17 Months after Bone Marrow Transplant, GVH, and Recovery

It seemed like a good idea to give an update on recovery.

I am almost back to full strength. I work out most days trying to achieve that. I still can't do a pullup, but I can do 20 decent pushups, and 13 or 14 excellent ones. I can press 65 pounds overheard 10 times. I used to be able to do 75 pounds for 15 reps. I was pretty average strength before leukemia. I was hoping maybe the baby's blood system I received might make me suddenly prone to great strength, but it doesn't look like it. It's taken over a year to get to doing 20 pushups!

Of course, last May I could barely hold myself in a pushup position, so I guess that's not terrible.

I ran a mile straight without stopping last week. That was a great achievement for me, a real "mile"-stone, my wife called it. (Funny girl.)

It took 13:56, which is really slow. On a treadmill, it would have been a 4.3 speed on a treadmill. A real fast walker could have kept up with me. Still, it was hard, very hard.

But I did it.

So I waited a couple days to give myself a rest from my "marathon," and then I tried one time around our warehouse at work, which is about 1/5 of a mile (not a standard distance at all). I was just hoping to get around the warehouse in 2:15, but I just took off at what seemed a pretty fast running speed and hoped for the best.

Halfway around the building, which took about 45 seconds, I still felt great. I couldn't believe it! 3/4 of the way around the building, it was a huge chore to keep running, and my pace slowed terribly. I'm sure I looked like I only had partial control of my body. So I slowed to my mile jogging pace I'd used a couple days before and sort of shuffled to the end.

One minute and forty-eight seconds!!! Whoo hoo!

That's 9:00/mile. In fact, since it's really a bit more than 1/5 of a mile, it's less than a 9:00 pace. That's a decent jogging pace, not a run, for a 51-year-old that's in shape. Six years ago, I could run 8 miles at that pace. Today, I can only do 1/40th of that distance, but I was THRILLED.

GVH & Medication

GVH is Graft-vs-Host disease. I should have a tab at the top of the page with the others for what that is instead of defining it over and over again. If you're still reading this, you probably already know what it is. If not, stay tuned, and within the next week, I'll do a GVH page for this blog.

I've had an ongoing skin rash that has varied in strength. My doctors, and the doctors at the Bone Marrow Transplant Information Conference that I went to in Costa Mesa, CA in April, told me that my rash is acute GVH of the skin. It used to be that if you had a skin rash due to GVH more than 100 days after transplant, they called it "chronic." Before 100 days, it's called acute, and it's considered more dangerous, but less likely to be continue. Chronic is less aggressive, but it's more likely to linger.

Mine, however, is still acute, a year and a half after transplant.

I have no idea whether that matters much.

I do know that either way, the doctors play with an immune suppressor like Tacrolimus and a steroid, like Prednisone, that works differently than the Tacro, but also suppresses the immune system. My rash had gotten bad enough that in April, they had doubled my Tacrolimus dose and increased my Prednisone to 30 mg, even though they thought the 20 mg I was taken were not good for me.

We also use a steroid cream called Triamcilone 2-3 times per day over my whole body. We started that regimen early in April, and it took the whole month to get the rash under control. Usually, when they try increasing my steroids, we can get everything cleared up except my forearms and lower legs, and my lower legs are much worse than my forearms. In late April, I added another treatment, which I am not ready to reveal yet, and my lower legs cleared up as well. We were thrilled!

So this month, on May 3, they dropped my Tacro back to 1 mg and had me drop to 25 mg of Prednisone. I was very diligent with the Triamcilone cream, and after a week. I was still clear. A week ago, they had me drop to 20mg of Prednisone, and the rash came back lightly on my lower legs. We were still thrilled it wasn't progressing, and in the last couple days, it cleared up again!

I am, however, facing some gut issues the last couple days, with a lot of bowel movements, though no diarrhea. Today, my stomach added a lot of burping that doesn't smell very good. In fact, I was driving my kids to town this evening, and when I burped, we had to roll down the windows to blow the smell out.

