Saturday, July 18, 2009

My MD Anderson Appointment - Medical Update

Several folks have emailed and asked about my appointment, so, here is the update. We got back from New York a week ago today, slept too late on Sunday for the early church service we attend, but did go to the adult Sunday School class I normally teach. I already had someone else to teach as I didn’t know if we would be back on time. I’m glad I did. After we got out at noon, we came home, changed, repacked and headed for Houston for my appointment with my CLL specialist. My grandson, Jonathan, rode with us because Cindy was also heading for Houston for her job. She had a class to teach on Monday and another on Tuesday.

After stopping in Brennan, TX, home of Blue Bell ice cream (they eat all they can and sell the rest), for our traditional ice cream cone, we arrived in Houston. I checked into the International Rotary House that is connected with MD Anderson and we got a free upgrade to a very nice suite. They were running short of the King room I always get (the cheapest), and since we were only there for one night, we got the suite. Sweet. Instead of waiting to get my blood drawn at the hotel where I would have been number 20 something in line, I walked across the skywalk and had my blood drawn at the regular clinic lab that was open on the second floor. There were only two people ahead of me so I was in and out in no time. I had two reasons for this. First, the actual appointment time for the blood draw was Monday morning with a 1 p.m. doctor appointment. By getting it done Sunday, I didn’t have to get up at any particular time and then go and wait a longer time up in the leukemia lab. Second, I didn’t want to wait at the hotel because we were going to be meeting with my nephew, Doug Redfield, and his family at their apartment in Katy, a suburb of Houston. We were to go out to dinner together. He and his family had moved to Houston only the week before. He works in computer programming (I think) and had started a new job with lots of responsibility. He has been working in this field for years.

Before we left our hotel, I called Cindy and she was all checked in at her hotel and had set up her training room for the next morning. She arrived at Doug’s only a minute or two behind us. We visited for a short time and then headed for dinner. After finding out the wait for a table was very long at our first choice, Saltgrass Steakhouse, we drove further on to Ruby Tuesday’s where there was no wait. I think there were eleven of us so we had a large table set up. We had a great time visiting and probably stayed too long at the table. However, there were no patrons waiting and the tip should have made up for it.

Cindy had her traveling babysitter, Tiffany, with her along with Gavin. Since she only had a room with two beds, Jonathan was going to be sleeping on the floor. Since we had a full suite, we had him stay with us and he slept out in the living room on the couch.

The next morning we took our time getting up and around and then went over to the cafeteria in the main building and had breakfast. Since it was close to eleven when we were done, we sat down in the Aquarium area on the first floor and Cheryl read her book. Jonathan and I played a sick game called, “Who Has the Cancer?” As people walked by we tried to figure out if they were a staff member, a family member, a friend, or the patient. Staff was easy because they wore ID badges. The others were sometimes easy, but not always. It really is sobering when you realize that everyone in that huge complex is somehow related to cancer. I pray someday there will be no need for that facility to exist and their motto, “Making Cancer History,” will become a reality.

About noon we went up to the 8th floor where the leukemia clinic resides. I had my vitals taken, paid my co-pay, and waited. Miraculously I was called in at my appointment time. First met with the nurse, as usual, but our regular nurse was on vacation so we saw someone new. Following the normal pattern, we were expecting to next meet with one or two young doctors, who I think are students. But much to our surprise, Dr. Wierda came in and without anyone else observing. He asked how I had been doing and about any symptoms. I told him about the concern I had a couple of months ago with the facial glands really getting large, my local doctor suspecting an infection and putting me on Levaquin, and then the nodes receding again, He confirmed that when the nodes under the ear get large quickly, it usually indicates an infection. He did seem a little surprised both sides had swollen. I then mentioned how weird this disease was because I had stabilized the last couple of months after some rapid progression. He again said that my disease wasn’t following the normal course anyway. He pulled up my blood work history on the computer and immediately noted that my cancer load had doubled in six months, one of the indications for treatment. My neutrophils were also low at 1.0. However, my platelets were all the way up to 135, the highest they have been at their lab in four years. Also, my IgG level was still over 900 and it was exactly three weeks since infusion.

