In the PredniZone

I am two and a half weeks into my own personal Steroid Era, and it's great!

I started taking prednisone 18 days ago to manage out-of-control graft-vs-host symptoms: dramatic weight loss (despite 3000 calories per day), persistent full-body rashes, and muscle and tendon pain that prevented me from fully extending my arms. I needed help opening my special drinks (Boost, Ensure). I was also generally weak and tired.

Since beginning the new medication, I have gained about 14 pounds! A couple of days ago, for the first time in months, I had no active rash! My arm muscles are still tight and painful, but I can fully extend them! Recently, I opened a Boost drink without even using my special rubber gripper cloth!!!

Any downsides? Well, I'm writing this at 3 in the morning. Difficulty sleeping is one of the common side effects, along with increased appetite (check), feeling of a whirling motion, indigestion, increased sweating, mood changes, nervousness. Two out of seven isn't bad, especially when one of them (appetite) is a benefit at this point.

Maybe I should count mood changes, too, but I think "mood changes" would be ups and downs, whereas I'm just up.

I read that an "exaggerated sense of well-being" is listed as one of the serious side effects requiring medical attention. So if I get too excited about walking down the stairs without holding the railing, or too pleased with myself for how my Asian cole slaw turned out — and who wouldn't pat himself on the back for going all out and toasting the sesame seeds and the slivered almonds? — we might have to call the doctor.

In the meantime, I'm going to enjoy being in the predniZone.

Celebrate?

Last summer, my 100-day biopsy provided the first indication that I was relapsing after my transplant, leading to a longer and and more difficult road to a second transplant. The second time through has been harder in many ways, physically and mentally, and that difference extends to the recovery.

One hundred days after my first transplant, I weighed around 190 and I was training for a 5K. I was working well over 50% time. My hair had come back.

One hundred days after my second transplant, I weighed less than 155 and I am not able to run at all. I am working less than 25%, and I can't open the dryer with my right (dominant) hand or jars with any hand. And my skin keeps falling off.

But...

Where it counts, I'm way ahead of where I was at this point the first time. Yesterday, I got the results of the 100-day bone marrow biopsy for my second transplant.

Out of 400 cells examined, none carried the deletion-7 genetic marker of my leukemia. 0%!
Out of another 400 cells, all were XX (and therefore from my female donor). 100%!

Perfect scores!

My blood counts continue to be very good as well, and I have started gaining weight since beginning prednisone a week ago. And while I still have some new rashes, the percentage of body in a rashy state is lower than it was a week ago.

This is all great news. In fact, it is the best news I could have received regarding my leukemia.

But...

I thought I would be in a more purely celebratory mood if I got this news. Instead, I'm happy, for now. I'm beating leukemia, for now. This is a big difference between rounds one and two. I've gone from thinking of leukemia as something you can beat to thinking of it as something you can beat, for now. 

If you're lucky, it stays beaten for long enough that if it comes back, the treatments have improved so much that beating it again has become routine and precise and effective and a lot less dangerous to the patient. And, eventually, something else kills you, years down the road. Victory!

In the meantime, I am celebrating, in my way. I live for now. I literally stop and smell the flowers. I don't care what passersby think of the bald man sticking his nose into every flowering tree and shrub he can find. When Jan and I take evening walks, I try to track down the various perfumes that waft our way. It's been a strange spring, with lots of blooming schedules pushed earlier and on top of each other, but it's been a great spring for a guy with a nose that's hungry to smell them all.

Attacking the GVHD

My dramatic weight loss and widespread skin rash convinced my doctor that it was time to address my graft-vs-host disease directly, so I started taking prednisone on Tuesday. I will begin taking sirolimus next week. Both drugs are immunosuppressants, so I will have an increased risk of infection.

Also, I will be suppressing some (maybe all) of the anti-leukemia behavior of my donor cells. I have to hope that they have done what they needed to do — I will get my most recent report card in a few days, when I get the results of me last bone marrow biopsy.

The fact that it was the 100-day biopsy that brought the first bad news after the last transplant makes me apprehensive. The fact that I have had significant GVHD after this transplant makes me (and my doctor) hopeful.

