10/1/10 – Round 6 Over

This week I finished my 6^th round of treatment. As has been the case for the last couple of treatments it was pretty uneventful. We knew going in that I would do Round 6 unless some of my blood numbers had gone whacko in the last month (which they did not). There was an interesting change in the protocol which made the treatment even easier. In the past, I had to be there on the 3^rd day of the treatment to just have a blood test and take the oral trial drug (which means we had to spend an extra night down there for a blood test). They have now changed the protocol and now I can go home after the 2^nd day of treatment and just take the oral drug at home on the 3^rd day. So this makes it a shorter stay and even easier.

This month is going to be one of anxious waiting. On Oct 25^th I go down for a CT scan to determine if my internal lymph nodes (the only issue left) have shrunk to an acceptable size. On Tuesday the 26^th I see the Dr., get the results of my CT scan and determine whether or not I get Round 7. I know I have said this before (and regretted it), but it doesn't look like I will have Round 7. When I met with Dr. Kipps this week he indicated that with all of my other positive results (blood work and external nodes shrinking), he thinks that the CT scan will also show the results that we want. So I expect we will go down there on Monday, get the CT scan, go to the Dr. appointment on Tuesday morning and then go home.

I probably feel better after this round of treatment than any of the other rounds. I am having very few side effects so I am either getting used to it, or there is nothing left to treat so it is just running through me.

A question that I have been asked 'is what is next'? The real purpose of this trial is to determine how long of a remission can I get from this particular protocol. Even though all of my blood numbers look good, and my nodes may have melted away, the real test is a bone marrow biopsy which can't be performed until 2 months after my last treatment. So if this is my last round then I will have a bone marrow biopsy in November or December. That will tell the depth of the remission. No one in the trial (there are now 12 of us in the U.S.) has had this yet, so we don't know what to expect. So even though I may be done with the Trial, I am still in waiting mode (as usual).

Today is my sister's birthday, so I want to say Happy Birthday to her!. And since I won't probably write another update by Sunday, Happy Birthday to my Dad too!

Terry

09/03/10 – You’re doing so well that….

It is funny that you hear what you would like to hear. In my last post I alluded to the fact that I might be done with treatment after this (the 5^th) round. Unfortunately, that is not going to be the case. So I am now set for round 6. End of short report.

At my doctor visit in August (right before the 4^th round) he said I was going in the right direction. Blood counts looked good. Spleen, liver and lymph nodes non-palpable. He even indicated that I may only need one more round of treatment (the 5^th round). But what the good doctor did not have at the time were the results of my CT scan, which was looking for INTERNAL lymph nodes, those that cannot be felt by human hands. Even though the scan showed a decrease in the internal lymph node size from the scan 3 months ago, they were still present. What this means is that we are ALMOST there. At my doctor visit this Tuesday, everything once again looked great. Blood numbers looked good, and he told me it was my best physical exam to date. So that is a positive note.

Since there is no CT scan scheduled until before the 7^th round, I am sure to get 6 rounds, and maybe even 7 or 8 depending on what the scans show. When I asked why the woman ahead of me in the trial got to stop at 5 rounds, they said, "she had no internal nodes". So this leads me to believe that I am just a different case. Dr. Kipps is still VERY positive about my results and told us that as long as I am not having any major side effects, my counts are not bottoming out, and I am still making progress (the shrinking of the internal nodes), that there is no reason to stop the treatment. He doesn't believe in 'over-treating', but he said that if we under-treat, we may be doing this all over again sometime in the near future. He does think that this particular combination treatment is going to show excellent results for both my CLL as well as my AIHA (anemia).

So off we go to La Jolla once again on September 27^th for another 3 days of fun and merriment. After this round of treatment I am feeling pretty good. A little tired, but that is usually the case. I am hoping that I will have minimal post treatment side effects like I did last month.

On a family note, our middle son Matt got engaged this month, proposing on vacation in Amsterdam to his long time girlfriend Randi. We are so happy for both of them.

