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!

Tuesday, December 9, 2014

A New Cancer: Lymphoma and Faith

So I have cancer one more time.

Based on what my doctor said, it's an easier one this time. I doubt lymphoma is always less dangerous than leukemia, but in my case, it is. This is Little League compared to the Big League version of leukemia I had.

I get to face chemo at home, here in Memphis with my brothers and sisters, though the final authorities on my treatment will be the stem cell transplant team at Vanderbilt in Nashville.

How Should I React?


Hearts are tricky. We have to guard our heart because out of it come the wellsprings of life, but we cannot trust it. Without the daily exhortation of the saints, the craftiness of sin will disguise bad as good and make our hearts unmalleable.

For me, cancer has been the great revealer. Leukemia answered questions about my heart that nothing else could have. Do I believe what I teach, that it is far better to depart and be with the King, or will I shrink in terror when death comes near? As it turns out, physical death came and breathed in my face, and I smiled at him. He found nothing in me, and he went his way.

I told people that if they were faithful in the little things, that if they bit their lip when they wanted to insult, that if they gave way when they wanted to step forward, that if they eschewed glory rather than pursuing it, that all the little acts of faithfulness would give them strength for the big acts of faithfulness.

I repeated Amy Carmichael's words: "In acceptance lieth peace." I repeated Watchman Nee's teaching that the circumstances that come to us are God's chisel, molding us to fit precisely into his eternal temple.

But I had no way of knowing whether I believed those words until I was writhing in pain on a hospital bed, in honest gratefulness that I might be delivered from my soft American ways and be a soldier in God's kingdom.

So here comes the chisel again, shaping the hardness of my heart to the power of his will, making me fit into the stones that surround me in the wall of the temple of God.

Such chiseling, shaping, and smoothing does not come by prayer or discipline. It comes by troubles and suffering.

Mia Hamm, the great women's soccer player, once said that the image of a champion is not holding a trophy aloft, but bent over, gasping for breath, and drenched in sweat long after everyone else has gone home.

The picture of the faithful saint does not consist of the sweat of labor, but of songs through tears and cries of praise in the midst of groaning. It is joy in suffering, and as Paul and Silas proved, that joy and those songs shake the earth and set the captives free.

We don't have to make the best of the suffering that comes our way. It already is the best. We just need to embrace it.

"May all who come behind us find us faithful."—Steve Green.

If the following video doesn't load for you, listen on YouTube.

Sunday, August 24, 2014

SL-401 Study for BPDCN and AML Patients

Honestly, I don't understand SL-401 treatment that well, but I know it has worked at least a couple times for those with no other hope. It's a promising new treatment.

Now Stemline Therapeutics has announced a study of SL-401 for BPDCN (Blastic Plasmacytoid Dendritic Cell Neoplasm) and AML (Acute Myeloid Leukemia) patients. The announcement is here:

http://www.marketwatch.com/story/stemline-therapeutics-announces-opening-of-sl-401-corporate-ind-and-start-of-clinical-trials-in-bpdcn-and-aml-2014-07-28

You might want to ask your doctor about it if your treatment is failing, if you have relapsed, or if you are not eligible for a bone marrow transplant.

Thursday, August 14, 2014

Update on the New Norm

2.5 years post-transplant, here's my recovery status:

Medicines

I had a lot of acute GVH of the skin, and almost no other GVH. They say to avoid rash on over 50% of your body, but I was regularly over that. The rash was red, had bumps, but only itched a little. It did not hurt.

To get rid of it, we had to go up to 30mg of Prednisone, a steroid, in the summer of 2013. We've been easing down ever since. Because I had pneumonia in January, 2014, the doctors have been more aggressive in trying to reduce my immunosuppressives.

As a result, I am now at 7.5 mg of Prednisone and a half gram of Tacrolimus (ProGraf). The doctors dropped my antifungal (Voriconazole, and used to be Fluconazole) at the last appointment, July 25. They said that would reduce the immunosuppressive effect of the ProGraf, which is already at an amount they call minimal.

I still take an antibiotic and antiviral every day as a backup because of the mild immunosuppression. I also take Bactrim (another antibiotic) three times a week to prevent pneumonia. Obviously, that didn't work, but I'm still taking it.

Health

I have been on Coumadin (Warfarin), a blood thinner for almost a year because I had my third post-transplant blood clot last fall. It's also the third blood clot of my life. Those can be painful.

Throughout 2013, and maybe some of 2012, I had some tingling, numbness, and pain (neuropathy?)  in my feet. It got worse throughout 2013, then was steady in 2014 until April. In April, my ProGraf was dropped in half to the 500 mg I take now. My feet began improving immediately, and my blood thinned to an almost dangerous level over the next couple weeks. We had to lower the amount of Coumadin I was taking.

I think the ProGraf was thickening my blood, causing the clots when I didn't take Coumadin, and combatting the Coumadin when I did. Dropping the ProGraf made the Coumadin work much better.

