12/30/08 – End of the Year Update

I guess the good news is that I haven't posted in a while. Since everything is reasonably stable, and I only go down to La Jolla once a month, there is not a lot to report. Today I went to La Jolla for my monthly IVIG infusion and had a doctor visit. The infusion was uneventful as usual, and took less than 4 hours. My visit with the doctor was also a good one, with all my numbers within normal ranges and my spleen and lymph glands about the same size as last time. So this means that I am still in Partial Response, and the Autoimmune Hemolytic Anemia has not returned. A good way to end the year. End of short report.

A quick update on my Dad. As of the last report he was still in the hospital, but he came home the first week of December. Although he is on the road to recovery, there is still a lot of care giving going on. According to my Dad, 'there is a constant stream of people coming and going'. Most of the medical problems related to the surgery have cleared up, and now the issue is building up his strength physically and mentally. The good news is that is that he is doing so much better than two months ago, or even a month ago. Donna and are going up next Monday for a week and we will get to spend some time with him. My sister and Cherese and Lois have been on 'Dad watch' since September, and I am convinced that he wouldn't be where he is today without their love and support.

A bit more detail from my doctor's visit today. Although my white count is still around 9, my red count (hemoglobin) is around 15, and my platelets are up, this only tells part of the story. My bone marrow biopsy still shows leukemic cells, so we still know that the CLL is lurking around. The fact that my lymph glands and spleen are still slightly enlarged also point to some residual involvement. The good news is that I don't have any other physical signs like daily night sweats, fatigue, fevers or respiratory issues, where before treatment I did have some of those symptoms. I feel really good, compared to how I felt a year ago.

Dr. Kipps does feel that because I only got a partial response (PR) from the treatment over the summer, I will probably need additional treatment sometime in 2009. As to when that will be, he couldn't say. He said that hopefully this response will last a long time, and could even last through 2009. But because of the chance that I may need treatment he wants to start thinking about what that may be. He went through about 6 different treatment options, and ruled out 2 right away because of either the existing enlarged lymph glands or the autoimmune hemolytic anemia. All of the three remaining are not without risk, and I would have to be monitored closely to make sure that I didn't have any life threatening side effects. I might go into some additional information for you 'detail freaks' in a subsequent blog, but it gets quite technical quickly. The good news (if you can consider it that) about needing treatment is that we are PLANNING for it now rather than waiting until I am in dire straits. Dr. Kipps has always said that he will never let me get as bad as I was before, even if it means starting treatment a little early. The down side to all of this is that it makes planning things for this year a little risky, but you can't stop living life, and we already have things planned thru March, with more adventures possible in December.

Dr. Kipps was so pleased after the exam and the blood tests that he said that he would see me in TWO months. It has been a while since I have seen him every two months, so that is another good sign.

I hope everyone had a Merry Christmas, and I hope that you all have a great New Year.

Terry

11/26/08 - Thanksgiving

It has been a while since my last post, and quite a bit has happened. First off, I want to let everyone know how my Dad, Paul, is doing. As you may remember, he went in for some abdominal surgery on September 11^th, and as of today he is still not home. The details of his ordeal would make for an interesting article in a medical journal. The good news is that as of yesterday, he has been moved to a rehab facility and his next move should be home. We have all learned that it is not wise to give estimates on when things might happen because something always seems to get in the way. We are hopeful that he will be home for Christmas.

Yesterday I had my standard monthly IVIG infusion and I also had an appointment with Dr. Kipps to go over the results of my bone marrow biopsy. The short report is that all my blood numbers look good, my lymph glands are the same as they were in September, my spleen is only slightly enlarged, however the bone marrow does show some evidence (12%) of CLL cells. It was decided to watch my numbers closely for the next month and see if there are any changes. If there are no changes we will just watch and wait. If there are changes, then we will have to look at another round of treatment. The good news is that I feel great, even walked 18 holes of golf last week. So, we will just continue to wait. End of Short Report.

The best news I could have gotten was that there was less than 3% involvement in the bone marrow. That is considered a Complete Response (CR). At my first bone marrow biopsy in 2007 I was at 80% involvement, so at 12% that is really quite an improvement and is considered a Partial Response (PR). Once again I have become a medical quandary. What do you do if you still have a 12% involvement? Do we treat now? If so, with what? We all agreed that we should give it a month or two and see what my numbers do. If they remain stable, then we should wait for a longer period of time, if they change, we should look at an additional treatment. He was a little concerned about the drop in hemoglobin from 15.4 to 13.9. He wants to watch that closely (a blood test in two weeks) to make sure we have the Autoimmune Hemolytic Anemia still under control. He thinks it is under control because of some other blood test numbers, but doesn't want to take any chances (what a refreshing approach). All of my other blood work is within normal ranges. White count 8,100, Platelets 165. My lymph glands are the same size they were at the September appointment and he once again indicated that this might be the size that I now have to live with (they are much smaller than before the treatment). When we cornered him about what a NEXT treatment might be, he basically told us, let's cross that bridge when we come to it, but also indicated that there are several different options that would be available to me.

