Wednesday, December 10, 2014

Diffuse Large B-cell Lymphoma with Myc rearrangement

My pathalogy report came back from Vanderbilt today. My Diffuse Large B-cell Lymphoma (DLBCL) is positive for "Myc." The NP pronounce it "Mick." This is known as a "Myc rearrangement." I don't know what that is, but I do know—after researching today—what that means.

Like what happened with the leukemia, a Myc rearrangement attached to DLBCL had a terrible prognosis just 3 or 4 years ago. It's great now.

Apparently, back in the ancient days of 2011 and 2012, all DLBCL diagnoses were treated with a regiment called R-CHOP. The letters stand for the names of 5 chemotherapies used. Except Prednisone, which is taken as a pill, all the chemos are administered in one day, then the patient goes home for 3 weeks, and 6 rounds are given.

With that regimen, 77% of DLBCL patients with Myc rearrangement died within 4 years. Now, though, they use a regimen called EPOCH-R, which stands for 6 chemo drugs, several of them the same as R-CHOP. As a result, right now it looks like 77% are surviving. The latest study came out just day before yesterday!

My first round was R-CHOP because pathology reports weren't back yet. From now on, though, I get EPOCH-R, which will require 5 days inpatient, including 96 straight hours of infusions. Five rounds to go.

Keep in mind that a 77% chance of survival seems "epic" (pun on EPOCH) to me. With leukemia, which also had a long name and a 5-letter acronym (BPDCN, see tabs above), what I found at first was 0% (zero!) chance of survival. Fortunately, that information was 2 or 3 years old, and it turned out I had a 20-25% chance of survival. Whew, much better!

So for leukemia, I was pretty convinced God told me I wasn't going to die. My faith was shaken when I found out my odds of survival were zero. It was easier for me to believe God was in control of a 1% chance situation. Somehow the concrete "You're going to die" was more frightening.

I have no such promise this time, but the church tells me that they still need me, so I'm pretty confident God will grant their desire.

There was a Christian from around AD 200 who said, "Our goal in this life is to get out of it as fast as we can." If we give ourselves fully to God, then we can expect there to be a lot of suffering in this world. We'll be looking forward to departing and being with King Jesus, which is far better.

Some of you may not realize that's the Christian path. Philippians 1:29 tells us that we have been "granted on behalf of Christ," not only to believe in him, but to suffer for his sake. James 1 tells us to rejoice in suffering, and Romans 5 assumes we rejoice in suffering.

A long time ago, before I found out that you can't just "name it and claim it" with God, I attended charismatic churches. We all wanted to pray until our building shook, like the Bible says happened in Jerusalem (Acts 4). We wanted to pray and praise till an earthquake happened, like what happened to Paul and Silas in Acts 16.

It never happened, but I found the missing ingredient over the last 3-1/2 years. Suffering. In both those instances mentioned in the last paragraph, there was intense suffering involved. Try praying and praising when you're in agony. People take notice. Things happen.

That's truly the way to shake the earth and set the prisoners free. Mix your prayer and praise with good, strong, God-given suffering.

Thank you, Lord, for such a gift!


  1. Papa Shammah, I am so proud of you! Your attitude towards suffering is inspiring. May God continue to give you grace! I hate when you have to suffer but I love what good it is producing in you & in us. Its truly an honor to know you & your beautiful family!
    All my Love,
    Chasah Copenhaver

  2. Dearest Shammah,
    People has been touched by your Faith, by your still Praising God in your suffering, back when we first found out of your cancer and all, everything in my belief was that God would use you and your family to touch many. To help establish a Faith people can see and know. Touching Christ in your suffering for sure will move mountains in others that just wants to quit or give up . Thank you for being who you are, I love you and your family.

    1. Thank you, Kitty. Since you actually came and stayed with us, drove me around so my wife could take care of things impossible to get to while caring for me, I have been touched by your freely offered service to us. Real life service is the truest form of faith there is.

  3. Paul, we just can't seem to beat this thing. I just went through a CAR T-Cell trial, but all it did was reduce my MRD instead of getting me back to remission. My latest BMB indicates more weird stuff, so they're now looking at a DLI. Praying for you, buddy. God must have us here for a reason. He keeps letting us live! Keep fighting. Keep smiling. Joy comes from within.