That could be GVH, too. I wrote to Vanderbilt using "My Health at Vanderbilt" online, which puts my emails right into my medical record, but they won't look at that until Monday. If it becomes an emergency, I have to call to get them on weekends.

GVH of the Eyes

I didn't get any GVH of the eyes until November or December (10 months out from transplant). It was pretty bad for a while, but it seems to have mostly subsided. I wrote a blog telling about pressing on the inner corner of my eye to relieve the GVH attacks. It's still working, and basically I hardly ever have one now. I can drive without sunglasses, read, watch a movie, and type on the computer without problems. I'm still pretty sensitive to wind or a fan blowing, and I had one GVH attack initiated instantaneously by a sudden bright light a couple days ago. Pressing the corner of my eye got it under control, though.

The Future

During the treatment for leukemia, things were pretty difficult most of the time, so it was all pretty interesting in and of itself. It was easy to find things to make jokes about, so it was easy to keep the blog an enjoyable read. This post was a bit more difficult. I wrote this for the sake of others going through the same thing I am so they can compare progress and maybe be encouraged that things that seem to go on and on can actually come to an end. I know I was wondering about the rash on my lower legs.

Maybe in a future post I can tell you the kind of days I have, being a workaholic, swamped father, husband, and Chrisitan teacher, while trying at the same time to be a peaceful, praying man who lives by the Spirit of God. There's still plenty of humor in that pursuit!

Maybe even some encouragement.

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Study

I learned from an email that Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) is also called Plasmacytoid Dendritic Cell Leukemia (PDCL). It's been called a lot of things in the past, including Blastic Natural Killer Cell Lymphoma, which is a pretty cool name for a very "uncool" disease.

Anyway, I wanted to summarize a study published about 6 months ago, on November 30, 2012. It was published online at that time, then published in Blood Journal on Jan. 8, 2013. You can read the whole study on that link.

Thank you to Michael Oldtree for posting the link on rareshare.org for other BPDCN patients.

Basically, Damien Roos-Weil et al analyzed 34 BPDCN patients who had received stem cell/bone marrow transplants from a sibling or unrelated donor.

The blood cells. The cell that stopped maturing, then multiplied uncontrollably, determines the type of leukemia. Notice the difference between Myeloid and Lymphoid cells, which makes the difference between Myeloid and Lymphoid Leukemias. The Plasmacytoid Dendritic Cell is a myeloid cell, which may be why BPDCN is treated like AML.

Here's the results, short and simple:

1. This was an analysis of treatment results, not a study where the researchers treated the patients themselves.
2. Ages were between 10 and 70 years old.
3. They separated the patients into two groups, those under 42 and those over 42.
4. There was no significant difference in survival rates between the older and younger group.
5. The sample size was only 34 people. The disease is quite rare, and there have only been about 200 cases ever.
6. The disease-free survival rate at 28 months was 50% for those that received a full-strength preparatory regimen.^*
7. All of those who received a reduced intensity preparatory regimen died of complications or relapse.^*

^*A full-strength preparatory regimen, by the study standards, was at least 8 Gy of radiation and at least 10 mg/kg of bisulfan or 150 mg/m2 of melphalan. Anyone who gets a bone marrow/stem cell transplant is told whether they are receiving full-strength (myeloablative) or reduced intensity (non-myeloablative) conditioning.

Discussion of Results

The encouraging thing in this study is that BPDCN, that used to be known as having a 0% survival rate may possible have a 50% survival rate, if the patient is healthy enough to withstand a myeloablative marrow transplant.

The discouraging thing is reading that none of the patients they looked at who received reduced-intensity conditioning survived. They all died of relapse or complications. The sample-size for the reduced-intensity patients was very small (10, I think).

The study calls for more research on the ability of the new immune system (a new immune system is one product of a marrow transplant) to destroy any leftover leukemia and prevent relapse. This is called Graft-vs.-Leukemia, and they would study this by examining relapse rates for patients who received non-myeloablative conditioning. They would also study the relapse rates for all transplant recipients based on how much Graft-vs.-Host they experienced.