I also received a flu shot, although he commented that studies have shown that flu shots may not benefit someone that has a compromised immune system. He said it is better to have those people around you get the shots, so they don't get it and pass it to me. He also indicated that unfortunately the most contagious time for a person who is getting the flu, is right in the beginning when they are still walking around, going to work, etc. So they don't even know it until it is too late. He said that the IVIG (IV Immunoglobulin antibodies) I am getting is probably the best protection from the flu.

As we were leaving another patient of Dr. Kipps passed us and after he walked by us, Dr. Kipps told us that he was in his 7^th year of a Complete Remission. So, we know that I can be put into that state for a long period of time, it is just finding the right treatments to achieve that goal. I feel great, playing golf, traveling back and forth to Seattle and spending time with our friends and family.

This Thanksgiving we will have all four of our children with us for the first time is I am not sure how long. Matt from Seattle and Aimee from Orlando made the trip out this year. It may be our last family get together this year, because it looks like they will both be stuck at their homes during Christmas. Last year at this time I was in pretty bad shape and this year I really do have a lot to be thankful for. I thank God for being on the road to a Complete Remission, having a great family and great friends. I also know that my Dad will be home soon and back to dancing.

HAPPY THANKSGIVING

Terry

 

10/31/08 – Never a Dull Moment

Well, there has been a lot going on with the 'Evans Clan' in the last month, and most of it has nothing to do with me. As some of you know, my Dad went in for abdominal surgery on September 11^th (maybe that should have been the clue). Unfortunately the 5-7 day hospital stay has turned into over 7 weeks. I won't bore all of you with the many issues, but suffice to say, just about whatever could go wrong, did. Some of the details were; wounds not healing, leaks in the intestine, drains having to be surgically inserted, clots in the lung and leg, having to be intubated and placed on a breathing machine, and having a tracheostomy put in. So, after 4 weeks on a surgical floor, then 3 weeks in ICU, today he has finally moved to an Acute Care facility. It is kind of a rehabilitation facility for people that still have some major medical issues. The goal is to wean him off of the tracheostomy and get some of his strength back. The estimate is that he will be there 2-4 weeks and then he should be able to come home. You can imagine how weak you would be if you had to spend 7 weeks lying in a hospital bed. I know that he is going to get through this as I have never seen a more determined individual, and he knows that it is going to be a long road, but we are finally starting to see a light at the end of the tunnel. He has a great support system, and the fact that my sister and her partner, Cherese, live up there has made this much easier to manage. My dad's wife Lois, has been a real trooper through all of this. Donna and I have made two trips up there so far, and we are going back up next week for a week. At various times, all of our four kids (Matt doesn't really count since he now lives up there) made the trip to Seattle during this ordeal, and were all able to visit my Dad when he was alert.

All of my issues right now seem to be minor compared to what has been going on with my Dad, but I have had some things happen. On Wednesday, the 29^th, I went down to La Jolla for my monthly IVIG (immunoglobulin) infusion, and of course they did the standard 8 vile blood test. I got most of the results back that day and my numbers are interesting. My white count is down to 2.9 from 6.9 (normal is 4-10), so now I am a little under normal, the first time that has ever happened, but not that uncommon. My hemoglobin has climbed up to 14.7 which is well in normal range, and a sign that my autoimmune anemia is on the run. My platelets are well in the normal range, but there are a couple of numbers that are not so good. My Absolute Neutrophil Count (a portion of what makes up the white count) is low, and my Absolute Lymphocyte count is high, which probably means that there is still CLL activity in the bone marrow. Now none of this has been evaluated by the doctor, so I am partially speculating here. On November 12^th I will be having another bone marrow biopsy which will be able to accurately tell what the activity is in the bone marrow. However, I won't get the results of that until two weeks later. I am also guessing that I will need another round of treatment (of a different kind). After talking to my case manager on Wednesday, she indicated that there is no immediate rush for any of this and an additional treatment could wait until after the first of the year.

Another item of interest is that I have been noticing that my right eye vision has become somewhat cloudy over the last several months. Today I went to the eye doctor and she confirmed that I have a cataract in my right eye, and will probably have to have cataract surgery in the future. It is not enough to make me not be able to see (I still have one good eye), but it is just a little blurry if I close my good eye. It is more than likely that the steroids that I have been taking accelerated the creation of the cataract that was slightly there last August. So just another wonderful side effect.

