Thursday, May 30, 2013

Life as a Leukemia Surivor

I am a leukemia survivor. People tell me that I am an unusual one.

This post is written specifically because I'm worried that yesterday's was boring, even though I felt like it was essential to write those things for the sake of other survivors who might need to see how others did.

Today's ... well, it won't be.

I was given permission by Vanderbilt Medical Center to move away from the area in early May, 2012; just over a year ago.

Here was the story at that point:
May 1: "When [the EMT] lifted the bandage, there was a small explosion of blood that splattered all over the bed, my shirt, and even on him. The blood then began running off my chest and pooling in the crook of my arm."

The bandage that squirted when peeled.

May 10: We moved back to Selmer from Nashville.

May 30: "I only got about three steps down the line before my conscious mind caught up and realized that I had no idea where my feet were in relation to my body. All I knew is that my legs were somewhere behind me, too far back to have any hope of staying upright.

"I imagine it probably scared everyone to have the leukemia patient take a dive down the first base line, but we were playing in a grass field. It was soft, I rolled, and it didn't hurt at all."

This is how I had to dress for softball, too

June 13: I was still losing weight. I was 130 pounds, down from 190 before the transplant, and the chemo lines on my fingernails were growing out:

The scrawny dude
chemo-lines; one grown to the end, the other halfway
Being scrawny gave me some good stretching abilities!

Life as a Workaholic Leukemia Survivor

That sorts of sets the stage for where I was one month after returning to my home in Selmer.

In that condition, I returned to work. I run my own business, so I was able to set my own hours. I had to stay home and rest about one day per week, and hemorrhoids would be an ongoing problem throughout the summer.

So what would you do?

I rented a building in Selmer and tried to start a coffee shop.

Understand the scenario. Our church owns the building in Selmer, and they tried to do a coffee shop in 2011. It was almost successful. I really believed the problem was that we had a terrible sign, and there was no way to really tell what the building was being used for. Also, we had no advertising budget, so there was no advertising, either. Just word of mouth.

So I rented the building and tried to do it right. I advertised in the paper. I put a good sign on the front of the building, and I tried to run it with my daughter and a friend.

Front of the Selmer Buzz

Run it? I was already working, and I was taking naps at work on my office floor to do so. I was trying to catch up from 10 months of being in Nashville away from the office. The worst part was trying to catch up from the four weeks I didn't even eat, much less look at emails and texts.

I don't just have a warehouse business I was running, but I maintain four web sites besides this blog.

Why was I starting a business?

It seemed right. The building was sitting empty, costing my church money. I really thought I could make it work, and I was looking forward to using the building for seminars and other educational events that would benefit the community.

People suggested that maybe I was overdoing it. I acknowledged they might be right, then went on about my business.

The Day

Then came "The day."

I don't remember what day it was. I think it was in August.

We were open in the afternoon, but my daughter was unavailable to work for some reason. I tried to get hold of the friend who was helping me, but I couldn't reach her, either. Finally, I got my secretary from work, and I went down to The Selmer Buzz, as I was calling the new coffee shop.

Our advertising and sign hadn't worked at all. Business was incredibly slow, and we certainly weren't making any money. We did have one very successful seminar on health care reform, but otherwise, pretty dead.

It was not a good day for me. Back then I called those "fatigue days." Usually, I just stayed in bed all day. I'd been told not to fight those days. They always win. Today, however, I couldn't do that. I had to open the coffee shop.

I remember the time frame now. It was late October, early November, 2012. I had jogged for 3 or 4 minutes one day a couple weeks earlier, an extremely long run for me at the time. The next day I had run, then walked, 20 or 30 yards each, for a mile. That was really tiring. The day after that I went on a 4-mile walk with my family at a local park, much of it on hills. I was hobbling by the end, as was my daughter, who had injured her knee.

Exercise is supposed to help prevent blood clots, but I suppose overdoing it can make them happen. I got a blood clot in my calf so bad that I couldn't stand for longer than 5 minutes at a time. The pain in my calf would build and build as I stood, then begin to relieve if I could sit down and get my leg elevated. I brought a wheelchair to the coffee shop so I could get around with my leg up.

In that situation, on a fatigue day, I went to the coffee shop with my secretary from the warehouse so she could help me run it. I showed her how to the run the espresso machines and the "cash register," which was really a program on the Selmer Buzz' iPad.

Then, exhausted, i went to take a nap in the back seat of my car. I covered myself with a sleeping bag, and then realized that my toe hurt too much for me to sleep.

I have always been prone to ingrown toenails, but rarely have they been bad. I had chemo lines on them now, though, and the toenail was brittle. It had broken, and when I looked at my toe, I realized how bad the ingrown toenail was.

I don't remember which of these chemo lines gave me the problem.

