Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Sunday, March 25, 2007

Sunday +342 (Evening)

Well it has been almost a month since my last post to the blog. Jackie has been doing reasonably well. Her blood counts have returned to near normal. She continues to have some difficulty with her stomach/gut/bowel. The problem creates quite a bit of pain, but her prescribed pain pills do a good job of making things manageable.

We thought she might be facing a reoccurrence of C-Diff but the tests (3 so far, a 4th pending) continue to come back negative. We've seen this before. The tests for C-Diff are not very accurate. It may also be some GvHD in her stomach, etc causing the problem. She is taking a form of steroid that is normally used for Crohn's Disease. It keeps her awake at night and causes large mood swings, but she seems to be getting better. Upon return from our last visit to Rochester she felt "normal" for about a week. I think if she can get this stomach pain worked out she will do quite well. Her appetite has returned to normal - or even above normal. Less than a month ago she was eating nothing and now she is craving everything in sight!

In just a few weeks we will pass the one year anniversary of her transplant. For anyone reading this blog and considering a transplant you must realize it is a very long process.

Until later...

Bruce and Jackie
From Pryor, OK

Thursday, March 01, 2007

Thursday +318 (Evening) In Rochester

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!

Until later....

Bruce and Jackie
From Rochester, MN