Graft-vs.-Host means that the new immune system is attacking the patient's body, which happens pretty often because the immune system and the patient's body have different DNA. (Yeah, the DNA of my blood is different than the DNA of my skin.) GVH is a bad thing in one sense, but it's also a good thing in most types of leukemia. An immune system that is aggressive like that is more likely to find and destroy any leftover leukemia cells that managed to survive the chemo and (sometimes) radiation used to prepare the patient for transplant. Thus, the relapse rate among leukemia patients in general is lower for patients that experience a small amount of GVH. A large amount of GVH is life-threatening, and dying is no good way to prevent relapse!

This study is saying, however, that they don't have evidence that Graft-vs.-Leukemia is effective in BPDCN patients, though they don't have a big enough sample size to confirm ineffectiveness. And that is a question we really need to answer! There is no sense putting patients through non-myeloablative transplants if they are not going to be effective. Of course, how are we going to find out if we don't try. Usually, non-myeloablative transplants are only used on older or weaker patients who might be killed by full-intensity regimens.

One final note: I'm not actually a BPDCN patient. I was diagnosed with BPDCN by a lab in California. The lab at Vanderbilt Cancer Center, however, was not willing to confirm the diagnosis. They could not come up with an alternative, either. They ended up calling my leukemia "undifferentiated," which means, in my case, they really didn't know what it was. They treated it like they would BPDCN, which means that I got a chemotherapy designed for Acute Myeloid Leukemia (AML) and a fully myeloablative marrow transplant was required as soon as I got into remission. Waiting any longer than 6 to 9 months would have just about guaranteed a drug-resistant relapse that would prove fatal. (Due to complications, we had to wait 6 months, and everyone was in a hurry at that point.)

News on Progress with T-Cells Against Leukemia/Multiple Myeloma

The article is here:

Souped-Up Immune Cells Force Leukemia into Remission

Note: There is a YouTube video explaining the same story linked in Todd's comment below.

Scientists are working miracles with T-cells, and some of it is thanks to the HIV virus. AIDS, as you know, is an immune deficiency. It is caused by a virus that attacks T-cells, a major part of our immune system.

Scientists have captured the HIV virus, and they have made a slave of it. Viruses are how scientists got DNA into cells. We can't really put genes into DNA on our own, but putting genes in DNA is how viruses work. So scientists have disabled the HIV virus so it is not dangerous, but it can still weasel its way into T-cells. Viruses are almost nothing but snippets of DNA (it's questioned whether they qualify as "life"), and scientists add some DNA to the virus, then let the virus carry it into the cell.

If you want to fully understand the illustration below, you can read the following incomprehensible paragraphs. I thought, though, that we all might be able to understand the illustration a little just from the title of the extract.

"Schematic Representation of the Key Structural Features of SIV and HIV-1 Entry into T Cells"

(A) Different stages of viral entry from budding, to maturation, to entry claw formation. For the SIV strain used here, viruses that are docked to the cell via an entry claw show very few, if any, viral spikes on their surface, whereas non-contacting viruses typically display between 60 and 100 spikes on their surface. The entry claw is composed of between five to seven anchors spanning the region between the virus and the cell, each ∼100 Å long, and spaced laterally by ∼150 Å.

(B and C) Two alternative models for viral entry. In the global fusion model (B), the formation of the entry claw is followed by progressive fusion of the viral membrane across its width, leading to merger of the contents of the viral membrane with the cellular membrane. In the local fusion model (C), the formation of the entry claw is followed by the creation of a local pore centered at one of the rods, leading to delivery of the viral core into the cell."

