08/17/09 – Finally Beginning

After my bone marrow biopsy on Friday 8/7 I thought I would be starting my treatment of Rituxan + HDMP treatment for AIHA plus a rising WBC the next week. I finally talked to my case manager on Wednesday and she said they got insurance company approval and they were still trying to 'work me in', but it was tough getting me in on such a short notice (especially for 4 days in a row of 4-8 hours/ day). So, not hearing anything I called back on Friday and found out I had MISSED my Thursday appointment. Apparently they had made the appointments (thru Sunday) and no one called me.

Lessons learned here:

Call back multiple times / day EVERY day
Talk to a LIVE person
Call BOTH the Case Manager AND the Infusion Center

So of course they had to RESCHEDULE me. I am now starting on Tuesday thru Friday. My first R + HDMP treatment was 5 days, but they have cut it down now to 4 days the first treatment and 3 days for the second and third months depending on when I am at. We will drive down and back tomorrow, and then spend the night on Wednesday because I have a 7:30 infusion on Thursday.

My WBC has now gone to 177,000 from 122,000 a week ago so it is on a fast climb upward, but my Hg is holding steady at 12.3, which is the bigger concern right now. So let's hope that all the drugs they pump into me will get back on the right track.

Terry

08/07/09 – And Away We Go!

After my last post I indicated I was going down to La Jolla for a bone marrow biopsy and another blood test to confirm my status. Well, it didn't happen on Wednesday, it happened today, Friday. For those of you who have never had a bone marrow biopsy, it is an interesting experience. In simple terms it is like someone putting a corkscrew in your hip and then taking a horse syringe and drawing out bone marrow. Gross enough for everyone? On the blood test side, my hemoglobin has gone up to 12.3 from 11.7, my WBC has remained the same. So what this means is that we will NOT start Prednisone to carry me over until treatment begins. Speaking of treatment, it looks like as soon as all the administrative insurance issues are resolved, I will begin treatment next week. We decided to once again try the Rituxan + HDMP since I had a 14 month response to that treatment. If you forget what that is all about, there is a link on the right hand side of the web page that explains it in more detail. It will be 3 or 4 weekly cycles given 4 weeks apart. We also decided to follow that treatment up with another drug to try to get an even longer remission. All of that will be decided at the end of the R + HDMP treatment. End of short report.

Actually I feel better than I did earlier in the week mainly because I won't be on prednisone, I now have a plan, and I even have a post plan. The bone marrow biopsy is not a big deal for me. I know some people who have one and swear they will never have another. I have had 3 and they have all been pretty uneventful. This time was slightly different because Dr. Kipps himself had to do the biopsy because his PA was on vacation. She had done my last two with no problems. I kidded him that I hoped he remembered how to do one, but it came off without a hitch. Even though Donna is a nurse, they requested that she remain outside during the procedure because the in the last 4 procedures the relative watching had passed out. Dr. Kipps decided he wanted to discuss things with me in the room, so he brought her in where she stayed. She was fine but did say it is easier being the patient and not being able to see the procedure than having to watch. I won't get the results of the biopsy for a couple of weeks, and it will be used to check for any genetic changes and to use as a baseline before treatment.

I was happy that my hemoglobin counts came back on a slight upward swing. If they had not, he would have started me on prednisone to keep my counts in check until the treatment started. Dr. Kipps is reluctant to use prednisone unless he absolutely has to. The long term negative effects are just too great. (I know this first hand because of my steroid induced cataracts). However, because The Coombs test was positive, we know that my AIHA is back and we have to treat it. Because I had such a positive response to the Rituxan + HDMP before, we decided that this was the best option for me this time as well. After this course of treatment (which will be over 3 or 4 months), we will decide if we want to add on another treatment protocol to try to get a longer remission. We talked about several options, but nothing has been decided yet as to which one. If you remember the last time I was treated in June – August of last year, the treatment is 5 days in a row, so we have to decide if you are going to stay down there or make the drive every day. The treatment itself has not been a big deal for me, although it can take 6-8 hours a day depending on what drugs they are giving me that day. I do lose my taste buds after day 2, and I feel kind of lethargic for 2-3 days after the last day of treatment. Other than that, it is not a problem for me. I am not sure which day of the week I will start, and they will call me on Monday to let me know. I will probably begin treatment on Wednesday because of insurance authorization issues, which means the first round, will end on Sunday.

Because of the bone marrow biopsy I was on limited duty for 24 hours, so Jeff had to work on installing the patio pavers mostly by himself. Unfortunately I will be cleared for duty tomorrow, so I will get to help out. I hope we get it done this weekend, because I will be out of commission next weekend. I know that with my family, friends and faith, I will get through this and be on the upswing once again.

Terry

 

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