We dropped the Prednisone again 7/25, and now, just 3 weeks later, I have no feet problems. They feel great, and I am back to walking and even running some. I love it, though the year of foot pain that was increased by walking has left me weaker and less motivated.

I am pressing through anyway.

I am also getting stronger faster than I was. Yay! I'm still not back to my old average strength self, but I'm close.

I did a plank (pushup position but with elbows on the floor rather than hands) and held it for 90 seconds the other night. That's pretty good for an old guy like me. The sad part is that I can't blame my potgut on weak stomach muscles. I am just fat.

Only 20 pounds to lose, though.

Chronic Fatigue Syndrome

After 2012 (transplant performed 1/17/2012, very thorough preparation, including radiation, full body and brain), my problems with fatigue were much better. Really, I was doing somewhat okay even 6 months post-transplant, in summer of 2012.

I'd say throughout 2013 I had what I call "fatigue days" almost weekly, maybe every two weeks. I dragged, and trying to exercise just made it worse. On those days I had no appetite, and usually me energy and appetite both returned at the same time.

The fatigue days still happen, but more rarely, and often I can point to a cause, somewhere that I've overdone it physicall or mentally.

I can work 40 hours per week at a desk with no problem.

I own a distribution business. We moved our warehouse between Christmas and New Years, Dec. 25-30, 2014. On one of the first days I helped load pallet racks for three hours, pulling 10 pound to 30 pound boxes off pallets and handing them to someone else to put on shelves. I was very proud of myself.

I was useless the rest of the week. I definitely could not do an active job like that for more than 10 hours per week. Of course, I'm 53, and I haven't been able to exercise like a healthy person for three years now. Now that my feet are better and I'm responding to exercise better, that may change.

Eye GVH

I still have the occassional attack of eye GVH, but I no longer need any medication to treat it. I started expressing oil from my eyelids, and that has eliminated all suffering from GVH of the eye.

Dry Eye Zone expresses concerns about my method. It has staved off GVH to the point that my eye doctor said my eyes are fine and that I don't need to see her anymore. Therefore, I am going to continue, but I can't recommend that to you, anyway. The warm compresses suggested on that site are surely a better idea, anyway.

Okay, thanks! This update was mostly to provide a comparison for others of you wondering if you're ever going to get better.



Wednesday, July 23, 2014

Marrow Donors and Transplants

I haven't posted on here in a long time. There are some leftover issues, of course, but leukemia/BPDCN is pretty much in the past for me now. My "new normal" is a whole lot like my old one except that I'm slower and can't run very far.

Anyway, some asked me about being a marrow donor, and this discussion of bone marrow or stem cell donation seemed pretty informative, so I'm posting it here, too, just in case you find it helpful.



How to Donate Marrow

Just go to marrow.org and sign up. They will mail you a donor package with lots of information. You swab your cheek, put it in, uh, something they sent you, and you send it back. That's enough to find out if you _might_ be a match. That's it. The likelihood they'll call you is pretty slim. If they do, then they'll want blood to check your DNA for 10-14 genetic factors. If you're an exact match, or really close, and you're the only one, they'll call you. Giving marrow is, literally, a real pain in the butt for about a week. "Feels like a mule kicked you in the backside," I was told. Nowadays, they usually take stem cells. They give you medicine for a week that makes your marrow run wild and its stem cells pour into your bloodstream. Your bones ache for a week, and then they take the stem cells out with a machine very similar to a dialysis machine, the ache goes away, and you go home.

That's the whole process, but only 1 in 500 people who sign up are called on as donors. It takes that much to find "the match." So, for the most part, your action is just to order the kit and send in the swab. Easy.

I know of someone who had 50 people come up on the list as potential donors. Only 3 turned out after blood tests to both be willing and to be a good match. One turned out to be a perfect match.

For me, they found 3 potentials in the whole world and none of them were a workable match after blood tests. My brothers were a complete mismatch, and my sister was the lowest acceptable match. Fortunately, nowadays women donate their placentas and cord (at some hospitals) and cord blood doesn't have to match near as well as adult blood. I got cord blood, which is usually not preferred, but for someone as harshly prepped as I was, the immature baby immune system that those  stem cells created in me turned out to be a blessing. It's not as strong as an adult transplant, so it kept me a little safer.

Is this TMI? This process is amazing to me. Some people really need an adult transplant because the new immune system has to go in and destroy any lurking cancer cells. They thought I was healthy enough and had a good enough attitude that they would just use a scorched earth policy on every possible hiding place they could think of. The baby immune system didn't have anything left to clean up.

Sometimes there is a battle between what is left of the patient's marrow and the donor marrow. I have a friend almost three years after transplant who still has 2% of his own old marrow. Not me. I was 100% donor the first time they checked because they did an excellent job getting my marrow to 0% even before the transplant.