Did anyone catch the wretchedly bad misspelling (on purpose, but I thought it funny).

Terry

09/23/08 – 3 down and NONE to go!

Well, after my doctor's appointment today it looks like there will be no more treatments for now. My white count is down to 6,900, my hemoglobin is at 13.8, and my platelets are at 254,000. My lymph nodes are still palpable and the same size as last month, but they are very small. My spleen is still there, but also very small and MUCH smaller than when all of this started to go haywire. Dr. Kipps said that my lymph nodes and spleen may just be this size. He did not see any value in having another treatment since the only real change was my white count dropped from 13.0 to 6.9. It does appear that we have the Autoimmune Hemolytic Anemia and the CLL under control for now. I will not have another blood test (unless I start to look or feel bad) until November 12^th, which is when I am scheduled for my bone marrow test. Dr. Kipps thinks I will be fine until then.

He has taken me off of 2 prescription medications, but still wants me to have monthly IVIG and Pentamidine treatments, which I will have next Wednesday. If you remember, those are no big deal, just an all day event. Both of those treatments are to protect me from infection. My white count is lower than I can ever remember (normal is 5,000 to 10 or 11,000).

The 3 rounds of Rituximab and High Dose Steroids that I received is a protocol that was developed through a Clinical trial at UCSD that ended last year. The dosage levels that I got were determined through that trial. I did ask him how long this remission is supposed to last, and he said 'it depends on a lot of things'. Even though it is not a definitive answer, it was the one I expected because everyone responds to treatment differently. We did talk a little about options after this, and he has a lot of them at his disposal and I am confident he will chart out the next course as well as he has done so far.

In mid November I will have the bone marrow biopsy which will determine what involvement there is at the bone marrow level (where the bad cells are produced). This test will determine how much good the treatment REALLY did, and if I need any additional treatment at this time. So, once again, we will be anxiously awaiting the results of the test which we will get at the end of November.

At the end of my appointment, Dr. Kipps said he was happy with my progress considering where he had started with me. His comment was something like 'you were as white as a sheet and you weren't doing very well'. An understatement, I think. So I got up to shake his hand goodbye, and he says to me ' can I have a HUG?'. Now how many doctors have you known or seen that have done that. We were absolutely floored. What a guy.

A side note; my Dad has been having his own medical issues. He went in two weeks ago for a lower intestine resection (stomach surgery), and has had nothing but complications since the surgery. Just this week he has a taken a turn for the better, but still probably has two more weeks in the hospital, then rehab. Please keep him in your thoughts and prayers for a speedy and complete recovery.

Terry

 

 

 

08/30/08 – Third Round Complete

I am pleased to report that the Third Round of treatment went as planned.  My White count is down to 13,600 which is the lowest it has been since around 2000.  My hemoglobin is at 13.6 which is within the normal range for me.  It seems that the Rituxan and HDMP (high dose steroids) treatment seems to be getting the CLL under control, and also controlling the Autoimmune Hemolytic Anemia (AIHA). The problem is that my counts are bouncing around a little, and there was mention of a fourth round of treatment if the numbers didn't look good at my next appointment on September 23^rd. I am generally feeling pretty good, just having the normal reaction from the high dose steroids (tired and cranky). End of Short Report!

 

There always seems to be some sort of hitch associated with medical issues.  On August 12th I had my monthly appt with Dr. Kipps and he said I was on the right path, and my lymph nodes and spleen had both shrunk substantially, which is good.  On the down side, my white count at the beginning of the second round was at 23,000. Two weeks later when I had my appointment with Dr. Kipps it had gone up to 30,000 and my platelets were a little low.  He said he would have liked to have seen a more definite decrease after the second round, but he also said it could just be part of the cycle. For the first time he mentioned that we might want to consider a FOURTH round of treatment.  This was the first time we had heard of this, and so we were a little surprised.  He indicated that if we were almost there it would be better to have one more treatment to get rid of any residual cells in the bone marrow and try to have a more complete response.  Unfortunately it makes it difficult to plan much of anything when you don't know what is going on. He will not be able to determine if I need a fourth round until my Sept 23rd appointment with him.  At that time he will determine if I need another week of treatments which would start on Sept 29^th (which we have already scheduled, just in case).  So for now all of that is up in the air. 

 

While I was down there for the infusion the good doctor stopped by and chatted with me for a while going over the results of my blood test on Monday (the first day of treatment). He once again said he thought things were going well and we would just have to wait until after the 23^rd to make the decision about another round. If you ask me what my 'gut' feel is about a fourth round, I would say I will need it.  I am hoping not, but the fact that Dr. Kipps has already brought it up means that he is seriously considering it. So just when you think you may have a breather for a while, things change.

