Well, today I had more blood work done and my Red count continues to go down. It seems that the Prednisone is not kicking in, or is just not working like it did before. The plan is to increase the Prednisone by 20mg to a level of 80 mg / day and to go down to La Jolla on Thursday and have another blood test and do a type and cross match for another blood transfusion. It will take about a day to find the correct blood (remember that I have difficult blood to match), and the plan is that I will go back down on Friday to have between 2 and 3 units of blood. The reason I am going back to La Jolla for this is that they have to give you the transfusion at the place they do the type and cross match. In La Jolla they can do the transfusion at the Infusion Center and I would be out at the latest by 7pm. If I did it up here they would have to admit me to the Hospital and I would have to wait for them to find the donor blood. The last two times I had it done up here I was in the hospital for 24 hours each time, and I got NO sleep. So even though it is a longer drive, it beats the inconvenience of being in the hospital for 24 hours.
Because they want to try to stop the Hemolyzing (killing off of) the red blood cells, they want me to come back down to La Jolla next week to get infused with IVIG, and with low dose Rituxan. Next week they will do this over two days, and then continue once a week for 3 weeks. The hope is that between the Prednisone, the IVIG and the Rituxan, this will stop the hemolyzing. After it is stopped then they will try to start on a therapy for the CLL, which would be sometime in June, assuming everything goes as planned.
The funny thing is that I am really not feeling that bad. I am playing golf, doing chores around the house, and not really very tired. So my body seems to be dealing with all of this pretty well, but I know I can't continue on this downward trend.
This is not exactly the way I would have mapped it out, but I am believing that this new course is the one that will get be back on track.
Terry
Tuesday, April 29, 2008
Thursday, April 24, 2008
04/24/08 - Nuts!
Well, it looks like I have had a temporary setback in my positive progress of the last several months. On Tuesday 4/23, I went down to La Jolla to see Dr. Kipps (after 2 months), to get my blood test, and to have my monthly IVIG therapy. Things did not turn out quite the way we would have liked them to. Although I had been feeling fine, with no muscle weakness or major tiredness, the blood work showed that this was not the case. My hemoglobin came in at 11.1, which was about 2.6 less than the 13.7 it was on April 4th. We hoped that this was just a minor setback and so today I had another blood test to confirm it, and this one came in at 10.7. So, it appears that I am hemolizing my red blood cells again, and probably going back into Autoimmune Hemolytic Anemia (AIHA). If you remember from my previous posts, this is not uncommon, and happens more than half the time in patients. Mine just took a whole month to come back. Because of the decrease in red blood cells, they also decided to give me a shot of Aranesp while I was getting my infusion. Aranesp is a man-made form of a protein that stimulates the bone marrow to produce red blood cells. It takes about 1-3 weeks to have an effect, but they decided to stay ahead of the game and give me the shot anyway.
After talking with the doctor’s office today, it was decided that I will go back on the prednisone to see if we can nip it in the bud before it gets to the point where I would need a transfusion. The last time I started Prednisone my Hemoglobin was around 7.5, so I am much higher than I was back in November. This course of Prednisone will start off high, but if everything goes the way they think, I may start tapering off the dosage as early as next week. The doctor wants to keep me on Prednisone for as little time as possible. I will go in for a blood test on next Tuesday (4/29) to see if the Prednisone is working, and weekly thereafter.
There are still some issues that need to be dealt with, such as why did I start hemolizing my red blood cells. Bottom line right now, no one knows. There is also a possibility that I could become steroid resistant, and it would not work as it did before. If it keeps coming back, then we need to look at some other alternatives. Since the bulk of the red blood cells are killed by activated macrophages from the spleen, one drastic way of controlling AIHA is to remove the spleen surgically. This seems a little drastic to me, and I would like to keep all my body parts if possible. Another option is to have another round of Rituxamab with high dose steroids. According to Dr. Kipps this alternative has a high success rate, and in some cases can put you in remission for a year or two, and gets rid of the AIHA.
As you can see, this is not something where you just put together a ‘standard’ protocol, and everyone goes on their merry way. If I were being treated somewhere other than UCSD, I am sure they would have a different list of protocols that they would use. I know this may be too technical or too boring for some people, and I apologize, but if you are interested in a more detailed description click on the AIHA link on the right hand side of the page. It will definitely make your head spin.
Hopefully this will work, and I can move on to the next step. I must admit this week was an emotional letdown. Physically I am actually feeling pretty good and have played golf 7 times in the last 2 weeks. I am hoping and praying that this is only a temporary setback and I will be able to move on to the next step shortly.
After talking with the doctor’s office today, it was decided that I will go back on the prednisone to see if we can nip it in the bud before it gets to the point where I would need a transfusion. The last time I started Prednisone my Hemoglobin was around 7.5, so I am much higher than I was back in November. This course of Prednisone will start off high, but if everything goes the way they think, I may start tapering off the dosage as early as next week. The doctor wants to keep me on Prednisone for as little time as possible. I will go in for a blood test on next Tuesday (4/29) to see if the Prednisone is working, and weekly thereafter.
