01/29/11 - Take a Vacation Kid!

This week I saw Dr. Kipps to figure out what to do with me. My liver enzymes have been climbing steadily since I started taking the trial drug on a daily basis, and they actually told me to stop taking the drug last Friday. So when I went to see the doctor this week it was no real surprise when he told me that he thought I should stop the trial. He told me to ‘take a vacation’ from all of this and let’s let everything settle down and see where I land. End of short report.

The strange thing is that all my other blood numbers are in great shape. My nodes are all normal and my spleen is normal. His comment was that I had an EXCELLENT physical exam. But his concern was that my liver enzymes showed no sign of leveling off or going down. He felt that the risk was not worth the benefit. He did not want me to have permanent liver damage. So what now? For now I will stop all treatments except for my monthly immunoglobulin treatment. It doesn’t seem like the last 9 months of my life (or body) have been dedicated to medical science, but I guess time flies when you are having fun. Since there is no track record for anyone that has followed my treatment regimen, there is no way to know how long this may last. Of course, the hope is that it will last a long time, but you are always looking over your shoulder to see who is creeping up on you. I will go back in a month to have the trial ‘follow-up’ checkup, and then go back in 2 months for a bone marrow biopsy which is the real measure of how deep a remission I am getting. At my appointment we talked about new trials that are coming up and possibly one of those may be in my future. He does think that it may be a while before that happens.

I was a little late in getting this out because we have been getting ready to celebrate my Dad’s wife Lois’ 80th birthday bash, which is happening as we speak at our house. It is going to be a great gathering of all sides of the family. Happy Birthday Lois, and many more.

I continue to feel good other than minor aches and pains that may or may not be related to the CLL and/or the treatment. But, as they say, it is better than the alternative. So I am going to enjoy this break in treatment and try to improve my golf game (which may be impossible), and do a little bit of traveling.

Terry

01/04/11 – Put me in Coach, I’m Ready to Play, Today

As John Fogerty, that Rock N Roll philosopher, so eloquently said in "Centerfield", I'm ready to play once again. Yesterday was my appointment with Dr. Kipps to figure out what we should do next. One of my liver enzymes is still a little elevated, but nothing to cause alarm. So the big question was 'what do we do now'? Well, I am now back on the single agent trial and so we will see how it works this time. End of short report.

All of my blood numbers are looking good except the one liver enzyme. I am feeling well and my physical exam yesterday was excellent. But you have to understand that in my particular situation of being on a unique clinical trial, there are no right or wrong answers. You know you are in uncharted waters when you and the doctor are going back and forth on options and pros and cons. I think I could have swung the vote either way, but in the end it boiled down to trying to get the most out of this drug that I can. Since I am having minimal side effects and the results are pretty amazing, we decided to try the single agent trial at a slightly lower dose. We will once again do blood tests almost every day for this week. If the platelets drop or the liver enzymes rise to an unacceptable level, then we may stop it all together. The other issue is that my wine club friends will have to continue to taste without me, and I will be unable to test my son Jeff's first batch of 'home brew' beer of the season.

My appointment yesterday seemed long, maybe the longest since my first visit with Dr. Kipps. We spent a lot of time talking about all of the new and exciting drugs that are on the horizon. We also spent a lot of time talking about what we should do with me. On one hand, I am stable right now, even with not having any drugs for almost 8 weeks and what benefit am I going to get by continuing? What if we can squeeze a longer and more complete remission out of more rounds? The bottom line is that no one knows; no one has ever followed my path. (See Bob, there is a reason you call me Pathfinder). In many ways I feel fortunate that I can contribute to this process.

I feel like I need to talk about the Bone Marrow Registry program. In many cases the last hope for a blood cancer patient is a Bone Marrow Transplant. People sign up to be donors thru a simple cheek swab process, and then they get put on a National Registry. If the time comes that someone is a match to you, you will be asked to donate bone marrow cells. It is truly a life saving process. The problem is that the National Registry does not have a lot of people on the list, so many people do not have a perfect match and have to settle for something less than perfect, which of course means that there is less of a chance that the transplant will take. For those who can't find a donor within their family, the chances of finding a perfect match become grim. Only 30 percent will receive a transplant from the Be the Match Registry, operated by the National Marrow Donor Program. There are currently only 8 million people in the United States registry. That is less than 3% of the US population. The National Marrow Donor Program covers all hospital and medical expenses for donors if they are called upon to help. It is not a very invasive procedure which is performed as an outpatient procedure and you usually go home the same day. If you would like more information on how you can participate go to
http://www.marrow.org/

 

 

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