Sighing and longing for sleep, I got out my toenail kit, which I carried with me at all times due to my finger and toenails constantly breaking or crumbling. It was agonizing, but I got my toenail as cleaned up as possible, and I got some Neosporin on the bleeding side of the nail.

My toe was throbbing, and it was trembling like a hurt puppy. I figured the pain would wear off pretty quickly, so I laid back under the sleeping bag, leaving my foot bare. I took a deep breath, and ...

Tap, tap, tap.

I looked up at the window where my secretary was tapping. I unlocked the door, and she opened it.

"There are four customers in there, and the espresso machine blew apart. I don't know how to work the other one."

My heart sunk. I was so tired. I couldn't imagine getting up. My toe was throbbing, and my foot was cold.

"I don't know if I can make it," I told her.

She went back in.

I pulled myself up, then I pulled my sock over my still trembling toe. I loosened the laces on my shoe, and I pulled it on my foot. Then I hobbled into the coffee shop through the back door. My calf started to throb as I got inside. My toe was already throbbing.

I smiled and greeted the guests, and I went to our new espresso machine. We weren't using it because my daughter didn't like it. I knew how to use it, but I'd only used it a couple times. Being distracted by pain and trying to take care of the customers, I quickly reached down and pulled the cap I would have pulled on the other machine.

Steam blasted across my hand. The pain was instant.

I jerked my hand back, looked at my secretary, smiled, and said, "Oops."

Amazingly, between me and her, we got the lattes out in a couple minutes. I had been standing the whole time. Pain was shooting through my calf and making its way up into my hamstrings. I looked at my secretary and said, "I'm going to bed now. I hope we have no more customers."

I grabbed a soda can on the way to the car so I'd have something cold to relieve the pain in my burnt hand. I hobbled quickly to the car, needing to get my leg in the air to stop the pain in my calf.

In the car, with the cold soda can pulled under the blanket with me, I uttered one prayer before I went to sleep. It was pitiful. "God, please stop hurting me." That's the last thing I remember.

The next day I closed the coffee shop.

December, 2012

 Obviously, I'd learned my lesson. I needed to rest. I'm a former leukemia patient, but still a recovering one.

The blood clot cleared up and stopped causing me pain in November. So in December I drove with my four youngest children to California for a vacation. My oldest son lives in southern California, in Riverside, and my brother lives in Sacramento, as do some "missionaries" from our church.

My oldest daughter, just turned 17, was diagnosed with the flu right before we left. She threw up regularly throughout the first two days of the trip.

Funny, though, despite my depressed immune system, I didn't get sick. Neither did anyone else in the family.

The weather had been in the 40's and 50's and drizzling for at least 2 or 3 weeks before we left. We were looking forward to the drive across the deserts out west.

When we got to southern California, the weather was in the 40's and 50's and drizzling.

I was cold all the time. I liked nothing better than curling up under blankets with a ski cap on, breathing down into the blankets to keep them warm.

My skin was also incredibly dry. It flaked everywhere. I was constantly having to brush it off my clothes. It was like I had dandruff everywhere, especially my face. To combat it, I applied a strong moisturizing lotion over most of my body twice a day. It was cold to put it on, and the moist layer on my skin just made me colder than I already was. It was also horribly time-consuming, as I also had to apply steroid cream to my skin twice a day.

I froze every time I had to apply the lotion or cream. Then I would be cold afterward, and I was cold all the time anyway. I missed a few applications of the steroid cream because I couldn't bear it, and I returned to Tennessee, driving, with a GVH rash over most of my body.

February, 2013

I tried to rest through January, but at the end of the month my son called from California.

"Hey, mom and dad, I'm getting married."

"That's fantastic, son! When?"

"February 10."

My wife said "Great!"; I said, "Isn't that in 11 days?"

It was. Amazingly, we found one very well-priced flight for February 8. Back out to California we went.

This kind of "rest" turned out to be very effective. I had a big increase in energy about that time. No kidding!

March, 2013

March brought spring break. We planned a vacation with the kids to Gulfport, MS. We would take them to the beach.

Then a friend called. He was coming down from New England. Could we meet him in Virginia Beach, Va on the 15th?

Sure, we'll just drive, uh, 14 hours, then come back, pick up the kids and go to Gulfport a few days later.

The trip to Virginia Beach was spectacular. We stopped along the way to visit another friend we know in Virginia, but we made a wrong turn and ended up on a narrow dirt road, climbing a mountain with a drop on both sides. My wife was driving at the time, and we were both terrified. When we got up the mountain, I got out of the car to ask someone for directions, and I was bitten by a dog.

By the time we got to Virginia Beach we had been on the road closer to 24 hours.

