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:

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:


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.


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.


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 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.

Friday, May 9, 2014

The New Normal Can Be Pretty Normal

I think this last week is the first one in which being a transplant patient just didn't come up. Yeah, I got asked about how I was doing. I have a lot of friends who care about me, but I had to say, "I haven't thought about it."

I take my pills every day, though I hope for them to be reduced drastically on my next visit to Vanderbilt (in July). They are a reminder that something very difficult happened to my body. I still can't run very well. My sprint is a joke, and a quarter mile would be a long jog.

My feet are getting better, though. They burn, tingle and feel numb much less than they did a few months ago. My stem cell transplant doctor tells me that's because we're reducing the steroids.

Otherwise, I just go about my life. Every now and then I have a day where everything is difficult. I don't want to get out of bed, and everything I do is like slogging through swamp. Usually, I just cancel those days and hang out in bed. Nothing fixes it.

Those days are few and far between, though they do happen once or twice a month. It's only been two or three weeks since the last one. Nonetheless, nothing about my bout with leukemia (and especially the stem cell transplant, which was by far the hardest thing) has affected me enough for me to think about leukemia over this last week.

The burning in my feet kept the reminder alive for the last few months, but though they burn some now, and they swell if I sit too much, it's so minor now that I don't think about it. I have to sleep close to 8 hours for the swelling to go away, but that's a habit now.

Best of all, the exercise I try to do every day is finally working! I do odd body-weight exercises because I'm so weak compared to my pre-leukemia days, but now I'm progressing to more normal exercises (like pushups). I can carry groceries in without gasping for breath because of the exertion. I pick things up and move them around like I'm an adult male.

Actually, the strength part was pretty good in the last part of 2013, too. Pneumonia in January of this year sapped an incredible amount of muscle from me, especially considering I was only down for about two weeks. It's May, and I've finally got all my strength back that I had in December.

I work all day without thinking much about it, although many leukemia survivors, especially transplant recipients, never return to full-time work.

I am two years and four months past transplant, and I got a serious preparation for that transplant. I used up my radiation allotment for my whole life. If I ever get prostate cancer, like a lot of men do, there will be no radiation option for me. Radiation worked excellently for my dad. The surgery sounds pretty unpleasant, so my plan is to avoid prostate cancer.

Here I am, though. I'm kickin', everything seems to be working in my body, and I like the new norm. Physically, it's not much worse than the old norm, and in peace and wisdom, I am far ahead of where I would have been without that wonderful intermission in my life we call leukemia therapy.

I'll quit now. For the record, this is written for BPDCN and acute leukemia patients who are still going through treatment and wondering what they have to look forward to. Fight the good fight! Do everything right! You can come out on the other side of this much wiser and only somewhat beat up physically.

Sunday, February 16, 2014

Exercise: We Can Do This!

The 30-degree weather seems to have moved on. It feels like a warm, summer day, but the high 50's temperatures today are actually just average for February in west Tennessee.

I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.

Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.

So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.


I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.


I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.

I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.

Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!

Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."

I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."

One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.

Here's to a slightly less stimulated appetite and less muscle-eating steroids.

Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.

This sounds like complaining, doesn't it?

I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.

I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.

I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.

I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.

I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.

I may have been guilty of feeling sorry for myself at that moment.

Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.

I have not suffered, at least not much.

To Fellow BPDCN Patients or Survivors

Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.

I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.

So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a  week, but it is not dangerous.

Well worth it to save a life.