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
Tuesday, January 29, 2008
Thursday, January 17, 2008
01/17/08 - Slowly moving forward
I have not updated my blog in a while because there has been nothing much going on for the last two weeks. After the last doctor visit (on Jan 3rd) I had started decreasing my Prednisone to see if I could keep my red blood count up. After 7 days I had a blood draw but didn't get the results back until 11 days (go figure). My counts are still going up (14.6 from 14.1) so that is good news. After we got those results back they lowered the Prednisone again for another week. Next Monday (the 21st) I will have another blood test to check my levels, and if they are still good, we will lower that dosage once again (I am currently at 40 and 20 on alternating days). This continues until I get down to about 5 mg / day, and then the tapering off becomes much slower.
So it appears that the anemia is slowly getting under control and because this was the greatest area of concern right now, that is good news. We all hope that I will continue to keep producing the red blood cells (and not kill them off), so that we can get over the AIHA issues. AIHA only occurs in about 11% of CLL patients, so I guess I am one the lucky ones (?). The good news is that Prednisone seems to get it under control in about 60% of the patients.
I have had some upper respiratory issues for the last two weeks, and have been on high potency antibiotics to keep me from getting anything serious. Dr. Kipps said that with all the steroids that I am taking I could have pneumonia and not even know it because the Prednisone would mask all the normal symptoms. They even did a chest xray to see if I had any fluid in my lungs, but that came back negative. Although they did see my 4 broken (and healed) ribs, osteopenia (decrease in bone density), and collapsed alveoli (the small sacks in the lungs). I told them that I didn't want to hear about any other problems because I have enough to deal with right now. Apparently none of the things they found are cause for immediate concern, but should be followed up at some point in time.
So, other than a slight cough, I actually feel pretty good. Even played golf with my Back9 buddies this week. I am also gaining my weight back (up 13 lbs from my lowest). This could be from the Prednisone because I seem to have a great appetite. So we will see if I lose some of it after the dosage goes down.
Yesterday (the 16th) I went to La Jolla and had my 5th round of IVIG treatment that took the normal 5 hours. As usual, it was uneventful.
On the 29th I have my last IVIG treatment and an appointment with Dr. Kipps. If things continue the way they are now, he will probably outline a treatment plan and timetable.
There is some good football on this weekend. Go Chargers and Go Packers.
Terry
So it appears that the anemia is slowly getting under control and because this was the greatest area of concern right now, that is good news. We all hope that I will continue to keep producing the red blood cells (and not kill them off), so that we can get over the AIHA issues. AIHA only occurs in about 11% of CLL patients, so I guess I am one the lucky ones (?). The good news is that Prednisone seems to get it under control in about 60% of the patients.
I have had some upper respiratory issues for the last two weeks, and have been on high potency antibiotics to keep me from getting anything serious. Dr. Kipps said that with all the steroids that I am taking I could have pneumonia and not even know it because the Prednisone would mask all the normal symptoms. They even did a chest xray to see if I had any fluid in my lungs, but that came back negative. Although they did see my 4 broken (and healed) ribs, osteopenia (decrease in bone density), and collapsed alveoli (the small sacks in the lungs). I told them that I didn't want to hear about any other problems because I have enough to deal with right now. Apparently none of the things they found are cause for immediate concern, but should be followed up at some point in time.
So, other than a slight cough, I actually feel pretty good. Even played golf with my Back9 buddies this week. I am also gaining my weight back (up 13 lbs from my lowest). This could be from the Prednisone because I seem to have a great appetite. So we will see if I lose some of it after the dosage goes down.
Yesterday (the 16th) I went to La Jolla and had my 5th round of IVIG treatment that took the normal 5 hours. As usual, it was uneventful.
On the 29th I have my last IVIG treatment and an appointment with Dr. Kipps. If things continue the way they are now, he will probably outline a treatment plan and timetable.
There is some good football on this weekend. Go Chargers and Go Packers.
Terry
Thursday, January 3, 2008
01/03/08 - A Good Way to Start 2008
Well, today was my visit to Dr Kipps and another round of IVIG therapy (4 of 6).
It looks like we might have turned a small corner in getting the AIHA (anemia) under control. My hemoglobin has gone up to 13.1, which is the highest it has been since this all started in October. Dr. Kipps was impressed with the level and the increase and has decided to start tapering me off of the Prednisone. Starting tomorrow I will take 40 mg instead of the 60 mg that I have been on for the last 7 weeks. I will do that for a week and then have my blood checked to see how my hemoglobin is doing. If the hemoglobin increases or stays at the current level, then we will reduce it again the following week.
You might ask (or maybe not), what happens next. Well, it gets a bit complicated. Bottom line is that taking you from 20 mg a day to 0 mg is a slippery slope and can take a while. All the while you have to watch the levels to make sure that the anemia does not start coming back. BUT, if everything goes according to plan, treatment of the CLL could begin somewhere in the 20 mg or less range. Right now the treatment would be for me to get the monoclonal antibody Rituxamab along with some sort of high dose, short term steroids. (You can get more information on this protocol by clicking on the Rituxan Therapy link on the right hand side of the blog.) Dr. Kipps feels that because of my response to the treatments this far, that I will get an excellent response from this combination of treatments.
The IVIG infusion therapy took place after all of this and lasted 5 hours. As usual I had no side affects either during or after this treatment. I felt so good we went out to dinner with my step sister and her husband (Lisette and Angelo who live in San Diego) to a Mexican restaurant almost next to the border. Needless to say, it was great Mexican food.
So now I am playing the waiting game, to see what the decrease of the Prednisone does. If my levels drop back down, then we will start looking at other forms of treatment for the anemia. But, I am believing that they will remain high, and I can get off of the steroids.
Other than a slight cough, and a little fatigue, I feel pretty good. So I guess this a good way to start off 2008.
Terry
It looks like we might have turned a small corner in getting the AIHA (anemia) under control. My hemoglobin has gone up to 13.1, which is the highest it has been since this all started in October. Dr. Kipps was impressed with the level and the increase and has decided to start tapering me off of the Prednisone. Starting tomorrow I will take 40 mg instead of the 60 mg that I have been on for the last 7 weeks. I will do that for a week and then have my blood checked to see how my hemoglobin is doing. If the hemoglobin increases or stays at the current level, then we will reduce it again the following week.
You might ask (or maybe not), what happens next. Well, it gets a bit complicated. Bottom line is that taking you from 20 mg a day to 0 mg is a slippery slope and can take a while. All the while you have to watch the levels to make sure that the anemia does not start coming back. BUT, if everything goes according to plan, treatment of the CLL could begin somewhere in the 20 mg or less range. Right now the treatment would be for me to get the monoclonal antibody Rituxamab along with some sort of high dose, short term steroids. (You can get more information on this protocol by clicking on the Rituxan Therapy link on the right hand side of the blog.) Dr. Kipps feels that because of my response to the treatments this far, that I will get an excellent response from this combination of treatments.
The IVIG infusion therapy took place after all of this and lasted 5 hours. As usual I had no side affects either during or after this treatment. I felt so good we went out to dinner with my step sister and her husband (Lisette and Angelo who live in San Diego) to a Mexican restaurant almost next to the border. Needless to say, it was great Mexican food.
So now I am playing the waiting game, to see what the decrease of the Prednisone does. If my levels drop back down, then we will start looking at other forms of treatment for the anemia. But, I am believing that they will remain high, and I can get off of the steroids.
Other than a slight cough, and a little fatigue, I feel pretty good. So I guess this a good way to start off 2008.
Terry
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