Well today was my 5 hour IVIG treatment, and then my appointment with Dr. Kipps. I had a blood test before my IVIG, and we got the results as I was being infused, so we knew the numbers before we saw the doctor. My Hemoglobin is at 14.3, which is almost as high as it has been since September, and that is with decreasing the Prednisone. Dr. Kipps was very encouraged that I am able to keep my hemoglobin levels up while decreasing the steroids. This means that my body is not killing off the red blood cells as it was before. He was so impressed he sat down and wrote out a schedule that has me going completely off of Prednisone by the end of February. It means that I will have a blood test every week because he has me decreasing the dosage every 3 - 4 days. If my levels stay up, then I should be off by the end of February. If they start dropping, then I may have to stay at that level or slightly increase the steroids to keep me from becoming anemic again.
Dr Kipps didn't talk much about the next step (treatment of the CLL) because he wants to get thru this tapering off of the steroids first. He said my lymph nodes are still down (he can feel them, but they are smaller than they were in November), and he can still feel my spleen, but it is remaining about the same size as it has been for the last month (again, smaller than November). He is still concerned about infections and wanted to make sure that my lungs are clear. He thinks that I should continue the IVIG therapy to protect myself from infections, but do it monthly instead of every two weeks, so my next appointment, with him at the end of February, will also include a round of IVIG.
He is very conservative about moving to the next step in the treatment and doesn't see a need to start something new until we have completely eliminated the Prednisone. My WBC (white blood count) is at 111,000, which is the lowest it has been since December of 2006, but he is not really concerned about that right now. At this point, I agree with this plan.
I feel good, and don't have any muscle weakness. I am playing golf once a week again (still riding), and it seems like I am slowly getting my strength back. I still have a slight cough, but overall, am feeling the best I have since September.
All for now,
Terry
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3 comments:
Hip Hip Hurray!!!!
I love you and am so thankful to God that you are doing so well. He IS hearing our prayers.
Love,
Donna
Good to hear you're progressing well! Sounds like you have an excellent doctor. Good you're able to taper off on the prednisone. Works well to incresse platelet count, but not great to use long term. Hang in there, Terrisimo!
I'm so new to this blog stuff that I didn't realize I could make a comment or two. You were on my mind today so I thought I's check your blog. I'm so happy to see that your blood count is staying and you will be off the prednisone soon. All good signs! Love,
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