Day 69

I just got back from my weekly clinic appointment and the news was basically good. The chimerism studies of both my blood and bone marrow still show 100% donated marrow with no other evidence of MDS or AML such as excess blasts or misshapen cells. The only abnormality is that in the bones, they would like to see 50% marrow, which I believe is normal, and mine is 30 – 40%. The doctor said this is not terribly unusual and is probably not the cause of my low WBC.

My blood counts for today were:
WBC – 1.4 (down again from 1.8 last Friday)
Hgb – 11.2 (holding steady)
Plt – 198 (also holding steady)

Also, I asked about my ANC (absolute neutrophil count) and was told that last week it was .8 which means I am not neutropenic (which is below .5).

There is still concern about what is happening to my white blood cells. The doctor says that they have a list of possible causes that they go through to try to determine what the problem is.
First they look at the possibility of MDS or leukemia relapse and in my case they are ruling that out for now because of the bone marrow biopsy and aspiration results
Next, they look at drugs that could cause the problem, and the only adjustment they made in my medications was to take me off my broad spectrum antibiotic and put me on penicillin plus another old antibiotic that they apparently used to use for leprosy
The third possibility is that my body (probably the lymph system) is producing antibodies that are targeting the white blood cells specifically. The body can produce antibodies against any organ or body part (an autoimmune disease) such as with arthritis where antibodies attack joints. The doctor thinks this is strongest possibility for the cause of my low WBC and I’m going back to the clinic on Monday to have blood drawn and sent out to test for antibodies (they only test on Mondays). This test would only be conclusive if positive; a negative result would not mean that antibodies are not the problem.

I’m starting to get more appreciation for how different every patient and every bone marrow transplant is for these doctors. This is why they can’t begin to predict how things will go. My marrow or blood seems to be having some problems, but I could never tell by how I feel because I haven’t felt better since the transplant than I do now. My appetite is good, I’m sleeping OK, my energy level is as good as it’s been (although I can’t sustain most activities for long), I have no nausea or diarrhea, no pain anywhere, no fever for weeks, etc. My cold even seems to have gone away.

So here are a few of the things for which I am currently grateful (not in a particular order):
I’m feeling relatively well
My current problems don’t seem to be really serious
Competent medical care.
My wife who takes such good care of me and suffers through the ups and downs of the process with me
Friends and strangers who support me and pray for me and my family

I’ll write again when I know anything more.

Love,
Justin

P.S. I believe today is the day that Eric in South Africa (who commented here a few times) was scheduled for his bone marrow biopsy. Please join me in praying for him and his family.

Day 63

I went back to the clinic today and my blood tests showed my white blood count is down again.

WBC – 1.8
Hgb – 11.3
Plt – 196

So the WBC went from 5.2 last Thursday to 1.8 today. While they said the platelet count going up a bit was a good sign, the WBC drop concerned them enough to want to do another bone marrow biopsy which they did today. I won’t get the results until next week. In the meantime, they cut the dosage of my immuno-suppressant from 3 a day to 2. When the PA told me to reduce the dosage, she also warned me to call in immediately if I got diarrhea or my skin rash became worse. It seems they want to give my new immune system more of a chance to do the kind of fighting it is supposed to do, and I think this may be because of a fear of relapse of my MDS. When I asked about this directly, the response was that they thought it very unlikely at this point because of the last chimerism study a few weeks ago showing 100% new bone marrow and because I’m showing signs of GvHD.

My creatine levels were down from Wednesday, meaning my kidneys are doing better, even though the only difference since then is that I was given IV fluids.

My blood counts may be doing strange things, but I wouldn’t know it without the blood tests because I still feel pretty good overall. I take this as a good sign, even if it’s from naiveté. I’m still not stressing much about the changes and still feel like whatever comes up, we’ll deal with it and get past it. The medical professionals I see seem to take the same attitude and I find that quite helpful.

Once again, I will write when I know something more.

Love,
Justin

Day 62

I had my clinic visit on Wednesday this week because my doctor is out of town later in the week. There were several interesting findings on this visit. First, my kidneys (not my liver like I indicated before) continue to show signs of distress I believe through elevated levels of creatine in my blood. This is enough of a concern to the doctor that while I was there, they infused 2 liters of fluid (4 hours worth).

We noticed a slight rash on my torso and they seem to think it is indicative of graft vs. host disease (GvHD). In addition, my blood counts were down a bit:

WBC – 2.8 (down from 5.2)
Hgb – 11.2 (down from 11.4)
Plt – 187 (down from 233)

The WBC could drop because of GvHD and the hemoglobin is down only slightly (and they gave me another shot of Procrit), but I don’t remember an explanation of why the platelet count might be down. All of this together led them to set up another appointment for tomorrow (Friday) for more blood tests, including a chimerism study of the circulating blood (which would show percentage of blood from new bone marrow versus old bone marrow). Depending on the results of some of these tests, they may decide to do another bone marrow biopsy tomorrow also.

I guess these changes might not be unusual or unexpected, but the more I think about it (and as I write about it), the more I wonder if they might be indicative of a problem. I guess we’ll know more soon, and in the meantime, I’m going to try not to worry about it, because the worrying doesn’t actually do any good. The other thing is that I still feel pretty good overall, and for that I am grateful.

I walked a little over a mile today because my feet feel a bit better and I feel like I need the exercise. So far, my feet are still not complaining about it.