There are still some issues that need to be dealt with, such as why did I start hemolizing my red blood cells. Bottom line right now, no one knows. There is also a possibility that I could become steroid resistant, and it would not work as it did before. If it keeps coming back, then we need to look at some other alternatives. Since the bulk of the red blood cells are killed by activated macrophages from the spleen, one drastic way of controlling AIHA is to remove the spleen surgically. This seems a little drastic to me, and I would like to keep all my body parts if possible. Another option is to have another round of Rituxamab with high dose steroids. According to Dr. Kipps this alternative has a high success rate, and in some cases can put you in remission for a year or two, and gets rid of the AIHA.
As you can see, this is not something where you just put together a ‘standard’ protocol, and everyone goes on their merry way. If I were being treated somewhere other than UCSD, I am sure they would have a different list of protocols that they would use. I know this may be too technical or too boring for some people, and I apologize, but if you are interested in a more detailed description click on the AIHA link on the right hand side of the page. It will definitely make your head spin.
Hopefully this will work, and I can move on to the next step. I must admit this week was an emotional letdown. Physically I am actually feeling pretty good and have played golf 7 times in the last 2 weeks. I am hoping and praying that this is only a temporary setback and I will be able to move on to the next step shortly.
Saturday, April 5, 2008
04/05/08 - Still Plugging Along
Last Friday I went down to La Jolla for my IVIG infusion and a blood test. The infusion was uneventful, but the blood test was pretty positive. My Hemoglobin went up from 13.9 to 14.4. My White Count went from 40,000 to 29,000. This was all after being completely off of the Prednisone for about 11 days. My White count is the lowest it has been since June of 2003, which is a good thing. I have noticed that my lymph glands in my neck are still getting larger, but that is expected because the Prednisone was keeping them down in size.
Next week I go for an annual physical, which is the first one I have had in about 3 years. I don't expect anything major to come out of it, but you never know. I will take all of my updates and reports to my doctor and let him know what has been going on. He knows a little about what has been going on, but doesn't have the full picture. I am sure it will be an eye opener.
I have been playing golf, and started going to the gym. I went to the gym yesterday, and I may have overdone it (but maybe it was the two cups of STRONG coffee I had a breakfast). I didn't seem to have much energy all day, so I am hoping that is all it is. I seem to be pretty tired at night, and need my sleep. I will go and have a blood test tomorrow after my doctor appointment to just make sure my numbers are holding up. We are speculating that perhaps the Prednisone was artificially keeping me up, and I even though my blood numbers are better right now, I am still recovering from the ordeal.
I don't have another La Jolla visit until the 22nd of April, when I have both a doctor appointment and an IVIG infusion. I would expect that there will not be much going on until that time.
Next week also begins my 8th season as the Commissioner of the City of Long Beach Twilight Golf League. I was going to retire from that job at the end of last season, but decided to stay on one more year. My partner is my son Jeff, who works at the LB Water Department. As the Commissioner, I take care of the schedules, coordinate with the golf courses, and update all the scores. I have a great program that automates most of the chores, and after 7 years it is not very time consuming. Everything is handled over the Internet and thru email. Being retired, it gives me something to do, and really is kind of fun. Plus, it is kind of nice being King.
Fore,
Terry
Next week I go for an annual physical, which is the first one I have had in about 3 years. I don't expect anything major to come out of it, but you never know. I will take all of my updates and reports to my doctor and let him know what has been going on. He knows a little about what has been going on, but doesn't have the full picture. I am sure it will be an eye opener.
I have been playing golf, and started going to the gym. I went to the gym yesterday, and I may have overdone it (but maybe it was the two cups of STRONG coffee I had a breakfast). I didn't seem to have much energy all day, so I am hoping that is all it is. I seem to be pretty tired at night, and need my sleep. I will go and have a blood test tomorrow after my doctor appointment to just make sure my numbers are holding up. We are speculating that perhaps the Prednisone was artificially keeping me up, and I even though my blood numbers are better right now, I am still recovering from the ordeal.
I don't have another La Jolla visit until the 22nd of April, when I have both a doctor appointment and an IVIG infusion. I would expect that there will not be much going on until that time.
Next week also begins my 8th season as the Commissioner of the City of Long Beach Twilight Golf League. I was going to retire from that job at the end of last season, but decided to stay on one more year. My partner is my son Jeff, who works at the LB Water Department. As the Commissioner, I take care of the schedules, coordinate with the golf courses, and update all the scores. I have a great program that automates most of the chores, and after 7 years it is not very time consuming. Everything is handled over the Internet and thru email. Being retired, it gives me something to do, and really is kind of fun. Plus, it is kind of nice being King.
Fore,
Terry
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