My weight loss has stopped, and my appetite is better, in the days since I started taking prednisone (a steroid). I can't say the rash has improved much. It no longer covers half of my body, but that change had already happened before I started with the new medication. It feels like I'm chasing it around my body with ointment — it's clearing up on my chest and legs, but getting worse on my arms.

My weekly blood tests have been very good. White blood cells and hemoglobin are at normal levels, and platelets have climbed slowly but steadily toward normal.

I Have a Weight Problem

The last time I saw my doctor, the main task she assigned me was to gain weight. Don't worry about eating healthy foods, have as much ice cream and french fries as I can tolerate, and put on some pounds.

I have lost weight. I think I went into this second of treatment, back in October, weighing in the mid-180s on a 6-foot frame. It fluctuated a lot while I was in the hospital, with some extended periods during which I couldn't or didn't want to eat, and other periods when I was pumped full of IV fluids.

Since leaving the hospital, I have mostly weighed in the mid-170s (fully clothed, including shoes, wallet and cell phone) during my clinic visits. Recently, my clinic weigh-ins have been trending down to 170 and then below, which is what prompted my doctor's orders about 10 days ago.

Since then, I have been tracking my daily food intake using an online program. 2000 calories per day should maintain my weight, under normal circumstances. I have been eating 2500 to 3000 calories a day, which should add between 1 and 2 pounds a week.

At the clinic yesterday, I got on every scale I could find, and I weighed between 160 and 162, a loss of 5 to 7 pounds in 10 days. Our scale at home (naked weight 155, down from 161 a week before) yields a comparable weight loss. Maybe I am a little dehydrated, but it's clear I am not gaining the weight my caloric intake would predict, and clear I need to take in vastly more calories than I have been. Roughly 5000 calories per day should be enough to maintain my current weight!

My doctor has mentioned that GVHD can speed up the metabolism, but this seems extreme. Apparently,  any time I have left between napping and applying ointments will now be spent preparing and consuming food.

= = =

Update: To avoid large surprises at weekly weigh-ins, I now weigh myself daily.
Friday: 155
Saturday: 153.5
Sunday: 152

Not encouraging! Those numbers suggest it would take around 8000 calories per day just to hold steady. I need to set up a cot and sleeping bag at Denny's.

Spring?

The calendar says Spring arrived yesterday. The bulbs and flowering shrubs and trees say Spring arrived weeks ago, about a month ahead of schedule.

Meanwhile, inside, we're having a taste of winter. I'm having another round of swirling joe-flakes, as my latest bout of skin rash has progressed to the peeling/shedding/molting phase. The rash was worse, so the peeling is worse. My doctor has described the GVHD skin rash as similar to having a chemical burn, and it feels like I think that would feel this time.

It's especially bad on the palms of my hands. There's an entire layer of dead skin to get rid of, as if I had dipped my palm into molten wax, except I can't just peel it off. It can only come off when it's ready, or, more importantly, when the skin underneath it is ready, to avoid infection. My hands feel sunburnt.

The palm peeling process takes days. First fissures form at the lines that a palm reader would read. Then the skin turns yellow at the edges of the fissures and starts to peel away from the new skin underneath. It's tempting to pick at the jagged edges, even though I shouldn't, and I'm not good about resisting the temptation. After two days, my palms are about one fifth peeled.

I got a prescription for a stronger topical steroid yesterday. It is a creme that comes in minuscule tubes clearly intended for a small, localized rash and not a rash covering 60% of the patient's body. It takes a long time to apply the creme, several times a day.

Tomorrow I have a bunch of appointments in Chicago: dermatology and oncology to look at my rash, a pulmonary function test, and the famous 100-day bone marrow biopsy. After the first transplant, it was the 100-day biopsy that brought the first indication that all was not rosy, which started me down a rocky road to the second transplant. There is reason to hope for better news this time, in particular because of the GVHD that's tormenting me after this second transplant.

I have mixed feelings about the summerlike weather we have been having: sunny, highs in the 80s, evening temperatures in the 60s or even low 70s. The warmth and sunlight and early flowers lift my spirits, and my spirits can use the lift. The downside is that I want to but cannot get out into the yard to mulch and weed and prepare planting beds. Yardwork is prohibited — too many malicious molds out there.

I do get out for nightly walks with Jan, which are uncharacteristically sultry and floral for mid-March. On balance, the summer weather is a good thing.