I will write again as soon as I know anything more. Again, prayers and other good thoughts are appreciated and do help.

Love,
Justin

Day 57

Today is Day 57 which means it’s been 9 days since I last posted. Sorry about the delay. My cold is mostly gone, I just cough occasionally.

I had my weekly clinic appointment on Thursday and there were only a few changes. My hemoglobin was up to 11.4 which may be due partly to the reduction in my immuno-suppressant drug and partly to the shot of Procrit I got the week before. This time, they said to stop taking the blood pressure medicine I was on and reduced my immuno-suppressant again from 4 to 3 (contrary to what I said last week, my dosage was decreased from 5 to 4 at that time not 6 to 5). I believe this is partly due to the fact that my liver (correction - I should have said kidneys) is still indicating some distress and partly that the plan is to reduce that drug over time anyway.

WBC – 5.2
Hgb – 11.4
Plt – 233

My appetite has improved to where I get hungry sometimes, and my sleep has definitely improved, although I still don’t come close to sleeping through the night. I now usually wake up only 2 or 3 times per night and then go right back to sleep.

Exercise has become a bit difficult because of my two current areas of pain. Hemorrhoids aggravated by intense coughing fits have become quite uncomfortable and make bike riding problematic. And I have a strange problem with the soles of my feet that makes extended walks almost unthinkable. The soles of both of my feet often have a burning sensation that makes them quite sensitive and makes it hard to walk even short distances. This has been going on for 3 or 4 days straight, although it seems a bit better today than before. The doctor’s best guess is that one of the drugs I am taking is affecting nerve endings in my extremities. The problem may have been triggered by walking for a half hour two days in a row, possible overstimulating the nerves in my feet. This may also be why my hands are so poor at gauging temperature (like my skin often feels very hot when it is not and I can’t tell when water is hot or just warm).

So many things in my body are so different from what they were pre-transplant that it seems like nothing really surprises me any more. I can’t figure them all out, but I am generally able to accept them fairly easily. I hope this continues to be true even if the changes become more severe with GvHD.

As always, thank you all for your continued support.

Love,
Justin

Day 48

Today is Day 48. The cough I developed late last week developed into a full blown cold with coughing, stuffy nose and head, sore throat, and some loss of appetite. Saturday, Sunday, and Monday were pretty miserable for me and I felt really wiped out. I still have the cough, but have felt quite a bit better the last few days.

I was at the clinic today, and they said things haven’t changed much except that my hemoglobin is down a bit again (10.8) and they’re pretty sure it is because my liver is struggling a bit and not producing enough of a hormone that stimulates the marrow to produce hemoglobin. My liver is probably struggling a bit because my body is not absorbing enough fluids. My body is probably not absorbing enough fluids because of my immuno-suppressant drug. As a result, they did 2 things. One is to reduce that drug from 6 pills a day to 5, and the other is they gave me a shot that is supposed to encourage the production of hemoglobin.

WBC – 4.0
Hgb – 10.8
Plt – 225

They also said not to be surprised if my cold hangs on longer than usual (it could be weeks) because of my condition. My reaction (not verbalized) was that I’m actually not even used to having colds, let alone how long they last.

My wife and son with whom I live are supposed to get flu shots because I am high risk. That may be a little tricky with the recent news that about half the normal supply for the U.S. will not be available this year.

Like I said, besides the coughing fits, the last few days I have felt pretty good. I continue to walk and I’m steadily increasing the distance and speed. I’m pretty sure there are no marathons in my future, but I do look forward to getting back to tennis, basketball, and bicycling. I also feel like my appetite is improving – I actually start to get hungry sometimes. Of course my weight loss has also slowed and probably even stopped for a while.

Love,
Justin

Day 42

Today is day 42 (6 weeks!). I went for my weekly clinic visit yesterday and learned a few interesting things. First of all, I asked what it was that was keeping me from being able to drive and when might I expect to be able to drive. The response was that I could drive now because my platelet count is up. Well, that’s been true for several weeks and they didn’t volunteer that I could drive. I guess sometimes you just have to ask.

The doctor said that while he sees some signs that I might be developing some GvHD, he expects more. He said that they have 4 levels of GvHD and that levels 3 and 4 are pretty severe and they don’t want to see that, but that some level 1 or 2 would actually be good, partly because patients who get some GvHD seem to be less likely to relapse. I asked him if there is still a chance of relapse for me since there was no evidence of host marrow or blasts therefrom and he said there is because there could be some cells hiding and undetected by the bone marrow sample taken. My sister, who took me to the clinic asked if the GvHD evidence he has seen in me was level 1, and he said he would not even consider it level 1. So I guess I really do have some rougher spots to look forward to although no one knows when or what form or how severe it will be. But it’s OK, I know I have the support I need to get through.

They said my liver was having some problems because I’m not hydrated enough. I’ve been trying hard to drink a lot, but they said that because of the immune suppressant drug I’m taking, sometimes the body just can’t absorb enough fluid, so they gave me a liter of IV fluids.

Yesterday, I also developed a cough that continues today. There’s no fever and no sore throat or anything, so when I called and told them about it, they said to try to ride it out and let them know if I got sicker. Why do these things always seem to crop up on Friday when they won’t be around for the weekend? If I get worse on the weekend, I may have to go back into the hospital instead of the clinic. I sure hope that doesn’t happen.

Love,
Justin