05/22/08 - Creeping along!

Just a quick update on how I am doing. On Monday (5/19) I went down to La Jolla for my bi-weekly infusion of IVIG. I have had a couple of blood tests since my last update. On May 7^th I had a test and I was at 11.0, then on May 12^th, I was at 11.7, and then Monday (11/19) I am at 11.6. So it seems that the Prednisone is helping to keep me on the upswing. After the rise to 11.7 the doctor, took me down from 80 mg / day to 60 mg / day. After the test Monday, they decided to lower my dose to 40 mg / day and see what happens next.

If my hemoglobin continues to rise, they will lower the dose once again. If it stays the same or starts going down, we are not sure what will happen then (probably increase the Prednisone). Keep in mind the NORMAL hemoglobin range in males is either 12 or 13 depending on who you talk to. So right now, I am still on the low side. I am feeling surprising well, even with that low level, but I think the Prednisone is keeping me up a little.

Overall, my numbers are still much better than back in November, so that is a good thing. My white count continues to rise (not so good), so the good doctor thinks that I should begin treatment for the CLL as soon as I can get off of the steroids. The hope is that I can be off of steroids in about 6 weeks if all the numbers keep pointing in the right direction. There is also thinking that the CLL might actually induce AIHA, so if you can get the CLL more under control, it also controls the AIHA. There are several options for treatment, so we will have to make a decision about that in the next month or so. I see Dr. Kipps on June 3^rd, and we will discuss those options in more detail then.

It is a little funny that every single small thing makes me wonder what is going on. When my heart races a little, I start to cough, or I get a little weak, all make me pause. All of those things make me wonder, 'is it the Prednisone, is it the AIHA coming back, is it the CLL raising its ugly head, am I coming down with something?' So it seems like I am always anxious, which I know is not a good thing, but it is always in the back of my mind. Then I will go a day or two with no symptoms, and I forget that anything is wrong.

A side note. There is a lot happening with the Evans Clan this week. Sarah, our youngest daughter graduates from her Interior Design program, our son Matt applied for Newport Beach Fire (keep your hoses crossed). Jeff is leaving for Spain on Saturday. Our daughter Aimee is flying over to Spain and meeting Jeff (and his friends Jared and Tim) in Spain next week. My Dad and his wife leave on a 3 week European Adventure on Wednesday, on the 29^th, they (my Dad, Lois and Jeff and Aimee) will all be in Barcelona, so there will be some sort of meeting over there of part of the Evans clan. Then the next week my sister and her partner Cherese fly to Paris for a week, then on to London where they will meet my Dad and Lois for a week there. Almost too much to keep up with.

Another, side note. Yesterday was my 3 year retirement anniversary. I can't believe it has been that long. A lot has sure happened in that time. As much as I enjoyed my job and the people at the City, I have no regrets about retiring, and have enjoyed the traveling, the golf, the going out to dinner in the middle of the week, 2 & 3 day mid-week trips to here and there, home improvement projects, and time with the family. In the back of my mind, I knew that the CLL would become an issue, and I am glad that I had the opportunity to retire somewhat early and start doing all the things that you want to do when you retire.

05/06/08 - Somethin’ is a workin’

Today we went down to La Jolla for my bi-weekly IVIG infusion, and for the blood test that tells me how I am doing. And the envelope please….my hemoglobin is going UP. I went from 9.3 on Thursday to 11.0 today. So the consensus is that the Prednisone is working. The other theories are that the IVIG also helps and the shot of Aranesp that I got two weeks ago is kicking in. So, even though we really can’t be sure which of the pieces are making a difference, a difference has been made.

So, now the short and sweet readers can stop reading.

The plan is now to have a blood test on Monday to validate the continued rise in the hemoglobin. If it continues to rise, I will probably start tapering off the Prednisone next week. My rough guess is that will take until the end of June. If you remember, this is exactly what happened to me at the beginning of the year. The difference this time is that when I get to a good hemoglobin level, and I have tapered off of the Prednisone, Dr. Kipps will start a Treatment Therapy for the CLL. There is some belief that the AIHA can be triggered by the CLL, so the theory is that if you can control the CLL you can control the AIHA. But in order to treat the CLL your AIHA must be under control. So there may be a small window of opportunity in which to do this. I won’t get into the treatment protocols at this time because even the ‘detail’ readers may glaze over.

So, now that I am back on the mend, we are off to Vegas Baby. We are going with Donna’s parents to visit Donna’s sister Nancy and her son and daughter. We actually just talked about doing this last night if I was on the upswing. But this is how you can operate if you are retired.

05/01/08 - and the Roller Coaster Continues

Today we went down to La Jolla for my blood test and type and cross match. So I just donated 5 tubes of blood, got in the car and drove home. On the way home we stopped in Solana Beach and ate at Milton's Deli. Milton's is the company that makes the good whole grain breads. But I digress. After we got back on the road, I got a call from my case manager. She informed me that my hemoglobin had dropped, (from 9.6 to 9.3), but it was not enough to warrant giving me a transfusion. In conferring with Dr. Kipps, they seem to think that the prednisone is kicking in and the AIHA is beginning to stabilize. So, for right now, I am not in need of any additional treatment. I don't have to go back down on Friday for a transfusion, or next week for a Rituxan treatment. I will stay on the current dose of prednisone until my counts start rising, and then they will start tapering me off again. I will also go down to La Jolla next week for a bi-monthly infusion of IVIG therapy (which will also help control the AIHA).

They do want me to get another shot of Aranesp, which is the protein which induces the production of red blood cells. We are trying to get this scheduled for up here at my alternate doctor on Friday. Otherwise, I will have to drive back down to La Jolla and get the shot tomorrow or Saturday.

I still feel fine, and played 27 holes of golf yeserday, so I am not letting any of this keep me down.

Terry