Terry

08/04/10 - Beginning of Round 4

We came down on Monday afternoon so I could get a CT Scan to do a comparison against the scan done in February, before I started the treament, and 6 months out. This was OK because I had to be at Moore's on Tuesday morning at 7:30 for a blood test before my 8:00 am appointment with Dr. Kipps for an evaluation. All of my blood numbers are going in the right direction and even my hemoglobin continues to rise. The other measuring stick is the actual physical exam by Dr. Kipps. Let's just say that after the physical exam, he was actually beaming. The two main things he looks at are the nodes and the spleen. For the first time since 2007, he could not feel my spleen, and my nodes are almost all non-existent. And it was not as if he didn't try. OUCH! He always is very thorough in his exam, but this time he was EXTRA thorough and he still couldn't find anything. He said there had been a slight change for the better since last month's exam, he felt I should go one more round. I had always expected this, so it was no surprise. But he did say that if I remained at this state next month he would have to re-evaluate whether to go one more round or not. Now, this was a surprise.

The original trial was to go 6-8 monthly cycles, but another person on the trial had only 5 cycles before they stopped because she was doing so well. I was kind of hoping that this would be my case as well, but now it looks like there is a possibility I might stop at 4. It all depends on how my numbers look and how my physical exam goes. He told me that he doesn't want to over treat me, but he also doesn't want to stop before I receive the full benefit of the treatment. So right now I think the max I would do is 5 rounds (Which would be the September treatment), but I may stop after this one.

Day 2 of this round is only about 1 1/2 hours and after the 8 hours yesterday it will be a snap. Even got to go to Harry's in La Jolla this morning for breakfast. On Thursday I just get a blood test and take my oral drug, then home, so it will be a VERY short day. Last month I felt poorly for about 5 days after the treatment, but I am hoping to shorten that even more after this round.

Trying to remain the poster boy!
Terry

07/10/10 – End of Round 3

Well, I have completed Round 3 and seem to be doing pretty well so far. I am not having the same side effects that I had last round, so maybe I am adjusting to the drugs, or maybe my body just doesn't care. Most of my blood numbers look good with the exception of one, my hemoglobin. I will explain that in more detail in the next paragraphs. I now get weekly blood tests up here and don't have to drive down to La Jolla every week, so that is a good thing. Round 4 is scheduled for August 3^rd. End of short report.

Since last month, my hemoglobin has dropped over 6 points, from 14 to 8, which is not a good thing. The fear was that my autoimmune hemolytic anemia was back, but the tests to confirm that have all been negative, so we really don't know what is going on. The most likely cause would be because of the drugs, either the ABT or the Bendamustine, but that is just a guess. My blood test on Wednesday (the 7^th) had my Hgb at 9.7, and on Thursday it was 8.7, this then triggered all the red flags. If it drops below 9 I have to be transfused. If it drops below 9 and it can't be raised by transfusions, I am off the trial. So on Thursday they requested a type and crossmatch for 2 units of red blood. This was done about 9:30, and I had resigned myself to the fact that it would take 24 hours to find compatible blood. My problem (besides not being able to break 80) is that I have antibodies in my blood that are difficult to match, that is why it takes a long time to find some blood I can use. Since I was already at the infusion center I told them to give me my Pentamadine, which is to protect me from pneumonia. This is about an hour process and I was done about 11:30. So I packed up all my stuff, and started walking down the hall and I heard someone calling my name. I thought I had forgotten something, but they told me that 'THEY HAVE THE BLOOD'. The nurses and I both thought it was a mistake. First they said they had the plasma, which is not what I needed. Then they said, no, it is blood. Then my nurse said to them, 'are you sure, he has a lot of antibodies and it is tough match' then they said, he has minimal antibodies, and it was an easy match. So I went back in the chair and for the next 4 hours received 2 units of blood. The next day, Friday, was the first test to see if the blood had helped me. It had, I went from 8.7 to 11.1, so now I was back on schedule. I got my Trial drug, and an infusion of Bendamustine and we were out of there by 12:30. I actually felt pretty good, and we went out to lunch and stopped by a nursery in Solana Beach, and stopped by Costco on the way home.

Before I left La Jolla they gave me the last dose of the trial drug to take on Saturday morning. So this morning, I had a hearty breakfast (you can't take it on an empty stomach) and took my medicine. I felt pretty good for about an hour, then the queasiness set in, so I popped a Zofran for the nausea. I felt OK for about 8 hours, then the Zofran wore off and I popped another one. I am not sure how long this cycle will last this time, but I hope it is shorter than last time (7 days).

