Transplant Day +40

It’s been 40 days since my bone marrow transplant, and I am feeling as well as can be imagined. About this only strange side effects I am showing is the same two from ten days ago, the acid taste, and the swollen right leg. I’m wearing a compression stocking most days, which helps the swelling, and I am learning which foods make the taste the worst, and avoiding them, while trying to stay with the robust, spicy foods that overpower the taste. Mexican and Thai seem to do the trick.

In addition, on Day +30, my doctors took some extra blood to run a chimerism study, basically DNA testing to see how much of my bone marrow and immune system is still mine, and how much belongs to my donor. The test is named for the Chimera, a creature in Greek mythology, made of lion and snake and goat. In any case, their tests were promising – my lymphatic, or immune system, tested 83% as my donor, while the myeloid system, or my bone marrow, is 100% that of my donor. This is exciting news, and it means my treatment is doing better than expected at this time in my treatment.

So, looking forward, I now focus on the effects of having someone else’s immune system trying to keep my healthy, and do what the doctors tell me, to avoid serious GVHD.

More to come!

Milestone Number 1 – Day +30

Today is Day +30 from my bone marrow transplant, and I feel great!

For one thing, I managed to get through the neutropenic phase – when my immune system was essentially gone – without developing any infections or fever. I stayed out of the hospital, and my doctor tell me that puts me in an elite group. He told me maybe 2 percent of his patients pull it off. Well, I’m proud to be in that group.

I’ve also managed to avoid a lot of the side effects so far. No nausea, no vomiting, no bleeding. So far the only thing I got were some mouth sores (gone now), and a skin rash on my right leg only (likely from low platelet level, and gone now).

I also have a nasty, acid taste in my mouth, which makes eating some things, pretty disgusting. And, my right leg swells up from the knee down, more in the evening.

Those last 2 make the doctors scratch their heads. They tell me they are likely to go away fairly soon, so I’m not worried.

Of course, I have yet to get into the GVHD realm, but I am confident we will deal with that when it comes. For now, I am trusting God and His wonderful blessings!

This Feels Weird

When I checked in for my original treatment on March 15, I got an arm band as a hospital patient. Soon, they added another band with my blood information on it, to make transfusions easier. Ever since then, I wore the red striped blood band. Every three days I got a new one. In fact, if you look at photos of me, they all have that band.

Until today.

My CBC numbers have finally reached the level where, should my new marrow go its normal way, I won’t require any more blood or platelets. So today, my nurse cut off my last band.

So for the first time in four months, my left wrist is empty. Weird.

I’m sure I’ll get used to it.

Transplant Day + 15

So it’s been 2 weeks since the transplant, and I have to admit, I am a little embarrassed by how well I am doing, kind’ve like not talking about a no-hitter. But so far I have had no severe side effects from the chemo or transplant. So I thank God for this, and I keep going.

Today, my ANC level was above 1,500, meaning that the transplanted marrow has begun engrafting. My platelet level stayed the same, too, and since platelets are forever dying and being replaced (and mine have consistently been dropping, so that I required transfusions), this means my new marrow is making platelets.

About the only bad reaction I have had so far is that all my food has a really bad, sour acid taste. This leads me not to have much of an appetite, and I pretty much eat until I’m not hungry, then stop. The good news is that my doctor thinks this should only last a couple more weeks at most.

When do to the clinic every day, I hear about other patients who are having serious side effects, and some of them lead to hospitalization. In fact my doctor told me that he was somewhat surprised that I hadn’t been hospitalized, since most of his patients do. 

Well, I guess I’m going to be That Guy. We’ll see.

Transplant Day +11

I have now reached Day 11 post transplant, and things seem to be progressing as expected. How do I know? Every day, at my clinic visit, the nurse asks me a series of questions about how I’m doing. Mouth sores? Fatigue? Skin rashes? Any nausea or vomiting? Headache? Bleeding? How’s your appetite?

And now I’m getting sores on the sides of my mouth and in the internal jaw portion, that makes it impossible to open my mouth more than a couple of inches. I also am getting a red rash on my right leg, thanks to low platelet count. Fortunately it doesn’t itch or hurt. And I also get tired a lot.

So I guess headaches and bleeding and no appetite are next. Oh, well, I can live with it, since God is making sure I live with it.

I bottomed out on all my blood numbers two days ago, and I’ve had to have blood transfusions and platelets. The good news is that they all seem to be heading back up; my ANC count (the measure of my immune system, basically) went from zero to 0.04 to 0.12. Progress.

What this means is my old marrow is dead and the new marrow is taking over. And that has its own interesting effects and side effects. I can hardly wait.

