks for sharing your treatment plans and positive spirit! There is no doubt with this energized healthcare team, all the love and support of family and friends, and your strong faith that your progress will continue to inspire and motivate the rest of us! Hugs and prayers for you and your family, Krysta.

    ReplyDelete
  5. We only see the good news and the bad news is what brought you to this encouraging new treatment! Wishing you many blessings this upcoming year! Can’t wait for our euchre play off.

    ReplyDelete
  6. Great news is all we can see! Sounds like an overall positive update with a great pathway forward.

    ReplyDelete

Post a Comment

Popular posts from this blog

The Battle Begins

I’ve never tried to create a blog, in fact I’ve never even looked at someone else’s blog.  So, this project may start off a little slow.  My plan is to post frequently about what’s currently happening.  But, people also want to know when this started, what were my symptoms, and why did it take so long to get this diagnosis.  So I will, from time to time, create posts that will be labeled “Prologue”. That story will begin on November 19th, 2021 and I’ll add stories until I reach today’s date.  April 18th, 2022 Today I finally have a comprehensive diagnosis.  It’s not what we were hoping for but at least we can now proceed with the attack. I have Peritoneal Mesothelioma.  Most people think of Mesothelioma as a lung disease but of the 3000+ yearly cases of mesothelioma only10-15% occur in the abdomen.  The primary cause of mesothelioma is from exposure to asbestos.  Later, I will tell you the story of my time working around raw asbestos.   I would like to offer readers some advice.  It mi

Shifting Gears

"Sometimes you eat the bear, sometimes the bear eats you"                                              Preacher Roe, Brooklyn Dodgers Clinical trials seem to be a finicky process.  All year you’ve been reading about how my tumors shrunk slightly with my CT scans every two months.  However, recently there has been slight growth in each scan.  On our last visit the tumors grew again and Dr. Yap told us there is no use continuing this trial, it’s time to look for something new.   For those of you keeping score at home, that’s the second time we’ve been moved out of a trial because of growth.  As a matter of fact, the first time was almost exactly one year ago, December of 2022.  The doctor told us he considers my time in this recent trial to be a success.  That might seem counter intuitive at first considering this news, but when we really think about it, we’ve had an amazing year on this medicine.  For the most part the monthly treatment was harmless, there were no real side

Still Shrinking

“Do girls know about shrinkage?:   George Constanza  We often joke about shrinkage because my tumors continue to shrink with every CT Scan.  We return to MDAnderson every 28 days and I get a scan every other visit.  Each one has shown the tumors smaller that the scan before.  I would say, the prayers are working…we could have only dreamed the new medicine would be this effective.  God has us in the right place at the right time. The doctors have a matrix that shows my overall cancer has reduced by 19.4% in just 7 months! The last visit I had another rise in the protein in the urine.  As I’ve mentioned, this is the only side affect I have experienced.  The good news is it doesn’t manifest itself so that I feel any affects.  It’s mostly a doctor concern to protect my kidneys.  The protocol is to reduce my dosage by 50% for the next treatment.  But, as my doctor has pointed out, the dosage hasn’t affected the drug’s ability to kill my cancer.  My tumors continue to shrink regardless of th