 
 

Once again we stayed down in La Jolla for the week.  We cooked in two nights, went out to La Jolla for dinner at a GREAT Italian restaurant recommended by my friend Kevin.  We also went out with Lisette and Angelo one night, so it was a nice relaxing getaway.  Speaking of getaways, we are going over to Catalina on Tuesday or Wed for 5 or 6 days (depending on how I feel).  We will be staying in a cabin in one of the coves with our friends John and Toni, and meeting Ro & Sue and Bruce and Connie who are coming over on the Orfila's new sail boat.   

 
 

I am generally feeling pretty good, a little tired and having some residual steroid after effects, but I now know that those will taper off and I will be back to my normal cheery self. 

 
 

All for now.

 
 

Terry   

 

08/02/08 – Round 2 has been completed!

Last Monday (July 28^th), we went down to La Jolla for my second round of Rituxan treatment. If you don't remember, the treatment is a weeklong and is given for 3 consecutive months. So far it looks like the treatment is doing what it is supposed to be doing. Before they start the treatment they run a battery of blood tests to make sure that your numbers are all going in the right direction. It turns out that my numbers are all looking good. It also appears that the after effects are less this time than after the last treatment. (End of the short report)

The more detailed report -- My white count is down to 23,000, which is the lowest it has been since 2003. (Normal is between 5 and 11,000, and mine has been as high as 787,000). My hemoglobin is at 12.9 which means that my AIHA (autoimmune hemolytic anemia) looks like it is under control. My platelets are over 300, which is another good sign. Other than sitting in chair for 6 -7 hours a day it was a pretty uneventful week. I had no real side effects, and the treatments went according to plan. Every day I got
Cimitedine (for upset stomachs, which is really Tagamet, except much stronger), and HDMP high dose steroid, Solumedrol. On days 1, 3 and 5 I got my dose of Rituxan (790mg). On day two I got the nebulizer infusion of Pentamidine, which is an antibiotic to protect me against pneumonia. On day 4 I got my monthly dose of IVIG (immunoglobulin). So as you can see, there wasn't much down time on any day.

This time we decided to just stay in La Jolla for the week (I know, a tough decision). Even though it is not a bad drive down and back, it is still about 1 ½ hours each way and when you have to be there at 8am, it means you have to get up pretty early to get down there. It turned out to be a very good decision because it was just so much more relaxing to not have to worry about the travel (also saved a lot on gas). We wound up staying in a condo, with a full kitchen, so we had two meals in, made all of our breakfasts and lunches, so that saved us some money as well. So when we got done each day around 3:30 we could just drive around La Jolla, or go back to the condo and relax. We also had some time to visit on different nights; dinner with Lisette and Angelo, dinner with Sue and Duane, who also spent the night, and dinner with Rick and Cindy, who were in Carlsbad for their annual stay. All of those visits made the time go much quicker.

I seem to be feeling a little better after this round of treatment. It took me about 3 days to start feeling a little normal last time, and even though I am not 100%, I think I notice a difference for the better after this treatment. So I am hoping the recovery time will be even quicker this time.

In two weeks I will have my monthly visit with Dr. Kipps and then two weeks after that I will have my last round of treatment. So far, this looks like it is having pretty positive results. Thanks to everyone for the text messages, emails, phone calls, visits, and prayers. They are all very helpful and uplifting.

Terry

07/16/08 – Dr. Visit & Status

Yesterday we went down to La Jolla for my monthly visit to Dr. Kipps to check on how I am doing. According to the good doctor I am doing fine. There are some issues that he can't explain, like why my red count was 12.5 when I started the treatment, then the next week it was 14.5, and then yesterday it was 12.9. I asked him if that was bad, that I seemed to be going back down again, and he said that he thought it was a combination of the 14.5 test being performed at another lab (not as good as his), and he even thought the test might have been wrong. He told us that the 12.9 number is where he actually expected me to be. I will do another blood test next week just to be safe. He did say that he thought that I was NOT hemolizing (killing off the red blood cells). He did say that my lymph glands and my spleen have both shrunk in size.

My white count, which no one seems to worry about, is at 52,900, and it was at 48,600 on the first day of the treatment. The higher count is not cause for alarm because the treatment causes the white cells to come out of hiding from the lymph glands and the spleen. Once in the blood stream the Rituxan attacks them and knocks them out. So there is some expectation that the WBC would be higher in the beginning, but then start to decrease.

Dr. Kipps was happy with the results so far, and is still confident that this treatment is working.

After the treatment I was out of commission for about 2 ½ days, which was expected by everyone but me. I have been slowly getting better, and right now feel about 95%. I even played golf and walked 18 holes, which is the first time I have walked since around last September.

My next adventure begins on July 28^th for my next 5 days of treatment. Assuming nothing major happens between now and then I won't have much to say until that happens.

Terry