12/21/10 - Put on ‘Injured Reserve’

For those of you that aren't familiar with the term Injured Reserve, let me try to explain it and how it relates to me. In professional sports when a player that is on the roster gets hurt, the money grabbing owners put the player on Injured Reserve. This means that he is still a valuable commodity, but he doesn't take up a valuable roster spot until he can become 'active' again. My last blog said that I started a new trial that changed me to a single agent, every day dose trial. This actually lasted 7 days. On the 8^th day they took my blood and my liver enzymes had gone through the roof. They decided to give me a break for a week and see if they come back down, hence, I was put on 'injured reserve'. I had another blood test yesterday and they have come back down, but not quite enough to continue the trial at this time. Dr. Kipps believes that another week off will bring the liver enzymes back to a normal range and we may be able to begin again next week. End of short report.

I feel really good and all of my other numbers look good so I guess I get a drug free holiday. The liver enzyme rise is a known side effect with the Navitoclax (ABT—263) drug. No one is really sure how a person will respond, so when they start me again it may be at the same dose or at a lower dose. I think the sponsor (read drug company) wants to keep me in the trial and certainly Dr. Kipps will have a lot to say about what goes on. One encouraging thing about this break (and the previous one) is that my blood numbers have stayed stable since my last real treatment which was in October. So for almost 2 months without any drugs I have almost been in the normal range. As I have mentioned several times before, it is difficult to live this week to week. There is no certainty to how things are going. You feel great, play golf 3 times in one week, and then they tell you your blood numbers are out of whack. What I would give for some normalcy, some ability to plan longer term.

This last week has not been a particularly good one for my CLL friends. Two people that belonged to the Orange County CLL support group have passed away. Both Bernie and Robert fought courageous battles. They were on two different paths in fighting this dragon, Robert dealing with the after effects of a bone marrow transplant, and Bernie trying to get to a place where he could have a transplant. This makes you take stock of your own situation and how fragile life can be. My prayers are certainly with their families during this difficult time.

Let me take this time to wish all of you a Merry Christmas. I hope you will cherish the times with your loved ones, because every moment is precious.

Terry

 

12/8/10 – Starting all over again

Apparently I am such a good test subject, they want to start me on a different trial. I am not sure I have a lot of answers at this point (and they don't either), but nevertheless I started the new trial today. The only thing I am sure of is that it will be a single agent trial (one drug). The drug will be the test drug from the last trial I was on (ABT-263 or by its new name Navitoclax. So instead of taking 3 drugs I will take one, instead of taking it 3 times a month I will take it every day, instead of taking 110mg, I will take 250 (after the initial week at 100). There is no stated end to this trial. I guess it could go on forever, but that is one of the things they are testing. End of short report.

If you read my last blog, I overcame a scare of dramatically dropping hemoglobin. No one is sure why that happened, but it all came back to normal in a couple of days. The outcome of it all was that we stopped the three drug trial that I was on, and will try another approach. It will require a lot of contact with UCSD in the beginning (weekly trips), and a lot of blood tests (5 per week locally). At any time during the trial my platelets drop below a certain number they will stop the trial. The drop in platelets is the most common side effect of this drug. There is still an issue with liver enzymes rising, but I have yet to get a 'formal' answer on that yet. This was an issue on the last trial because they didn't allow me a glass of wine or a beer. We will see how this one develops.

An interesting note is that I am apparently the only one in the U.S. that has come from the 3 drug trial and has gone to a single agent trial. I guess that is good and bad. The good is that they are going to watch me very closely, the bad is that they 'have' to watch me closely. They really don't know how someone will respond to this drug after they have been treated with the 3 drug combo. So once again I am on the bleeding edge (no pun intended) of the search for a drug that will be effective. They really don't know how long I will be on this trial. I know a woman who has been on this drug as a single agent for a year (Yea, Lori), and she is responding well. One good thing that this drug is not a typical 'chemo' drug, so the overall side effects are less. If you really want to read about this drug, go to the side bar on the ABT-263 topic and you can get all the info you want.

During the last trial I did have some side effects, mostly GI issues. I guess I will see if it was caused by one of the other drugs or by ABT.

Terry

11/30/10 - Looks like things are turning around

Yesterday I got the results of my Wednesday blood test. I am back to normal. Go figure. I had another blood test yesterday and will get the results today but it looks like I am am OK. (I know some of you may dispute this). No one can explain the blip from last week but I have had ups and downs during this trial and this was just another one we think. The test I had yesterday will confirm this.

What now? They think I am done with this trial. The plan is to move me to what they call a single agent trial just using the ABT-263 on a daily basis. There have been a number of people on the drug alone and they are doing quite well. For me, the thinking is that since I had the Rituxan and Bendamustine the single agent will be even more effective. We are still discussing when it will start but it could be as soon as this Thursday. More details when I get them.

Even though the question of what was was happening was hanging over my head over Thanksgiving, we had a great time with all of our kids, Donna's parents, her brother, sister, nieces and nephews in Palm Desert. We are still down in the desert and having fun with our friends Bob & Dianne from Oregon.

Thanks for all the prayers they seemed to have worked.
Terry

11/23/10 – Not easy to explain

Well, today I was supposed to have my 8^th round of treatment and as of right now, I am home. Things didn't go as planned. Even though my external exam was excellent, my white count is good and my blood ratios are good, my red count has dropped to a level where Dr. Kipps doesn't feel comfortable that we should continue the trial at this time. We will continue to monitor my blood levels on an almost daily basis to make sure the autoimmune hemolytic anemia (AIHA) has not returned. No one is sure what is going on, but he didn't want to do any treatment that might make my situation worse. End of Short Report.

This was completely unexpected. Last week my red count was 14.5; today it was 12.0. That kind of drop in 6 days is something that has to be monitored closely. My platelets have also dropped to an all time low, not to a dangerous level, but just another mystery. The last thing they want is to have me get into a situation like I was in 2007; so I will get my blood checked tomorrow, Friday and Monday. If it drops below a certain level I will have to start taking steroids, and have a type and cross match for a transfusion. I can have the blood tests done locally, and in Palm Desert, where we will be spending Thanksgiving with a large portion of the family (All 4 kids will be there). Unfortunately, if it drops too low, I will have to go to La Jolla to have the type and cross match, so that they can do the transfusion down there. Of course, the Thanksgiving holiday puts a whole new dimension on the situation. I just hope I don't need a transfusion on Thanksgiving.

The trial coordinator checked to make sure that I am not dropped from the trial because of this. They said it was OK to take a break for a while. They are going to do a blood test this week that will tell if there are any leukemic cells in the blood. This is called a Flow Cytometry. If that shows nothing, then they will do a bone marrow biopsy to dig deeper (pardon the pun), to see if they can find any cells there. If they can't find any cells they will stop the trial (good news). If there are cells, then we will probably continue once this current mess gets cleared up.

There are a lot of variables here, and the next week or so will probably tell us what is going on. Please keep me in your prayers during the upcoming week.

Happy Thanksgiving!

Terry

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