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

04/29/08 - More Disappointing News

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

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.

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

3/22/08 - Free From Steroids

It has been a while since I have updated my Blog, but that is because nothing much is going on. In my last report I told everyone that I was going to be completely coming off of the Prednisone, and then checking my blood work to see how I did with NO help. My blood test last week had my Hemoglobin at 13.9 (still very good) and my White Count at 40,000 (the lowest it has been in over 4 years). So with those tests, I was completely taken off of Prednisone as of last week. I feel fine, with no weakness or shortness of breath. Everyone tells me that I have a ‘rosy’ complexion and I am looking good. I have noticed that my lymph glands in my neck have gotten a little larger, but this is probably expected as the Prednisone was keeping them down. But for right now, it looks like we have the Autoimmune Hemolytic Anemia (AIHA) under control.

I go down to La Jolla next Friday for my IVIG treatment, and to get another blood test. All indications are that this test will come out fine, and I will not have to go back on Prednisone. I will then see Dr. Kipps at the end of April, at which time we will discuss what the treatment plan (if any) will be. If my red count stays up and my white count stays down, he may decide not to do anything until those things change.

Overall, I am doing pretty well. I am still playing golf on a regular basis, and we just got back from a week in Fresno (visiting my wonderful Aunts and my Dad and his wife) and Monterey for a Credit Union Conference. I felt fine even after all of that traveling. Donna has officially retired as of February 24th, so it has made traveling a little easier.

I know that several of you have recently given blood and the Red Cross and I thank you for the donation.

SIDE NOTE
Both Donna and I belong to a List Serv from the ACOR (American Cancer Online Resource) group specific to CLL. On this list, people with CLL or their caregivers post questions to members of the list. People on the list are in various stages of the disease, all the way from just being diagnosed, to having tried all the therapies and treatments that are out there. Since everyone responds differently to treatment, you can get a wide range of answers to your questions, so you have to sort out the responses and figure out how they pertain to your particular situation. However also on this list are several people with a research and/or medical background that will respond to questions. One of these people is Dr. Terry Hamblin from the UK. On any given day there might be 30% of the questions directed specifically at him, and on any given day, there may be 25% of the responses from him. It is unbelievable to me that in this day and age that someone would take the time to lend his expertise to total strangers that are only drawn together by this disease. It does help that he is an EXPERT in the field, has an active medical practice and has written many papers on the disease. To learn more about Dr. Hamblin, you can click on the link on the right hand side of the page.

This month he announced that he was retiring and was going to stop responding to questions that are put on the ACOR CLL Board. This was a very disappointing day for the Evans family and I will explain why. When I was the sickest and it seemed that we were not getting the correct information or the correct treatment, Donna went outside the box and emailed Dr. Hamblin directly and gave him my lab numbers and what treatments that I had been given. She asked him to confirm her suspicions about my Autoimmune Hemolytic Anemia, and what treatment he would recommend. He quickly responded to her email, confirmed her suspected diagnosis, told her what treatment he would recommend, and said that we should do it QUICKLY. Right after that email, I went to see Dr. Kipps for the first time. Not surprisingly his diagnosis and treatment were exactly the same as Dr. Hamblin's. As for the QUICKLY part, you may remember that Dr. Kipps would not let me leave his office without me agreeing to be admitted to the hospital for a transfusion of 4 units of packed red blood and high doses of steroids. In the past, I have not discussed the seriousness of my condition at that time, but I can tell you (and Donna will definitely concur) that I was very close to checking out. If left untreated, I would have probably gone into cardiac arrest in one or two days. If it weren't for the persistence of Donna, the agreement of the diagnosis by Dr. Hamblin and the action of Dr. Kipps, I am convinced I would not be here today. That is why Dr. Hamblin is so special to us.