7/11/2011 - More Time Off

I know that I haven’t posted in while, but my medical life has been quite uneventful for the last 3 months.  Yesterday I had my 6 month post treatment follow-up visit with Dr. Kipps.  The good news is that all my blood numbers remain stable and my physical exam was excellent.  Once again he said see you in three months.   End of short report.

Over the last several months several close friends have been going thru their own battles with cancer.  I pray that their outcomes are going to be as good as mine has been.  The mental stress of all of this can be overwhelming to both the patients and to the caregivers.  Keep up the good fight.

After not having a real vacation in over 3 years, we got to go to Hawaii in May where we were able to see our oldest daughter Aimee get married.  In September we will be going to Seattle to see our son Matt, get married.  It has been great to feel well enough to start planning and enjoying some of the things that retirement (and grown children) has to offer.

Terry

04/05/11- See you in 3 Months!

…these are some of the sweetest words a cancer patient can hear after treatment. On Tuesday I had my follow-up appointment with Dr. Kipps to go over the results of my bone marrow biopsy. Even though the blood can be free of leukemic cells, a bone marrow biopsy is the only way to determine whether or not they are still lurking around in the bone marrow. Apparently most all of mine have decided to take a leave of absence. The results were so good that Dr. Kipps said he saw no reason that I needed to be seen for 3 months. End of short report.

There are different measures of how well a treatment has worked. There is a Partial Response, which means that your blood numbers are better, your lymph nodes and spleen have decreased in size, and some of the things like night sweats and/or fatigue have decreased or disappeared. The bottom line is that you are getting PARTIAL relief from the disease. From my first two treatments I got a partial response, but it was NOT complete. This time it looks like I got a Complete Response. In the 4 months since my treatment ended my blood numbers are almost all in the normal range, my lymph nodes have all disappeared and my spleen is normal. All of these point to a Complete Response.

However, the real measurement is a bone marrow biopsy. In the past I have had up to 80% leukemic cells in my bone marrow. Before I started treatment last year my bone marrow was at 30% leukemic cells. My results from the latest bone marrow biopsy show a .9% involvement. Dr. Kipps said that in 99% of the labs they would not even be able to detect this; but because the test equipment at UCSD is so advanced they are able to detect the smallest levels of involvement. This is almost NO leukemic cells at all, and is a GREAT response.

When the doctor says he wants to see you in 3 months; that means you are doing well. He thinks it will be at least 6 months before we will need to do anything. At the end of 6 months if everything is holding we will probably do another bone marrow biopsy to see if the numbers have changed. If they have, then we might look at a consolidation treatment or some other therapy. The main question that my clinical trial wants answered is ‘how long of a remission will I get?’. Because this treatment is new no one really knows, but for now, it is working very well.

I know it is only by the grace of God that I am where I am today. So many things have happened to me that have just ‘fallen into place’. I don’t think it was an accident I became a patient of Dr. Kipps. I don’t think it was an accident that I only got a partial response from the first treatments at UCSD. I don’t think it was an accident that I got into a clinical trial even after I was almost disqualified twice. There were many times in my 10 year journey that I wondered if I would live to see my kids get married. Now this year, two of them are getting married. I am truly blessed and don’t take that lightly. I have so many wonderful family members and friends that have supported me. Thank you all.
Terry

03/17/11 – Boring once again

I feel strange writing when there is nothing going on. But because people are asking me what is going on, I feel compelled to update my blog and tell everyone that everything is going quite well. End of short report.

A short recap. On February 22nd I saw Dr. Kipps and everything looked good. However, the only way to really determine the depth of the remission is to do a bone marrow biopsy. So yesterday we went down to La Jolla and I once again got to experience the joy of a bone marrow biopsy. The best way to describe the procedure is that it is like taking a corkscrew and screwing it into your hip. Donna was watching it and was wondering if the Dr. was going to pull a cork out of my hip. It was a little uncomfortable, and I am a little sore today, but as I have experienced in the past, this will go away in a couple of days. I did get a blood test yesterday and all my numbers are good, and my liver enzymes are well within the normal limits.

On April 5th I go back down to La Jolla and see Dr. Kipps. At this time we will go over the results of the bone marrow biopsy, but my hope is that the results will be positive. I still feel good, playing golf on a regular basis, and planning trips to Maui and Seattle.

Boring Terry

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