Why couldn’t I have something simple, like pneumonia

Pneumonia is so simple – when you have it the doctors can figure out what you have and they know how to cure it. That’s the ticket – simple, curable. Why couldn’t I have had pneumonia? Er, I probably had it at some time and shrugged off it. After all this is cowboy country. Cowboys suck it up and get on with it, or so they say. My experience with that sucking it up stuff is that it works when you’re young. When you get on in years that which got sucked up keeps popping back out.

Unfortunately I don’t have pneumonia. Instead I have, er, ah, well what do I have? That depends upon which doctor you speak to. Remember that quiz show game with the three doors. I have my own version. Behind each door is a doctor. Behind door number one is Doctor M. According to Dr. M. I have ITP aka Idiopathic Thrombocytopenia Pxxx. Dr. M. put me through a series of treatments. The last one put me in the emergency room. Apparently I don’t have ITP, or if I do, I can’t survive the treatment.

We shut the door on doctor number one and went on to door number two. Dr. T. is a world renowned authority. Dr. T. decided that I have Myeloproliferative neoplasm with dysplastic features. According to Dr. T. there is no cure but it might not get any worse – or it might. No cure, no remission. His treatment was Danazol, a drug that would boost my blood numbers and make me feel better. Not a cure, but better than nothing. Believe me, this was a step up.

As it happens, Dr. T was is 500 miles away. He suggested that I should find a doctor who was a bit closer. It turns out that the local hospital (that would be in Pierre, only 50 miles away) has a nurse practitioner who specializes in oncology. More importantly, she works with Dr. V., yet another world renowned authority. Dr. V. is in Sioux Falls. However he does teleconferencing with patients in Pierre. Dr. V. did a new bone marrow biopsy – not, I assure you, in Pierre. We had to traipse to Sioux Falls for that. One of the troubles with this medical crap is that we keep having to travel all over the place.

The long and the short of it is that Dr. V. thinks that I have Myelodysplastic Syndrome, aka MDS. Since everybody knows what that is I won’t bother with the details.

Dr. V. also thinks that I should immediately go into a course of treatment with something called vidaza aka 5-azacitidine. This is serious stuff. I would be getting seven days of infusions with twenty one days off. That’s one course of treatment. I would be getting a number of these things over time.

So what is vidaza and what would it hypothetically do for me? Vidaza is something call a hypo-methlating agent. What it does is clean off methyl groups from my stem cell DNA and make my stem cells nice and clean again. At least that’s what they would like to think it does.

There have been a number of studies with this stuff and it does have a pretty good success rate. However most of these studies are with patients who are much worse off than I am. That is the sticking point. Dr. V’s diagnosis was

1. Myelodysplastic syndrome RAEB-1
2. IPSS score of INT-1

What this means is that I have excess blasts in my marrow. 0-4% is okay, 5-10% is stage 1, 10-20% stage 2, and 20% is really bad news. The progression – if it happens – is to keep more blasts and other bad stuff and then go into a form of Leukemia called AML. If I do nothing and go down that road my life expectency is about 3-5 years. However that is not carved in stone. Quite a fair percentage of patients never get any worse.

I have mild MDS. I don’t need red blood cell transfusions or platelet transfusions except if I am having surgery. I don’t have any bleeding problems other than bruising. I have mild anemia, which means I have fatigue issues and am short of breath. It’s quite possible that I can go on like this indefinitely. As these things go I’m in pretty good shape. People with serious MDS have real problems. They may regularly need transfusions, bad stuff keeps happening, and the grim reaper keeps tapping them on the shoulder.

Okay, but if this stuff works, or at least has a shot at working, why not go ahead and try it? That’s a very good question. Dr. V thinks it is a good idea. Dr. T doesn’t think so. Most of the studies are about people with serious MDS (people doing studies like to work with the bad stuff first.)

From my perspective one good argument for trying the treatment is to find out whether it does work for me. The down side is that there might be bad side effects. Instead of raising all of my counts they might make them worse.

In the meantime I’ve had a port-a-potty, er, port-a-catheter put in. This will let medical people infuse stuff into me and draw blood without messing with my veins. I’m not doing anything else until the aftermath of this operation heals up. In the meantime I am reading medical studies like mad.

Why couldn’t I have something simple, like pneumonia