I can deal with the side effects this time because I know they will eventually go away, but my main issue is why my hemoglobin is going down, when will that stop and/or how long this last transfusion will last. Thru a variety of tests they don't think my AIHA (autoimmune hemolytic anemia) is back, but they aren't sure why that is going down, when all my other numbers are looking so great. If it wasn't for that one issue I would once again be a 'poster boy'. I have another blood test next week, so we shall see how I am doing at that time, and what the next step will be. According to the good Dr. Kipps, I can continue on the trial if all I need (easy for him to say) is a transfusion every couple of weeks. So as long as we can keep the Hgb level above 9 I am good to go.

On a positive note, we had a great 4^th in Seattle with all of my family who lives up there, and we added Jeff & Kristen, Donna's parents, her brother Bill, sister Nancy and her two kids, Jenny and Jeremy. A great time was had by all. Thanks Rebecca and Cherese for a great B&B.

06/16/10 – Second Round Stats

I will be glad when the month of the second round is over. The second round was given over 3 days instead of 5 in the first round, so multiple drugs were given every day. On the third day, I was already feeling pretty wiped out, but zofran and steroids (premeds for the day) soon made me feel quite well again. I felt pretty good until that evening, when I started getting flu like symptoms (dull headaches, sweats, GI issues). After the first round, this lasted about 2 days. This time it has lasted 7 (it was so bad I missed golf, so some of you know how I must have felt). I am not sure why, but there are a number of theories all unproven and unscientific. First was the shortened period of time the drugs were given. Secondly, my body had been beaten down last month and it had not fully recovered. Third, I didn't drink enough to flush out the drugs. Fourth and most definitive. NO ONE KNOWS WHY. Needless to say I was kind of discouraged. I thought I would recover quicker or at least in the same time period. That had been the case in my previous treatments (but this one is different). Then the mental piece of this whole thing started – 'is the treatment working?' 'Am I developing other complications?', etc.

So when I went down to La Jolla on Tuesday I was not a happy camper. Because it was just a blood test and quick check I was hoping to get out early and get back to Long Beach by noon for my Credit Union Board Meeting. The best laid plans….They ran the wrong blood tests (which take about an hour to get the results back), so instead of being in Long Beach at noon, I was still in La Jolla at noon. BUT, it was all for a reason. ALL of the blood tests are going in the right direction, even ones that had been so-so before. I also ran into Dr. Kipps on my way out who knew all about my issues after the second round and reassured me on how well I was doing, and said that all the other people in the study are also doing extremely well. So after those words of encouragement and the positive test results, I am feeling a little better mentally. Once again I expressed all my concerns about not being able to take any OTC drugs to help me out and they once again pointed to the 'study' and how it might skew the results. I understand their logic, but boy, when you know there is something simple (an aspirin) that can help you feel better, it is frustrating.

The good news is that I am free for the next 3 weeks and will finish off my month in Seattle for a family 4^th of July get together. I am sure that I will be fine by then and looking forward to getting away from here. As to what will happen in next month's round? WHO KNOWS? I am just hoping it is the same as this month (hopefully shorter) and it doesn't extend out even longer.

Still appreciating all the prayers and well wishes.

Terry

06/06/10 – Off to 2nd Round

On Monday night we will drive down to La Jolla to get ready for an early morning appointment at UCSD on Tuesday. We decided that we didn't want o get up at 5am to drive down there on Tuesday so this means I will be well rested and ready for round 2. So far my tests have shown mostly positive results. My White count has gone from 53,000 to 5,000 (normal is 4-10,000). My hemoglobin has remained fairly stable in the 14's, which means the Anemia seems to be under control. If you remember, the two main concerns of this treatment are a drop in platelets and a rise in the liver enzymes. My platelets have kind of bounced around, starting at 250, then going down to 120, and then up to 200, now they are at 150. This isn't a cause for great concern yet and won't be until they get down fewer than 50. My liver enzymes (2 tests) have been normal until the test this week where one of them was slightly over the high normal range. Still not a major concern. It will be interesting to see where they go after round 2.