So my days are spent at the clinic getting rested and having IV fluids and drugs. I’m also on a 24 hour IV of anti GVHD drugs, and carrying that pump around took some getting used to. But I get to see my doctor each day, and we talk about what’s next. It will be this way through Day 28 so I just go every day and do what they tell me.

So where do I stand? Well, I haven’t had to be hospitalized, which is apparently rather rare, according to my doctor. Most patients either get sick from the lack of immune system, or their side effects get so bad they can’t function. One fellow patient couldn’t keep any food or medicine down, and had to be taken over yesterday. So I thank God for my great doctors and staff, and I keep doing what they tell me.

Thanks to everyone for your prayers and support!

Transplant Day +5

After getting my transplant last Tuesday, things have gone pretty much by the book. All my medical test numbers have come back where expected, save one; my liver results are a little low, but that’s not unexpected after the high dose chemo last week.
My immune system continues to crash, but again that’s the point – knock off my marrow and replace it with the donor’s. 

So now I wait for all that to happen, and I go to the clinic every day for testing and two liters of IV fluids. 

As I become neutropenic I expect I will end up with a fever ( which they consider anything over 100.5F) and be back in the hospital in-patient. But, like after my original chemo, I don’t think I will end up with any identifiable infection.

To be honest, when it happened the first time and I had to be re-admitted, I felt a little guilty, like I had done something wrong. But seeing that I am now an undefended target for every other living thing on the planet, I’m not really surprised. 

So now I wait, and do what they tell me, and trust God to lead, as He has all along.

What a Week

Well, what a week.

On Tuesday I was blessed to receive my bone marrow transplant, and so far everything has been a success. 

Physically, the transplant was, in reality for me, just a ten hour transfusion, turning this

into this 

One thing I didn’t expect, because I didn’t think about it, was that I gained about 15 pounds during the transplant, and my body became rather bloated, which is saying something. Then, since so much of it was, in fact, water, I ended up going to the bathroom about once an hour for 2 days. Yes – once an hour, all day and all night.

Since this followed a week of high dose chemo, my own bone marrow is steadily going inactive, which gives the donor marrow its opportunity to take over. Over the next few weeks we will then see signs of this happening, as my blood test numbers come back up, as usual after chemotherapy. Only this time it won’t be mine, which is good, given that my marrow has so recently shown a talent for making cancer.
Of course, success is not a given, and even if it happens, I have to live through the transition. And the biggest thing there is the logical fact that my new marrow will see this old body as foreign cells, and go to work trying to do what God made it to do. This is called graft versus host disease, or GVHD, and, as usual, my doctor and team are ahead of the game. As a result I’ve been taking drugs to prevent GVHD by IV ever since the transplant, and I will keep doing so for a long time.

Now I have to get used to going to the clinic at Northside every day, for at least the next month, so they can check my progress. I’m managing to get work done there, thanks to an understanding boss and a job that allows. 

Thank you all for your prayers and good wishes – and watch here for more.

Transplant Minus 3 Days

image

In three days I will shift my leukemia recovery to another level, with the bone marrow transplant. So, for the past week I’ve been in another round of chemotherapy, and today that shifted from taking 88 pills every 6 hours, to IV injection. Add to that all the accompanying medicines to prevent nausea, liver damage, kidney damage, bladder damage, and the like.

And, of course, this has been accompanied by awesome support from the team here at Northside, called BMTGA. As you can imagine, I’ve gotten to know them quite well over these last 3 months, and I can’t imagine working with a better bunch.

So now, I just wait for the chemo to do it’s thing, and reduce my marrow to nothing, so we can add the marrow from the donor. And then, the real fun begins.

Update – Day 98

It’s now 98 days since I was first diagnosed with AML. And to be honest, I haven’t felt this good in quite a while. I’m in remission (meaning that my most recent bone marrow biopsy showed no cancer, thank God), and thanks to chemotherapy and the resulting doses of antibiotics, antivirals, and antifungals, just about every ailment I am normally subject to is now gone.

So, here is where I stand, and where I’m headed:

Today I started the next, and hopefully last, round of chemotherapy. This evening I start taking Busulfan orally, and on Saturday and Sunday I get IV doses of Cytoxan. Between the two, my personal bone marrow will be knocked down to nothing, in preparation for replacement by my donor’s marrow.

Then, next Tuesday, June 28, I report back to the Forth Floor at Northside Hospital, and receive my bone marrow transplant.

My attitude about all this is grateful. God has blessed me with wonderful caregivers, between my doctors and nurses, not to mention my wonderful wife Vicki, and my kids Corrie and Joey. Add to that a wonderful donor, and I am on track to be cured.

So, here we go!