By Rachid Sougrat, Alberto Bartesaghi, Jeffrey D. Lifson, Adam E. Bennett, Julian W. Bess, Daniel J. Zabransky, Sriram Subramaniam [CC-BY-2.5 (http://creativecommons.org/licenses/by/2.5)], via Wikimedia Commons

As far as what I've read, scientists have been able to do two things with the HIV virus. In patients with Chronic Lymphoid Leukemia that would not respond to any conventional treatment, they engineered the patients T-cells to kill B-cells, which are another immune system cell. In these CLL patients, though, the B-cells are the ones that became cancerous, so when the T-cells killed the B-cells, they also cured the cancer.

The side effect is pretty major. Those patients will never have B-cells again, and they require immunoglobin injections to help boost their immune system. Nonetheless, their immune systems will be weak forever.

In the article above, the patients were Multiple Myeloma patients (related to leukemia because it is a blood cancer, but it is not leukemia despite the incorrect title of the article), and scientists engineered the T-cells to target the specific cancer cell causing the MM. They had some success putting the patients in remission, but since standard therapy was also being used, the power of the T-cell therapy is still unknown.

As an aside, Christian singer Carman Licciardello, who just goes by Carman on his albums, was recently diagnosed with Multiple Myeloma. They told him his MM is incurable and that he'll die in 3 to 4 years. The article above applies directly to him.

GVH of the Eyes

I'm just sharing a very odd—in my opinion—remedy for GVH of the eyes.

*GVH is Graft-versus-Host disease, which happens to bone marrow transplant recipients. It is explained at end of this post.

My ophthalmologist gave me a steroid drop to use on my eyes when I get a GVH attack, but the steroid drop is not the remedy. Instead, the instructions for applying the steroid drop are the remedy. Those instructions work even when I don't put the steroid drop in.

The instructions tell me to pull down my lower eyelid, put a drop in the pouch that forms, then close my eyes and put pressure in the inner corner of the eyes for about two minutes.

One day, I was getting out of the car at a gas station, and a gust of air blew across my eyes and instantly my immune system went on the attack. When that happens, the pain is too bad for me to open my eyes, which means driving away from the gas station would have been impossible and pumping gas would have been extremely difficult. Since it can take from 15 minutes to 2 hours for a GVH attack to subside, this was a problem.

I sat back down on the front seat with the front door open, and I put my fingers on the inner corners of my eyes. The pressure was pretty uncomfortable, and I couldn't keep my fingers in one spot because my eyes were already soaking wet from tears. I had a couple napkins in the glove compartment, so I grabbed one, and I used it to apply the pressure.

From the moment I started pushing on the inner corners of my eyes, I could feel the relief start. I think I ended up pressing on my eyes like that for 2 or 3 minutes, and the GVH attack was over.

My eyes were still sensitive, so I slapped on some wraparound sunglasses before I pumped the gas. After I was done, I used the napkin to apply pressure again, and it helped relieve the sensitivity a bit.

I have tried this method numerous times since, and it has been at least moderately effective every time, often completely effective. I have begun applying pressure to the inner corners of my eye for a minute or so a couple times a day, just for prophylactic (preventive) purposes.

Some Explanation of the difficulty of relieving GVH

GVH, or Graft-vs-Host, is an attack from the immune system when your immune system has been replaced with the rest of your blood as a result of a bone marrow transplant. Bone marrow transplants are generally done only on Leukemia, Lymphoma, and Multiple Myeloma patients—in other words, people with blood cancers.

A GVH attack on the eyes is not like having something in your eye. If you get a speck in your eye, once you remove it, the pain subsides immediately. GVH means your immune system is attacking the eye. It is not enough to remove whatever irritated your eyes and spurred the immune system attack. The pain will not go away until you get the immune system to stop attacking. Getting rid of the irritation helps make that happen, but, at least for me, it's hard to say how long it will take for the immune system to back off. Like I said, it can take up to two hours.

During those two hours, the pain is not too bad if I keep my eyes closed. The tears keep running, but otherwise it's pretty bearable. If I open my eyes, however, the pain rapidly increases so that I can't keep them open for longer than 3 or 4 seconds.