The Skin War Continues, With Other Skirmishes

I haven't been as (literally) flaky for the past week, because I have been more aggressive with the ointment. I am now applying the ointment twice a day, once in the late morning (my sunbathing time) and once before going to bed.

However, I think I'm losing the rash battle at the moment. When I was first prescribed the steroid ointments, a few applications cleared up the rash. Now, despite the twice daily ointment, the rash remains on my arms and legs and elsewhere. Sometimes it itches, and sometimes it hurts.

It is especially bad on my hands, which are red and swollen, and the skin is cracking. This makes it hard to a do lot of things — prepare food, use a computer, brush teeth. Not impossible, but definitely uncomfortable.

Adding to the rash's discomfort is muscle inflammation, mostly in my arms. If I extend my arm to, for example, remove a glass from a cupboard, I get a sharp, searing pain between my armpit and my elbow. When the nurse tried to take my blood pressure at the clinic last Monday, the constriction from the cuff was so painful I tore it off. Some nights, it's hard to sleep because there are no comfortable positions for my arms.

I also have some numbness running up my arms, though I can't tell whether it's related to the rash or the muscle inflammation. It could also be a delayed side effect of chemotherapy. The inflammation is probably another graft vs host affliction. Hooray.

I might be reaching the point where we need to treat the GVHD systemically, even though doing so would interfere with the graft vs. leukemia that we hope is happening. As in so many aspects of dealing with leukemia, there are tradeoffs and often no right answers.

At War With My Skin

I mentioned a few weeks ago that I had a rash caused by graft vs. host disease (GVHD). I still have the rash, off and on. It is rarely itchy, but it does lead to dry skin, all over. Very dry skin.

How dry is it?

It varies, depending on the day and how recently I have applied my various ointments.

On a bad day, I notice flakes of skin falling into my food as I eat. When I take off my shirt, the flakes swirl around me as if I were inside a snow globe. The joe-flakes settle around me on the couch in drifts.  I feel like the Peanuts character Pigpen, surrounded by a constant cloud of dead skin. It's disgusting.

To prevent these blizzards, I have a full assortment of ointments and cremes, both over-the-counter and prescription. When the rash stopped being itchy, I switched from the steroid ointments to the OTC variety. However, they weren't keeping up with the dryness, so my doctor switched me back to the topical steroids. The problem with dry skin, aside from the gross-out factor, is that the skin is a significant  barrier against germs and other microbes. If it gets so dry that it cracks, those cracks open up a whole new front in the fight against infection.

While the dry skin is gross (and dangerous), prevention is also unpleasant. The ointments are based on petroleum jelly, so they don't work into the skin like a creme or lotion. They just sit on the skin, glistening and slimy. Since the rash is all over, I need to apply the ointments all over: feet, legs, groin, arms, hands, torso, face, scalp.

If it's a sunny day, I spread a beach towel in front of the patio door and lie in the sun for a while in my running shorts, pretending I'm at the beach. This is as close as I'm going to come to sunbathing for a long time, maybe for years, due to long-term skin sensitivity for stem cell transplant patients.

Eventually, I need to put on a long-sleeved shirt and long running pants so that I can move around the house and sit on furniture without greasing it up. The clothing sticks to the ointment, leaving me feeling clammy. Yuck. But better than getting an infection because I let my skin get too dry.

Not only is my skin dry, but so is my mouth. This is also a GVHD manifestation, as the disease can attack the salivary glands. The dry mouth makes eating some foods challenging, especially bread and cookies and similar stuff. If I'm not ready with something to drink, I end up with a chewed but unswallowable mass of food in my mouth. Yum.

So, woe is me. I'm either flaky or oily, and my mouth is a dysfunctional desert. All of this makes my doctor very happy. She keeps reminding me that I had none of these symptoms after the first transplant, which did not lead to remission. GVHD indicates that my donor cells contain T-cells that treat my own skin cells as the enemy, which is bad, but which increases the probability that my donor cells will also treat any leukemia as the enemy, which is good.

(Eventually, researchers will figure out how to give a leukemia patient T-cells that only attack leukemia.)

There's no predictability to how long the GVHD will last. Days, weeks, months... who knows. As long as it's going on, I'll be lubing up and both cursing and thanking my new T-cells.