05/21/09 – An Anniversary and an Update

Yesterday I had my two month visit with Dr. Kipps and the results were not as great as we had hoped they would be. My white count continues to rise (now at 67,000 from 38,000 in March), my lymph nodes and spleen are slightly larger. All of these things point to the disease returning. Although I feel good and have no other blood count symptoms, it is a sign that some treatment will have to begin sooner than later. Dr. Kipps gave us two papers on two new Clinical Trial therapies that are having promising results. He wants me to review them and at my next visit in June probably make decision if I would want to begin one of these two clinical trials. End of Short Report.

All of this is not really unexpected, but the waiting for another round of treatment to begin is frustrating at best. It is perplexing that I feel so good, yet in the background the beast is lurking. One question that some people may ask is why not just starting now, since you know that you are going to have to have it anyway. According to Dr. Kipps, right now there is no 'red flag' that is pointing to immediate treatment. I am nowhere near where I was in October of 2007. Also the two clinical trials are both ending Phase I status, and will begin Phase II in the next month or two. I think he is waiting for that to happen.

The whole issue of Clinical Trials is a bit of a complicated situation. Since there is no standard treatment for CLL, Clinical Trials offer the best hope for a longer lasting remission and ultimately a cure. I have always thought that I might like to be a part of a Clinical Trial as part of my treatment. The complexities of the two Clinical Trials that Dr. Kipps is offering to me are very difficult to explain let alone understand. One has to do with removing some of my white cells, treating them, and then reinjecting them back into my blood stream. Then after that is done, a light course of chemotherapy is given to go after the remaining cells. The second treatment is an oral drug that targets specific markers on the blood cells. This is the most simplistic explanation that I could come up with. Another issue that makes a Clinical Trials decision difficult is that Dr. Kipps is not pushing either one, he is letting me choose. On one hand you could say, well he is the expert, what does he think?, but on the other hand, you can't 'force' someone to go into a Clinical Trial, it has to be their 'choice'.

I could be retreated with the Rituxan and HDMP, but that will probably only give me a short response. I could also do a more standard treatment, but that would probably also have a partial response.

On an upbeat note, May 21^st was the four year anniversary of my retirement. Even with all the medical issues that I have gone through during that time, I wouldn't trade my situation for anything. Just this week I played golf twice and walked both times. May 21^st is also my aunt Evelyn's birthday, but being a gentleman, I won't say how many years. My Dad continues to improve medically, and although he still has a feeding tube in his stomach he is taking most of his food by mouth (although very slowly). The hope is that the tube will be removed very soon, and he will be all on his own. He and Lois actually went to the symphony for the first time in 9 months last week, so you know he is improving.

So, in the next month, I will have my monthly IVIG, study up on the clinical trials and try to form an opinion on which one might work the best for me. Some of it might come down to logistics, how many days I would have to spend in La Jolla. Since it is a Clinical Trial, the drug costs are covered by the Cancer Center and the drug company, so that is not an issue.

Terry

 

03/31/09 – Why can’t things be simple?

Today we went down to La Jolla for blood work, IVIG and a visit with Dr. Kipps. The IVIG infusion was no problem as usual and for the most part the visit with Dr. Kipps was fine. The blood test results were good and not so good. My hemoglobin and platelets both remain at a good level. However, my white count has risen from 17,000 to 38,000. My lymph nodes and spleen are about the same size as last month, which is good news. So the question that Dr. Kipps pondered was why my WBC went up so much in a month, and yet none of the other markers / indicators had changed. So, he wants to once again wait a month and see what happens next. End of short report.

Dr. Kipps did feel that I may be fighting off an infection. The white blood cells are made up of a number of different components, one of which are the neutrophils which are the most abundant type of white blood cells found in humans and form an essential part of the immune system. In patients with leukemia the neutrophils can be low, but in my case today, they were high. He felt that one reason why my total white count was higher was because my body was fighting an infection, and in fact, I have felt like I have been getting a cold for a day or so. He decided to let me do my monthly IVIG in late April, and if the numbers are holding steady, not see him until late May.

Dr. Kipps once again discussed staying ahead of the treatment game by getting a list of possible treatments in place for me. He discussed with us 3 different possibilities that I may be a candidate for. One of the options is a Clinical Trial of a new drug that they are testing.

I am continuing to play golf as much as I can and we are still traveling as much as we can.

My Dad continues to regain the strength he lost in the hospital. He is taking longer walks, driving places and playing tunes on his organ. We are thankful for his continued recovery.

So, once again I am on this month to month watch and wait. Don't get me wrong. I am grateful for feeling good right now, but you feel like there is this constant threat of something going wrong, and you never know when that might happen. It kind of feels like a Twilight Zone episode.