Before I found this remedy, I would usually just go take a nap if the attack doesn't stop in ten minutes.

A Possible Explanation for Why This Remedy Works

I just went to a Bone Marrow Transplant Information Conference in Costa Mesa, CA a couple weeks ago. I asked why pressing on the inside corner of the eyes might help shut down a GVH attack, and the ophthalmologists doing the GVH of the Eyes seminar didn't have an answer. They told me that I was surely blocking the canals that drain the tears to the back of the nose, but that really didn't explain the effectiveness I was experiencing.

One doctor suggested I find out what magic was in my index fingers and market it.

That's funny, but the fact is, it works for me. (If you suffer from GVH of the eyes, please try this and tell me if it works for you.)

Earlier in the presentation, however, the doctors had answered a question that might explain my remedy better than just blocking the tear drain canal.

Apparently, we need not only the tears our eyes produce, but also need an oil coating produced by glands in our eyelids. One man there had been told by his doctor to close his eyes and press on his eyelids to express the oil from those glands. The doctor explained that GVH can beat up on those oil glands enough that they are not as soft as they should be, and the oil can't get out of them.

The doctor at the conference confirmed this is a good idea, and he said that a warm compress can do the same thing by thinning the oil and relaxing the glands.

So I wondered if maybe I'm not just blocking the canal that drains the tears in my eyes, but that I'm also expressing oil onto the eyes when I press like that. Maybe my GVH problem is not just dry eyes from lack of tears, though I do produce only 30% (left eye) to 50% (right eye) of the tears I'm supposed to produce. Maybe, however, with more oil, which helps the tears coat the eye, my cornea is being taken care of well enough.

Loose Thoughts on the Issue

First, the whole topic seem paradoxical. Lack of tear production is both a symptom of GVH and a cause of those painful GVH attacks. Yet, when I have an eye attack, as I call them, my eyes produce tears profusely, like a teenage girl at a chick flick. (Okay, or like me at a love story, or any heart-warming story for that matter.)

Anyway, where are all those tears coming from is the problem is tear production?

Second, we have two ducts to drain our tears. One is in the lower eyelid, near the corner of the eye, but not at it. I can see exactly where mine are because my ophthalmologist put tiny plugs (latex?) in the duct in the lower eyelid. This was to give me a bigger "tear lake" since mine, as I mentioned, were only 30% and 50% of full.

Third, I corresponded on Facebook with a person that produces no tears at all as a result of GVH. I have to suspect my method wouldn't work for her. She did find a great line of sunglasses called 7 Eyes Air Dams, though, that has an inconspicuous rubber ring around the lens on the inside of the glasses that butt up against your face, around your eye, to prevent wind and dust from getting in. I was very interested in those. My only complaint is that there are so many choices, I was really thrown.

I have finally decided to get prescription Air Dams, but I have to go get a prescription locally first.

They're available at Amazon.com. I'd give you a link, but I can't get amazon.com to load right now even though everything else I'm trying is working fine. Is it possible for Amazon.com to be down?

Have a great day!

15 Months in a Week

I mentioned the bruising on my arm a couple posts ago, and I even added pictures.

I was a little worried about a blood clot, but I saw my local doctor today, and he's convinced I either partially ruptured or partially tore the medial tendon on my bicep. I'm sure he thinks that caused the bruising because over the last three weeks, the bruises have moved down around my elbow.

I'm pretty sure I realize now what happened. I was worried that I might have a blood clot because the bruised area really didn't hurt until a week after I played soccer and got the gigantic bruise. Also, the pain was getting worse, not better.

Once the doctor told me there's damage to one of the biceps tendons, I knew exactly what happened.

The bruise came from crashing into someone playing goalie. There was a little soreness just under my shoulder on the outside of my arm, and the bruising clearly came from there.

Since my arm wasn't hurting, I continued exercising, and of late exercising has included trying to get back to being able to do one pullup. Each day I was getting to where I could get an inch higher, but I was really going at it, holding myself up as long as I could and really straining. I'm absolutely certain this is what caused the tendon problems.

