08/04/09 – Another Bump in the Road

Today I had my 6 week visit with Dr. Kipps and an IVIG infusion. It wound up being a long day for more than one reason. We fully expected to go down there and get more information on the Clinical Trial ABT-263 and make a decision on when I might start that treatment. This was at least the desired plan, and then we got my blood results. My White Count has risen almost 50,000 to 122,000, and more importantly my hemoglobin has dropped from 15.1 to 11.7. This is a sign that my AIHA (autoimmune hemolytic anemia) has raised its ugly head again. To confirm this, they also ran another test (A Coombs test), and this turned out to be positive, confirming the AIHA in its early stages. So now the plan is to treat the AIHA, starting with a bone marrow biopsy tomorrow (they don't mess around), and starting me once again on the lovely drug Prednisone. As soon as the AIHA gets under control in 6-8 weeks, we will once again look at beginning treatment (of some sort). End of short report.

This really caught us off guard. I have been feeling great with no indication that the Anemia was returning. I have been playing a lot of golf, tearing out part of our backyard to lay 100 sq feet of pavers, and generally feeling normal. We really expected this trip to be a discussion of the Clinical Trial, when it might start for me, and what tests I would have to have before the trial began. During my physical exam, Dr. Kipps did find that my spleen was slightly enlarged (not good), but my lymph nodes were a mixed bag of slightly larger, the same or in some cases slightly smaller. He indicated that we may wait a little longer to do ANYTHING, including the clinical trial. Of course this was his opinion without seeing my blood results. Apparently the blood testing machine broke down and my blood results were not available during the exam. So we were feeling pretty good, and marched off the Infusion Center for my monthly IVIG infusion. About half way thru we asked my nurse if she could check and see if my blood test results were available yet, she checked and brought them to us. I honestly thought she had brought the wrong person's results. I double checked to make sure my name was on the paper. Unfortunately it was. To say that we were shocked is an understatement. We expected a slight increase in the WBC, but never even thought that the hemoglobin would be low.

I immediately put a call in for Dr. Kipps nurse and left a voicemail saying, 'Did you see my blood results'? We finished up the infusion and marched back to the clinic to get some reading of what was going on, and what the plan should NOW be. We caught up with his nurse and she had not seen the results, so when I told what they were, she said 'I will go talk to Dr. Kipps'. Donna then said to me, 'they are going to want to jump on this right away'. Dr. Kipps nurse came back out in a couple of minutes and said, 'you are coming in tomorrow for a bone marrow biopsy, and we will more than likely start you on prednisone tomorrow'. Just great. Here I thought we were going down the clinical trial / treatment road, and now there is a detour in the road and we are going back to the AIHA treatment road. I have been on that road before and I really didn't plan on going on it again. All of this is not completely unexpected. Those of us with CLL who get AIHA (about 11%) wind up having it recur more often than not. Unless you can get rid of the CLL (which really means put it in a remission state for some period of time), chances are AIHA will return.

Even though the clinical trial ABT-263 is off the table for now, it is not gone forever. There is a high probability that I will be eligible for the trial when I whip this AIHA issue. That may actually be a good thing. The trial officially opens August 10^th, so they may have results for a 6-8 week time period when I begin. Dr. Kipps and I discussed the trial and the Phase I results and how well I might respond to it. He was very positive about the results so far and did think I would be a good candidate. I like it because it will not close the doors on other treatment options if this one doesn't work for me.

So needless to say I am not too upbeat right now. Although I know the immediate AIHA problem can be resolved (as it has been in the past) it was certainly not where I expected this to be going. It just reaffirms that CLL does not have a 'standard' course of escalation or a standard course of treatment.

Terry

 

06/23/09 – Not a Bad Visit!

Today I had my monthly visit with Dr. Kipps and I have to say it went well. My White Blood Count (WBC) only went up about 5,000 to 73,000, which is the smallest increase I have had since January of this year. Also, my spleen and lymph nodes are staying about the same size. All of this points to a stable plateau which is good because it means we don't have to rush into any treatment immediately. We also discussed the clinical trial that I think I am going to enter sometime in August. End of Short Report.

If we had followed the same trend that we saw in the last couple of months I am afraid I would have been unable to participate in the clinical trial that I wanted to be in. I think Dr. Kipps was also concerned about what my numbers and exam were going to show because it would have put us in a situation where I would have had to start treatment in the next month. At my last visit Dr. Kipps gave me two papers on the clinical trials that were going to be open in the next couple of months. After reading them over (if you can call it that) and having several conversations with the Clinical Trials coordinator at UCSD I had pretty much made up my mind as to which one I wanted to participate in. At my visit today I discussed the two trials with Dr. Kipps and I think he agrees with my choice. They are seeing some positive results from Phase I of this trial, and I will be entering Phase II. They hope it will start sometime in August, which is great for me timing wise. One of the most important factors for me is that I didn't want to limit my options for future treatments. With some of the harsher treatments, there is a risk that you may become refractory to that or other treatments, which then limits your options.

The detail below outlines what the ABT-263 trial is supposed to test.

Bcl-2 Family Protein Antagonists (ABT-263)

Apoptosis, also known as programmed cell death, is a natural process by which damaged or unwanted cells, including those that are or could become cancerous, die and are cleared from the body. The Bcl-2 family proteins, which are expressed at high levels in many tumors, play a central role in regulating apoptosis and, consequently, in tumor formation, tumor growth and resistance to treatment. Researchers have been interested in the pro-survival members of the Bcl-2 family since their role in preventing apoptosis was established more than a decade ago. Pioneering structural biology work at Abbott showed how Bcl-2-like proteins interact with one another, thereby setting the stage for Abbott researchers to develop novel compounds that cause cancer cells to self-destruct.

ABT-263 restores programmed cell death by blocking the function of pro-survival Bcl-2 family proteins. Pre-clinical data have shown that Abbott's Bcl-2 family protein antagonists effectively kill certain cancer cell types. Additionally, Abbott Bcl-2 family antagonists were found to enhance the effects of chemotherapy and radiation in other types of cancer, such as non-small cell lung cancer. ABT-263 recently entered Phase I clinical trials for lymphomas, chronic lymphocytic leukemia (CLL) and solid tumors, including small cell lung cancer.

 

There are some risks associated with this treatment, but they are far less than the risks of a standard chemotherapy based protocol. I did ask him what were some of my other options if this didn't work, and he said not to worry he had a lot of options that he could use with me.

Today I also had my monthly IVIG, and so the day was pretty long, 11 ½ hours from door to door.

On another note, I had my second cataract surgery performed (one in May, one in June) and I am able to see with little correction. It turned out great. Also, Donna had surgery on a torn meniscus, and is now mending quite nicely. Never a dull moment for medical issues at the Evans house.

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