Well, after my doctor's appointment today it looks like there will be no more treatments for now. My white count is down to 6,900, my hemoglobin is at 13.8, and my platelets are at 254,000. My lymph nodes are still palpable and the same size as last month, but they are very small. My spleen is still there, but also very small and MUCH smaller than when all of this started to go haywire. Dr. Kipps said that my lymph nodes and spleen may just be this size. He did not see any value in having another treatment since the only real change was my white count dropped from 13.0 to 6.9. It does appear that we have the Autoimmune Hemolytic Anemia and the CLL under control for now. I will not have another blood test (unless I start to look or feel bad) until November 12th, which is when I am scheduled for my bone marrow test. Dr. Kipps thinks I will be fine until then.
He has taken me off of 2 prescription medications, but still wants me to have monthly IVIG and Pentamidine treatments, which I will have next Wednesday. If you remember, those are no big deal, just an all day event. Both of those treatments are to protect me from infection. My white count is lower than I can ever remember (normal is 5,000 to 10 or 11,000).
The 3 rounds of Rituximab and High Dose Steroids that I received is a protocol that was developed through a Clinical trial at UCSD that ended last year. The dosage levels that I got were determined through that trial. I did ask him how long this remission is supposed to last, and he said 'it depends on a lot of things'. Even though it is not a definitive answer, it was the one I expected because everyone responds to treatment differently. We did talk a little about options after this, and he has a lot of them at his disposal and I am confident he will chart out the next course as well as he has done so far.
In mid November I will have the bone marrow biopsy which will determine what involvement there is at the bone marrow level (where the bad cells are produced). This test will determine how much good the treatment REALLY did, and if I need any additional treatment at this time. So, once again, we will be anxiously awaiting the results of the test which we will get at the end of November.
At the end of my appointment, Dr. Kipps said he was happy with my progress considering where he had started with me. His comment was something like 'you were as white as a sheet and you weren't doing very well'. An understatement, I think. So I got up to shake his hand goodbye, and he says to me ' can I have a HUG?'. Now how many doctors have you known or seen that have done that. We were absolutely floored. What a guy.
A side note; my Dad has been having his own medical issues. He went in two weeks ago for a lower intestine resection (stomach surgery), and has had nothing but complications since the surgery. Just this week he has a taken a turn for the better, but still probably has two more weeks in the hospital, then rehab. Please keep him in your thoughts and prayers for a speedy and complete recovery.
Terry
