Friday +101 Test Results, etc

Ok, first things first. Jackie did not get her central line removed. They wanted to leave in in for another couple of weeks to make certain her CMV didn't pop up again. When they made this decision her CMV test from yesterday had not been completed. By the time we received the test results (which are negative for the 6th or 7th time) it was too late to get the line removed. Actually the central line is nice since it keeps you from being "stuck" for the various blood tests. The danger is that an infection can occur in one or both of the lines and it is a foreign object protruding from your body. At this point it is also very painful to change the dressing since the skin underneath is quite tender. Jackie cries whenever the dressing is changed.

The test results overall were good. Her chimerism is still at 100%. Her PET scan was very good with no indications of any unusual activity. The PET scan shows area of hyperactive growth by using radioactive glucose. Glucose is consumed by the body when high levels of metabolic activity are taking place. So, for example, if you have a tumor that is reproducing it is consuming a high level of glucose. The radioactive isotope in the glucose injection Jackie was given would concentrate in areas such as the lymph nodes, etc and allow the doctors to determine the level of CLL that might remain. While they were able to determine that Jackie was in the process of digesting one of her many pills inside her stomach, they were not able to see any unusual activity related to CLL!

The doctor feels Jackies decreased blood counts could be related to at least one of her medicines. It is the oral form of the Ganiciclovir that could be causing the problems. For that reason they discontinued the medication. They also begin another series of growth factor shots. She received her first shot today. She will receive another 3 over the course of the next three days.

Jackie still continues to have difficulty in eating. The last two days have been especially difficult. What with all the tests and the interruption to her normal schedule she has not eaten much at all. She continues to lose weight. Her total weight loss is now over 50 pounds! She was nauseated much of the day and was vomiting this morning. She continues to have nausea with vomiting this evening.

Along with the oral form of the Ganciclovir they discontinued a couple of more drugs. One was a "three-a-day" liver function pill made from bear (yes the four legged kind) gall bladder. She was glad to see this one dropped. They are also reducing her Cyclosporine (anti-rejection drug) dosage by 25 mg every 2 weeks. At this rate she would be at a zero level in about 20 weeks. The reduction in Cyclosporine could easily trigger GvHD. In my opinion Jackie's nausea and vomiting is due to some GvHD in her stomach and gut. Reducing the primary anti-rejection drug could easily make the condition worse. Of course it is possible the stomach upset and nausea is caused by the Cyclosporine and a reduction in dosage will improve the situation. Only time will tell.

We did not receive the results from her bone marrow biopsy. They were not available before leaving. Hopefully there will be no surprises when the results are received. None are expected.

We have been cleared for another 2 week visit home. We will return around August 4th for more follow-up tests which will include a CT scan as well as additional blood work.

Finally, I want to remind everyone that Jackie is once again neutropenic. With her ANC count at only 440 she is highly subject to disease and infection. Please be careful if you plan a visit. The growth factor shots should increase this count quickly, but at this point she cannot stand to be sick from a cold or the flu.

Until later...

Bruce and Jackie
From Rochester, MN