Today we met with the doctor to go over Jackie's most recent test results. All results were good. Having performed an examination of both her upper and lower GI tract they can find no discernible traces of graft-versus-host (GvHD) disease. Her endocrinology tests were also normal. Most importantly her flow cytometry tests were fine. This is the test that would indicate the presence of any CLL cells. Her flow cytometry test indicated only a high presence of T-cells. Normally this would indicate an infection or inflammation. There is no indication any infection exists. It IS possible that Jackie has a low level of GvHD that is present in the small intestine that could not be examined by traditional means. Her CT scans also showed improvement in her lungs with a minor decrease in the size of her lymph nodes. This is also a good indication that no CLL cells are present. A FISH (fluorescent in-situ hybridization) test is still pending. This, too, will test for any residual CLL.
So...if Jackie is doing so well why does she feel so bad? The short answer is, "they don't know". It is possible that a minor amount of GvHD exists that is undetected. They are giving her a new steroid that is absorbed locally and is used the treat Crohn's disease. If she some GvHD this should be an effective treatment. They have also changed her pain medication to a longer lasting form - Oxycontin, Rush Limbaugh's drug of choice. Given the fact that no GvHD was detected they are inclined to further taper her anti-rejection drugs in the near future. Her current level is now very low, but the goal is to eliminate them entirely. They've also given her a new, nasty tasting solution that is supposed to help with her appetite. Her total weight loss is now about 100 pounds. She has lost another 10 pounds since our last visit in December and about 2 pounds just this week. I don't think she ever dreamed she would be taking two separate drugs to improve her appetite!
Lastly the doctor mentioned that new data was revealing that transplant patients who had experienced a high level of eosinophils after transplant were found to have higher levels of transplant success and long term survival rates. As you may remember, Jackie experienced a rare form of pneumonia several months ago - eosinophilic pneumonia. Scientists believe that a high level of eosinophils are somehow related to a "good" form of GvHD. They have no idea why a high level translates to a better result, they just know that it does.
We had hoped to head home either late today or tomorrow with our new satchel full of potions, pills, and salves but we now have a raging snow storm and blizzard taking place in MN and IA. The road we take home through Iowa is now closed and we have no idea when it will reopen (I-35). The weather is so bad in northern Iowa that they closed the new Diamond Jo Casino. Now THAT'S bad weather!
Bruce and Jackie
From Rochester, MN