Even more so, a friend reminded me tonight that there are medications that damage tendons. That includes the antibiotic that I've been taking ever since my first chemotherapy over a year and a half ago.

I can strengthen the tendon by exercising, but I have to go easier on it.

Actually, right now I have to go completely easier on it. Since I was worried the pain near my elbow was from a blood clot, I've been keeping all the muscles around there moving. Exercise is good for a blood clot. It is not, however, good for a damaged tendon, and that is why the pain's been getting worse. Fortunately, there's been too much pain the last week or so to try pullups, so I haven't done any "heavy" lifting on that bicep.

Now I know I have to rest it, ice it, give it Glucosamine and Gelatin and light massage. I need to treat it like an injury.

I only didn't figure it out because I never thought of their being two problems, bruising from soccer and tendon strain from extreme exertion trying to do a real pullup.

I have a history of going overboard and injuring myself--mildly--when I exercise. In this case, however, the doctors aren't encouraging me to do less, they're encouraging me to do more.

I have a plan, though, and it's working. Today I ran & walked 5 laps around our warehouse, just over a mile, in 12:25, a personal PL (Post-Leukemia) best by over a minute. My previous best PL time was 13:34, and that was for exactly a mile. Five laps around the warehouse may be 1.1 miles.

Each morning I get up and run on the treadmill at least four minutes. Usually it's just over 5 now that I've been doing this almost two weeks. Four minutes is pretty easy now, and I get only mild strain in my calves. Five minutes has me breathing pretty hard, and my calves get pretty uncomfortable, but it's significantly easier than two weeks ago.

I have a mile-long run in my sights for two weeks from now. We'll see how that goes. I hope to be up to 6 or 7 minutes on the treadmill every day by then. A mile will take me something like the 12:25 I ran and walked today, but it's easier to run outside than on the treadmill by quite a bit, at least for me. I've already done 7:30 of straight running outside, and that was at least a week ago.

I'm kind of excited about becoming a runner again, and I'm trying not to push the progress so much that I injure myself. I've already done that with my bicep, which means I'm limited on the upper body exercises until it heals. At 51, muscles don't heal real fast, so I've probably cost myself at least 4-6 weeks. That's pretty annoying, though I can still do situps and lower back exercises. I can even do pushups if I don't do too many.

Otherwise, life is seeming pretty normal again. I have to watch my toes really carefully to prevent outbreaks of ingrown toenail, and I still have the medications to take and the steroid cream to put on every day.

Oh, and ...

Hair!

I still have limited hair! As long as my hair is short enough that it can't be moved around, I'm okay. However, as soon as I let it grow much past a quarter-inch, then a hat moves the hair some, and it can leave me looking like I have mange. I just don't have that much hair.

What's funny about that is that I'm pretty sure the problem is that my gray hairs have not come back. It's not that they've gone back to being black, but they just haven't grow back. With only my dark hair on my head, my hair is pretty thin. Like I said, it doesn't look too bad when it's less than a quarter inch short, but seeing my scalp when it's longer makes me look sick (literally sick).

My white hair fell out 2 or 3 days before my black hair when I lost it, too. When it happened, the nurse told me she'd never heard of that happening to anyone else.

Now it's coming in last, too. I have my white beard hairs, though I don't think I have all of them. They are mostly on the side (and shaved off because there's so few of them), and my goatee is definitely not as gray as I remember it.

To give you possibly too much information, but it will be interesting for those who have gone or will go through chemo, I've grown and lost my underarm hair twice since I left the hospital after transplant. Mostly, I don't have any underarm hair now, even though I have most of the rest of my body hair back. I have a lot less hair on my legs, and I don't have any gray hairs on my torso. I used to have quite a bit of grey, at least on my chest.

Like I said, that's more than most of you want to know. I'm just kind of hoping to spare the next person the fear that they're relapsing if they lose hair they've already grown once. Happened to me, and I have no indications of relapse.