[Greg H]

I just realized it's been three months since I put up a blog post or updated this thread. I think instead of measuring out my life with coffee spoons, I've begun measuring it out with milk pails. At the moment, my MDS is more chronic than acute, and I've lived with it a while now. So the day-to-day ups-and-downs seem a bit less significant than they did early on.

Since starting Danazol at the end of November, my platelets have jumped from the 70s & 80s to reliably top 100. The last three CBCs have pegged them at 113 each time. This is kind of interesting, because I've had platelets in the 90s for 15 years.

My neutrophils are reliably over 2,000. My lymphocytes, which were stuck at 300 for months and months, seem to be climbing, with an average of 500 in my last three CBCs.

I don't know whether the Danazol is responsible for these improvements, or if it's the continuing impact of the Campath I had earlier.

That leaves the Hemoglobin, which seems to be showing some (painfully slow) improvement. I'm on an every-other-week transfusion schedule, which means my Hgb is checked two days prior to transfusion, close to its low point. Since starting Danazol, those low points have gradually increased: 7.1, 7.7, 7.9, 8.3, 8.4, 8.5.

That 8.5 persuaded my hematologist that we should wait an extra week for transfusion, which took me back down to 7.6, but meant I went three weeks between transfusions. It also meant I was really suffering that third week. Once you get used to having Hgb regularly above 8.0, it is hard to take the 7s. I fully expect that I won't make three weeks this time, but it will be interesting to see where the Hgb stands in two weeks.

On a another front, I am sad to report that my wheatgrass tablets have not been able to keep up with my transfusion schedule. When checked a week ago, my ferritin was at 5,178. So, despite considerable skepticism from my hematologist, I'll be starting Exjade later this week.

My doc is right to be skeptical, because there simply is no really good data that shows iron chelation increases overall survival in MDS patients. But there is data that shows real harm caused by iron overload among thalassemia and sickle cell patients, who often start transfusions when they are children or teenagers, and have the chance to build up a lot of iron. I'm considerably older than that, but, at 55, I'm considerably younger than the typical MDS patient. I may have a lot of transfusions in my future. That suggests chelation would be a good idea. In addition, there is some decent data that indicates too much ferritin can create problems during stem cell transplant. Though I'm not an immediate candidate for transplant, the possibility is always out there.

I struggled with whether to use Exjade or Desferal. Dr. Dumitriu at NIH said he felt the gradual administration of the Desferal made it a superior chelator. But I couldn't find data to back up that preference. And I was concerned that I'd be less compliant with the Desferal needle and pump than with Exjade. I am very concerned about GI side effects with Exjade, since I really, really hate GI disturbances. But the data suggest only about twenty percent of folks have significant GI problems with Exjade. If it turns out I'm in that twenty percent, and the problems persist, I'll likely switch to Desferal.

I've seen folks ask from time to time on this and other forums about the cost of Exjade. My group health insurance has me buy it from a specialty mail order pharmacy, and the representatives there told me the monthly tab for my 1500 mg per day would be $7,300. I'm not sure whether that includes a discount negotiated by my health insurance carrier. Given my transfusion schedule, I've already hit my maximum out-of pocket for this plan year, so I won't be paying for the first two months.

If you follow politics or popular culture in the US, you've undoubtedly seen references to "the one percent," those folks at the very top of the income ladder. It turns out there's another "one percent," namely, the one percent of patients who account for twenty-five percent of health care spending in the US, and average $100,000 or more in health care costs each year.

With the addition of Exjade to my $6,000 per month packed red blood cell habit, I, sadly, will be joining that one percent. Thankfully, I have excellent health insurance.

Take care!

Greg