A New Report for a New Year

Well, in October Dr. Kipps told me to return in 3 ½ months. On Tuesday I returned, knowing in the last few months my blood numbers had remained steady, and what lymph nodes I thought I could feel, seemed pretty small to me. It turned out my blood numbers had gone up ever so slightly, but still in the ‘normal’ range. He could feel the lymph nodes, but said that they were ones he had felt before. His comment to us was that this was ‘an excellent exam and see you in six months’. End of Short Report.

Dr. Kipps ran a couple of extra tests that can further check for disease progression, but these tests will take a couple of days to get the results. He said he didn’t think that there was going to be much going on, but he wants to check just the same. I have been trying to find a local oncologist that can deal with any day to day issues and think that I have found one. Several people in my CLL Support Group have seen the same doctor in Fullerton and Dr. Kipps has worked with him (or he with Dr. Kipps), so I will make an appointment with Dr. Sharma in the next 2-3 months. After discussing my plan with Dr. Kipps, he said there was no need for me to come back to see him for SIX MONTHS. That will be the longest that I have gone without seeing him since that first appointment in November of 2007.

My goal is to remain in remission as long as I can because there are some amazing new developments in the treatment arena. Two of my CLL friends are enrolling in Clinical Trials for a new drug that has shown remarkable results. There are several other new treatments that have shown equally promising results, but are just in the beginning stages of Clinical Trials. I am hoping by the time I need treatment again, there will be something non-toxic (read non-chemotherapy) that will be available for me.
It seems like between the times that I post there has been another friend diagnosed with cancer. A Credit Union friend’s husband is being treated for Diffuse Large B-Cell Lymphoma, and is responding to treatment. A friend from church had a bone marrow transplant for a bone marrow disorder and is now in full remission. Our friend who has Melanoma has had VERY aggressive treatment, but she is responding well and just got back today from a 2 week RV vacation. Another friend from my CLL support group received a new type of bone marrow transplant at Stanford and is now back home in remission.

2011 was a big year for the Evans Family, two marriages of the Evans children, a 40 year anniversary for Donna and me, the marriage of our nephew, and the birth of our first grandson Wyatt James Watkinson. Four years ago I was not sure if I would ever see any of these things, but by the grace of God, here I am. You learn to appreciate all of those things you took for granted. Every day is a gift, enjoy each and every one of them.

I am blessed to have such a great family and friends.
Terry

10/15/11 - I'm BAAAAAACK!

A few of you may have wondered what is happening to me. I have not written a blog update in 3 months. My thoughts were if nothing is going on, then there is no need to report anything. I may have to revise that thinking. I was starting to get emails asking if I was all right. But as a general rule no news is good news, and that is the case with me. I just had my 3 month checkup with Dr. Kipps on Friday and he once again gave me a clean bill of health. End of Short Report.

Even though I get blood tests every month before my IVIG infusion, it is always in the back of my mind that there may be something else going on. All my blood tests have been good for the last 3 months and my blood test from yesterday was actually better than 2 weeks ago. My physical exam proved to be unexciting, with no lymph nodes or spleen felt by the good doctor. He is encouraged by my continued excellent response and said he didn’t need to see me for 3 ½ months. I asked him about the others that were on the same trial that I was on and he said they are all doing pretty much the same as I am. Dr. Kipps is more optimistic than I have ever seen him and he is really encouraged by all the new therapies that are being developed. If and when I need treatment again, there will be something even better out there for me. There is already a new version of ABT-263 (the one that I took) in Clinical Trials. There are also three new drugs that are showing great promise.

So since there is nothing going on with my CLL I guess I will have to discuss other issues. As with most people that have lived in Southern California for some time, I have wound up with some pre cancerous skin issues called AK (Actinic keratosis) on my face. I started a skin treatment called Zyclara, which is a cream you rub on the lesions and it generates a reaction in your body’s immune system killing the AK cells. As with most men, I have been reluctant to visit the dermatologist on a regular basis, but because of my increased risk of skin cancer I have decided to be more diligent about this and try to be proactive in eliminating some of these skin issues. I encourage you all to do the same.
This last month has been an exciting one for the Evans Family. In September our youngest son Matt got married to his long time girlfriend Randi. The wedding took place in Seattle (where Randi is from) and was attended by most all of the family members and some friends from Southern California even made the trip up north. It was a great event and Matt and Randi honeymooned in Maui after the wedding.

Because our life has been free of treatments for a while, we have finally started to do some traveling again. After the wedding we continued up into Canada with our friends John & Toni. We had a great time traveling around British Columbia and seeing all the amazing sites. Who knew Canada had a great wine region called the Okanagan Valley? We are also planning trips to Seattle, a couple of weeks in Palm Desert, a possible trip to Sedona and then a trip to Hawaii early next year. We have to be careful with our trip planning; working all the trips around the arrival of our first grandchild in late November, or early December.

Even though my situation seems to be on hold for the time being, life’s challenges continue for others. Last week we lost a friend from church who had been battling Multiple Myeloma for 1 ½ years. Our prayers go out to her family. We also have another friend who is in the midst of chemotherapy for treatment of Melanoma and is dealing with treatments, tests, doctor visits and insurance issues. Believe me when I say to you (Carol & Larry) that I’ve been there and there is light at the end of the tunnel.

Speaking of insurance. After many years with the same insurance through my work, they are now making a change. I have been very fortunate that I have had excellent coverage over the past 4 years during all of my treatment. Now I don’t know what is going to happen. All of my approvals, doctors, prescriptions will all have to be redone; I don’t look forward to that. PLUS, much to my dismay, I will go on Medicare this year. I have heard conflicting reports on the quality of Medicare coverage; plus making decisions on the supplemental plans is going to be an additional challenge.

I will be more prompt in the future with my updates, even if I don’t earth shattering medical news.

Terry

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/