When we left Virginia Beach, we chose a highway through Norfolk. We hit Norfolk at rush hour due to poor planning. But it was not just rush hour. There was also construction on the east and south exits out of the city. Traffic was literally at a standstill. We gave up, parked, and went to a mall. This time it was my wife's turn to sleep in the car. She was too tired to shop or drink coffee.

Once we made it back, much slower than had been planned, we got ready for our vacation to Gulfport.

But wait! A pianist with whom my wife is familiar was coming through our town, and he could do a concert if we could arrange it! The only available day was the Wednesday of the week of spring break.

We made a change of plans. Only two nights down in Gulfport, then race back for the concert, then off to the space museum in Huntsville, Alabama, which is only 3 hours away.

Great plan, except our car broke down in Gulfport. We took it to a mechanic, but he couldn't fix it. It's a Lincoln. It's an older Lincoln that I got for $2250, but it's losing functionality because all the parts I need to repair it cost more than the car is worth. (Okay, that's a slight exaggeration.)

Off to the dealer it went. Off to the dealer in Gulfport, MS, that is, and since the first mechanic had the car for a day, we no longer had time to pick it up. We had to go back to Tennessee for the concert. We rented a car and headed home.

The return of the car at the end of the week, after the space museum in Huntsville, went without incident. The trip was not 3 hours, since we had to drive to Gulfport from Huntsville, a good 6-hour drive, then an 8-hour drive back to Selmer, but our Lincoln was fixed. The dealer had even fixed it inexpensively. Amazing.

April, 2013

April saw us flying out to California again!

There was a Bone Marrow Transplant Information Conference in Costa Mesa. Two days of doctors, seminars, questions and answers with BMT specialists, and meeting fellow blood cancer survivors. I really wanted to go.

Just for fun, we threw in another trip to Sacramento by car. Another 8-hour drive. We rented a tiny car that got 40 miles per gallon, and we gallivanted around California for a week. We even drove the Pacific Coast Highway coming back from Sacramento. We took pictures and exhausted ourselves, then arrived at our hotel the night before the flight at 11:30 pm. Fortunately, we had a non-stop flight that didn't leave until early afternoon.

May, 2013

We flew out of California on April 30. On May 2, two days later, I spent the entire day in Memphis at a writers guild and meeting friends. The next day, we spent the entire day in Nashville for doctors' appointments. That was Friday, and another week was gone without an appearance at my warehouse.

The following week was a blur of catching up.

Did I mention that we are outgrowing our warehouse? So we are not just performing business as usual. I am also going out with my warehouse supervisors to look at larger buildings.

A Typical Day

On a typical day I get up between 6 and 8 a.m. It takes over an hour to get ready for the day. I have several prophylactic treatments I do every morning, including checking my big toenails for fragmentation and cleaning them with alcohol. I have to steroid cream my entire body every morning, too. Sometimes there are other things I have to do, depending on the condition of my stomach. Breakfast is not optional, but mandatory so that I can take my morning meds without throwing up.

Usually the morning is filled with internet stuff—answering emails, writing blogs, marketing online, working on a book—which I often do from home. I leave for work before lunch. Often I have to stop on the way for refills on medication, either from the pharmacy or from the grocery store.

I get to the warehouse between 10 and noon, depending on the errands I needed to run and how long I was writing. If it's before noon, I check my to do list, then check on the people. One of my main jobs there is to make sure it's a positive work environment. I take lunch with the warehouse workers, and if I'm lucky they'll have room for me to play soccer with them the last few minutes of lunch.

After lunch I face the torrent of things that come my way. If there's problems at the warehouse I handle them. Accountants, meetings with supervisors, website and book planning with my daugter-in-law, church meetings, salesmen. There are never enough hours in the day, and it's always a temptation to hang around the office late—a temptation I'm careful to rarely let myself fulfill.

Most of the projects that pile up and demand my time are web site and writing projects. I have four main web sites and two blogs, including this one. Between them they got over 2000 unique visitors per day and over 4000 visits per day in April. Since that's 1.5 million visits in a year, the writing seems worth it. I always wanted to be a writer, but I could hardly imagine well over a half million unique readers of the things I write.

My web sites, by the way, are:

I only write the first and third of those. My daughter and daughter-in-law have written most of the Revolutionary War site, and my daughter-in-law, Esther Pavao, has a booklet called Slavery During the Revolutionary War that is available on Kindle!

My son and some college friends write the pages on the soccer web site. The fullest section of the site is its famous players section.

Friday, May 24, 2013

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.

Wednesday, May 8, 2013

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 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.)

Monday, May 6, 2013

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."
HIV entry into T cell schematic
By Rachid Sougrat, Alberto Bartesaghi, Jeffrey D. Lifson, Adam E. Bennett, Julian W. Bess, Daniel J. Zabransky, Sriram Subramaniam [CC-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.

Thursday, May 2, 2013

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

Have a great day!