Round 2 consists of 3 days of treatment with 2 blood tests every 2 hours on the first two days, which are the longest days. The last day is fairly short and we should get home pretty early. The first round was 5 days and this one will be only 3, so it will be quicker. I do have to go back down every Tuesday for a check-up and blood tests until round 3, when I can do blood tests locally.

We did have some excitement this month as our son Jeff graduated from Long Beach State with an MBA. It was especially nice because my Dad and his wife Lois flew down for the ceremony. Life goes on.

Terry

05/15/10- Released for Good Behavior

After 5 days in La Jolla being poked, prodded and receiving treatments, we are finally back home. On day 3 I received the second drug in the trial called Bendamustine (Treanda) and the trial drug, called ABT-263 which is oral. There had been a lot of talk about this drug tasting horrible, but it is less than a teaspoon, they give it to you in a syringe that you squirt down your throat and then chase it with juice, or iced tea. It actually wasn't that bad, tasted something like burned peanut oil. Now how in the world would I know that? Ever seen me cook? They have to do blood tests every hour to check how your body is reacting to the drug, and they do this for 8 hours. The side effects were very mild, didn't sleep at night (but I think it was because of the steroids they gave me with the Bendamustine), little upset stomach the next day, but overall nothing I couldn't deal with. One of the major side effects of the trial drug is that it drops your platelets and raises your liver enzymes. It was quite a shock on Friday when I got the report. Platelets went from 222,000 on Thursday to 144,000 on Friday (normal range is 150-300). Even though it is a huge drop, it is not anything that could take me out of the trial. They have to go below about 25,000 to do that. I felt well enough to go out to dinner (Osteria Romantica in La Jolla, thanks Kevin) with Bruce and Connie who happened to be in the area yesterday.

This morning I had my blood draw after we checked out from the hotel, started driving home and got the call that my platelets had dropped down to 121,000, but that was still OK. So, I took the 3^rd and last dose on the way home. The original plan was for me to have a blood test on Sunday and Monday in La Jolla, but I convinced them that I could get them a reliable sample up here (am going to LB Memorial), and that way I don't have to drive down there for a 5 minute blood draw. Since I had my last dose, there is really nothing to be done now except to wait until my next round in June. If my platelets are at a worrisome level, then they will postpone, or stop, but I don't see that happening.

So the new plan is now to get my blood drawn up here Sunday and Monday, go back to La Jolla on Tuesday for my monthly IVIG, another blood test, a physical exam, an EKG and an echocardiogram. Then I have to get blood tests every Tuesday until June 8^th, when I begin the second round.

SHINGLES. I want to put in a little info on my bout with shingles. First off, I am not a medical professional and no one should do anything without talking to their health care professional. I had a diagnosed case of shingles (without the red rash and blistering, which is not common, but does occur). The pain is difficult to describe. It is kind of a burning / stabbing pain. In my case it went in about a 5 " band from my belly button on my right side to my spine. Shingles usually happens on just one side at a time. I think because I was on anti-virals already, it may be kept me from getting the rash. But what I was left with I would not wish on anyone. I have been in almost constant discomfort for 3 weeks. Nothing even touched it except Tylenol w/ codeine and that wasn't very much. Now that I am on the trial I can't take aspirin, Tylenol, any Nsaids (like Motrin), so I am left to just grin and bear it. Today is the first day that I have periods when I don't feel it. There is possible help for 'normal' people (those without compromised immune systems). There is a 'shingles vaccine' that you can get from your doctor. If you have a chance to get it, then by all means, do it. I couldn't have had it because it is a 'live' virus and I can't have any of those, but most other people can. So ask your doctor and take the vaccine. End of my non-medical advice.

I actually feel pretty good, a little tired, some mild GI issues, but I still have an appetite. Now with another 20 days to recover, I would expect that I will be just fine for the next round. The success of this treatment will depend on how my White count responds (downward), keeping my hemoglobin up, and keeping my platelets and liver enzymes at good levels. In order to get a decent response I will have to have at least 5 more rounds of treatment and maybe up to 7. So we take it one day at a time.

Terry