10/31/10 – “It’s a Hard Knock Life”

Some of you may know or remember the words from the musical ANNIE. Even though I'm not an orphan in NYC in the 30's, sometimes I can relate to the words in the song It's a Hard Knock Life. I went down to La Jolla last Monday for my 6 month CT Scan. This was to determine the status of my remaining nodes located in my abdomen. If they were gone, or had not shrunk since the last CT I would stop treatment. If the nodes had shrunk and all my other numbers looked good, I would continue the treatment. On Tuesday morning I saw the doctor and the word was that the nodes had shrunk about 25%, all my blood numbers were good, so I continued on with Round 7. Because there is no scheduled CT scan, I will also do Round 8 in November.

I guess this is good news bad news. The bad news is that I have to continue with the treatments, the good news is that I am still responding to the treatment and having no major side effects or issues. Of course I had hoped to be done, but I would rather receive the full benefit from the treatment than stop early. This round was a little longer than usual because I had a CT on Monday, 10 hour treatment on Tuesday, 2 hours treatment on Wednesday, and then I had to stick around on Thursday because I had an EKG and Echocardiogram on Thursday afternoon. I think it was the longest time that we had spent down for the Trial. We did get to get out and see a couple of movies and go to a couple of nice dinners (tried Roppongi, Kevin), so it made the time go by a little quicker.

There is no clear decision on how long this treatment will last. In the beginning I thought I could have no more than 8 rounds, but in re-reading the information packet I see where it can continue until the doctor decides I should stop. I will have to talk to Dr. Kipps in November and try to figure out what he thinks my path will be. I have given up on picking a stopping date, as I have been wrong (and a bit disappointed) in the past. I feel pretty good after this round of treatment, so that is a plus. We are off to Seattle on Friday to visit family, so I am taking advantage of how I feel to take a small trip.

On November 13^th it will mark 3 years since I saw Dr. Kipps for the first time (he welcomed me by putting me in the hospital). In the past 3 years I have certainly been on a roller coaster of medical ups and downs and a variety of treatments. I know that I am going in the right direction and in the words of that famous philosopher Annie,

The sun'll come out
Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always
A day
A way!

 

Tomorrow,

Terry

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