MD Anderson Visit

I thought I better post about our visit to MD Anderson Cancer Center in Houston on Monday. Not too many surprises, but also didn't learn much new, although I don't know if I was expecting to learn anything new. The two doctors I saw both acknowledged I am still moving closer to chemotherapy treatment again, but I am not there yet. Some areas of blood work were actually better. Platelets were above 100 which pleased Dr. Wierda. Very surprisingly, my IgG level is still in the 700's so I won't need my IVIg infusion next week as scheduled. That means it held for two months this time! White count and absolute lymphs are still inching upwards, but absolute lymphs aren't doubling in the six month time frame yet. I did report I am beginning to have relatively mild night sweats. He also could feel the lymph nodes being larger, which I knew because they bother me and, of course, the CT Scan reported they have grown. My spleen is still holding. I think there were 13 areas on the blood reports out of normal range, either too high or too low.

Then we discussed this lung stuff. He said if it is leukemia cells (CLL) infiltrating the lung then that would indicate aggressive disease and we would need to start treatment. He also said if that is the case he would also refer me to the transplant doctor. (I hate it when he says that, and it is the second time he mentioned referral for bone marrow transplant.) However, he is expecting it to be an infection and specifically mentioned PCP - a type of pneumonia. When I asked him why, if it is an infection and my IgG levels are still up, why am I not showing symptoms and not mounting a defense with fever, coughing, etc. He did not have an answer and said it was a mystery. (I also asked his associate the same thing before seeing Dr. Wierda and he didn't have an answer, either.) He wants me to have the results of the lung biopsy faxed to him. I also asked him if it is an infection, what can I do to watch for these and to know when I have one if I don't have symptoms. I had pneumonia last year without any symptoms and that one also showed up on the CT scan, but just as fluid in the lung. Again, he didn't have an answer other than to say I just had to be very careful. The doctor said he could hear "crackling" in my lungs. He also said he would prefer I not have so many CT scans, even though he knows the pulmonologist will want them. He wants me to encourage the pulmonologist to try using regular x-rays even though he probably won't want to do that. The reason being the scan's give clearer pictures, but it is also a lot higher radiation exposure.

Dr. Wierda also said he would want another bone marrow biopsy before starting treatment. I told him that was fine, but I wasn't having it done there! That is where my most painful one ever was done. The two done locally I didn't even have soreness afterwards. He said that was OK, but I had the opposite experience of most people (most people find the biopsies there more tolerable as they are the experts because they do so many). Which led to a discussion of how I don't follow the norm anyway. He said before he came in they were just discussing me as the guy with all the good prognostic markers who still has advancing disease and who is a prime example of why they obviously have not discovered all the important indicators yet. Similar to a statement he made last time I saw him.

Bottom line, unless I have leukemia cells infiltrated into my lungs, he only wants to see me again in four months. So, I get another pass on chemo treatments for the time being.

I didn't hear from the Pulmonologist this week other than a call late this afternoon to remind me of my appointment on Tuesday. When I saw the caller ID, I thought we might have an answer, but not yet.

Because of the prayers of many, I really am in a good place mentally with this and just anxious to deal with whatever we must deal with. God is keeping me calm. I'll post Tuesday evening after I see the doctor and I sure hope he has results by then.

Have a great holiday weekend!