Terry

03/04/09 – An Ongoing Saga

Well, it has been a while since my last update and that is because nothing much was really happening until yesterday. Since my last update I have had two IVIG infusions with no consequences. Yesterday after my IVIG infusion I did have an appointment with Dr. Kipps, and it was the first time I had seen him since December. I had my normal blood work drawn and he gave me the results after my physical exam. My white count only went up slightly, from 17.4 to 17.8, my Red Count was still in the 15's and my platelets actually went up a little. So that was the good news. However, after my physical exam he noted that my lymph nodes (in various places) and my spleen have increased slightly in size. He indicated that he didn't like that change and it probably means that the CLL cells are on the move again. He wants to see me in 6 weeks to see if there have been any changes in that period of time. At that time he will decide if I should begin another treatment. As I already knew, it is not a matter of if I need treatment, but when it should be initiated. When I asked him what he had in mind, he gave the normal answer, 'it depends'. He wants to study all of my genetic markers from my last bone marrow biopsy, and also look at some other blood test results to try to figure out which treatments I would respond the best to. He really wants to be ready for this so he can begin treatment when I am still feeling well. The great thing is that when I get to the point of treatment I WILL have a plan and it will be proactive instead of reactive. He did say that if I needed treatment after my next visit he would like to begin late spring or early summer. I do know that most of the treatments that he is considering are much harsher than what I have had so far. So the waiting continues. It seems I go on like this month to month. It is a hard way to live your life, but as they say, I guess it beats the alternative.

On a more exciting note, our oldest daughter Aimee got her transfer from Orlando to Los Angeles (she works for Delta Airlines). So last week, she and her boyfriend drove across county in a 26' truck towing her car. After unloading most of the stuff (thanks to Greg, Jeff and Kristen) in a storage unit, she has settled back in the HB homestead after being gone for over 10 years. We will see how we all get along, but it should be fine.

A short update on my Dad. He is still slowly progressing towards a complete recovery. He is able to get around using just a cane (don't stand in his way), and he is slowly regaining his strength. We went up and visited him in mid February and unfortunately he had a stomach bug of some sort while we were there, so it wasn't the best of times for him, but it was really great to spend some time with my dad and his wife Lois, and my sister Rebecca and her partner Cherese. We also got to see a lot of Matt while we were up there, so it was a pretty good visit.

Not knowing what the future may hold for me in the way of potential treatments, we are taking advantage of the time that I am feeling good. We spent some time in the Desert in February, as well as some time in Seattle. In March we are going back to Palm Desert for about a week, and then on to Carmel for 4 days, and home by way of Fresno to see my aunts. Unfortunately I am also trying to schedule my cataract surgery for some time in April. It seems that the steroid treatment that I was on helped accelerate my cataracts. My right eye is especially bad, and I have to get it done sooner than later.

All for now

Terry

01/30/08 – Some New Info

There really has been no change on the medical front for me, but I did want to update a couple of things. First of all my Dad is slowly improving every day. He has now begun eating SMALL amounts of food. He still has the feeding tube in his stomach, but he passed his swallow test (relearning to swallow after the tracheotomy), and now there will be a slow transition to real food. He is also slowly regaining his physical strength. It is a slow process, but everything is moving forward a step at a time. He has begun taking short walks (inside his home) using a cane. He has also sat at his organ, and is able to play for a short while. Secondly, my father-in-law Don, celebrated his 90^th birthday last week. Not one to be sitting around, he played golf on his birthday (one of three times that week), and then went to a GYRO meeting that night. We had a family dinner for him on Sunday night, and it was a fine celebration.

I did go to La Jolla this week for my monthly IVIG infusion, and that was uneventful. However, as part of that procedure, they do a routine series of blood tests. One thing of note was that my White Count has risen slightly from about 9 to about 17. This was not totally unexpected, and I will know more when I see the doctor the first week of March. It was not a big enough concern to contact the doctor, so that is a good thing. My Red Count and my Platelets remain well within normal ranges so it looks like the anemia is still under control. Otherwise, I am feeling quite well. Beginning New Year's Eve I had a major cold which lasted about three plus weeks, but luckily it did not turn into anything major, like pneumonia. Unfortunately it happened right in the middle of a planned trip to Seattle, to see my Dad, so we had to reschedule until February.

Lastly, I have added a couple of new functions to my blog to make it more automated and user friendly. I have added a link on my blog that will add your email address to a website that will automatically send you an email when my blog gets updated. It is pretty easy to use, you just put in your email, and click SUBSCRIBE, then an email will be sent to you asking you to confirm that you want to receive an email alert whenever the blog changes. Respond to the email by putting the link sent to you in a browser. That is all there is to it. If you sign up this way the update emails will no longer come from my AOL mail, but from my Google mail ID, which is terrymevans@gmail.com . This is because my Blog is in the Google Blog Application called Blogspot. The main problem with this method of notifications is that whenever I change ANYTHING, a picture, a misspelling, publishing a comment, a notice will be sent saying the blog has been updated. While technically correct, it can also mean that I found a spelling error and corrected it. I will continue to send out my AOL mail updates until people tell me that have signed up for and like the other method. If all of this is too confusing, don't worry about it, and I will keep sending out emails the old way.

The last thing I have added is a link to translate my blog into Italian. Sometimes it may be easier for my non English speaking friends to read my site if it gets translated.

All for now,

Terry

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