Discussing with me how my lymphocyte count had slowed and then dropped a little the last two blood tests at home, and the fact my platelets were looking really good, he decided no chemo for now. He also said there are so many new treatment options right around the corner that he wouldn't even discuss treatment protocols with me right now because there will be a lot more choices when my time comes. Hmm, for the first time he didn’t mention FCR!! First he said to extend my IVIg infusions to every three months since my counts were up so good, but when I told him the last time I was down in the low 500's at the two month point, he said to go with every two months. He wants the level to be above 700, so he said when it is between 500 and 700 to have the infusion. At almost $14,000 billed to my insurance company for each infusion, I will gladly stretch it out as long as I can. He didn't say anything about a transplant this time which is also very good. He said he could feel "good size" nodes in my neck. No surprise there as I can feel them and see them.

Bottom line, still on watch and wait! Return appointment in six months with the understanding if things started changing with my monthly lab work to contact him.

I have now officially reached the three year anniversary since stopping chemo. If you remember, when we stopped at the end of July 2006, the doctor said it was to give my body a three to six month rest because I had not reached remission and bone marrow biopsy showed I still had 50% cancerous cells in my marrow (but down from 90%). As I have said before, I may not have reached remission, but this intermission has been just about as good. Also, the Great Physician’s time schedule has been much different than what my doctor predicted.

Thank you for your prayers. With your continued prayers, how much longer do you think I will be able to go without more chemotherapy? I wouldn’t even venture to guess because I have been wrong so much. Thank God!


David Arenson said...

Congratulations, Johm. I think your latest visit to MDA proves what many of us also find -- that assumptions made at the outset about length of remission and so forth may be incorrect, that things take their own course, and that the results can be different than expected. Glad your results are of the GOOD different variety!

Celeste Maia said...

Good news, John, you should be relieved. I bet you went out and celebrated afterwards! I hope you did. Three years without chemotherapy and why not another 3 and another 3 after that?

Anonymous said...

Congrats on your situation.

I will say that the thought that 'now is an exciting time for CLL', and 'new things are right around the corner' are really red herrings, in my opinion. It takes years for new drugs to be approved by the FDA, and even clinical trials take so long, and can be delayed and delayed.

My opinion now is that my treatment in 2006 came too late, so that I developed the 11q deletion. The delay was caused by me waiting and waiting and waiting for a clinical trial to open. It was a good clinical trial (HDMP+rituximab) but it took a year (!) to get open. My doc recommended treatment before then, but also recommended this trial.

In retrospect, I should have not waited for the trial; I should have just used the usual dose of HDMP+R. I know several people using that regime who are still in remission many years later.

Developing 11q and/or 17p deletions are 'ominous' developments, and can come from waiting too long. CLL has a notoriously unstable genome; waiting with large numbers of cells increases the likelihood of further damage and more refractory disease.

It is good to know more drugs are coming, but the time frame is longer than 'just around the corner'. Besides, I've been hearing from reputable people that same refrain for a decade. Still no cure...

Shari said...

I think the treatment decisions are one of the hardest parts of this disease. My John was diagnosed in June of 2007. His lymph nodes have been his only real issue, but they have always been an issue. With an occasional long acting steroid shot, he can get relief for up to a couple of months. And then they start coming back, getting large in various areas. At his next appointment in August, we will discuss chemotherapy. I hate to make that decision. I got excited when I read that the doctor wanted to wait because there are so many other options right around the corner. Then I felt deflated when I read the comment about waiting too long. You can never have certainty about any decision with CLL. I'm so glad you get to put off any decisions for another six months, John.

John Wagner said...

Dear Anonymous,
I never did say that 'now is an exciting time for CLL' or at least I can't find where I said it. I can't think of a context where I would ever call CLL exciting, including new treatment options. I think Dr. Wierda was probably referring to new clinical trials when he made the comment about upcoming options. And you are absolutely correct; waiting too long can have dire consequences. Unfortunately there is no magic formula. I am a conservative type and I think that once I fulfill all the established indications for treatment I would go for it as I did last time. The problem for me is deciding which treatment. My specialist and my local doc were not happy with my choice last time, but both have conceded that I have done much better than they ever imagined. I did know one fellow on the CLL forum who kept trying to decide which treatment and agonized over it until it was way too late. When he finally decided he had to do something, he was end stage and nothing worked.

I certainly can understand where you and John are with this disease. I do not present that strongly in the blood and mine resides mostly in the lymph nodes. My nodes have been up for several years now since treatment. Deciding what and when is very difficult. It takes listening to experts, prayer and then arriving at a decision and having peace with it and not looking back. It is tough.

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ann said...

I am always praying for you John, and for Cheryl and your whole family. You are a light of God's love and hope and provision. Thank you for your obedience to Him in sharing with us so candidly!