2007-February

Plan “B”

Rituxan failed to achieve remission and the next steps had to be carefully planned and executed. One of the things I dreaded most had to be done yet again. That was necessary to get Plan “B” in progress.

List of events

  1. February 16, 2007 — Moving Forward
  2. February 19, 2007 — Time for a Dreaded Test
  3. February 23, 2007 — Time for the Test Results
  1. February 16, 2007 — Moving Forward
    The battle plan was to use Rituxan again and I immediately received four treatments on 12/20, 12/27, 1/3, & 1/10. However, the CAT scan I had done on February 9, 2007, indicated the cancer did not respond to this treatment regimen. And this is the very first time I have faced this type of situation. My goal is to hold onto hope and my faith; and I choose to maintain a very positive outlook. I also know my family and friends will continue to offer encouragement and support along the way.

    My oncologist has already gotten me into KU Medical Center’s Cancer Center where I had my first evaluation on Wednesday. Next, I will have a bone marrow test done on Monday, 2/19, and based upon the results we will plan my next treatment regimen. Right now the preliminary plan is to start the stem cell transplant process by harvesting my stem cells and holding them. Then use a radioimmunotherapy (RIT) treatment regimen called Zevalin in an attempt to get the cancer back into complete remission. I am also told there are other new treatment options available as a backup to this plan. But ultimately the stem cell transplant is the tool I have if need be. This is all going to happen real fast with a lot of preliminary tests and the new procedures. I must say it is exciting for me to have this opportunity.

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  2. February 19, 2007 — Time for a Dreaded Test
    I go up this morning raring to get started with the day’s plans, and to get the morning over with. I have had four bone marrow tests done in the past eleven years. And I didn’t have any interest in getting another one done in my entire lifetime. But as things turned out I met a wonderful nurse practitioner this morning that has a lot of experience in this business. And the morning didn’t go so bad after all. Over the years I have coined a little saying, “There’s just one thing that money can’t buy and that’s experience.” And I’m sure anyone who has had the BMT done will agree that when someone is headed into your back for a bone marrow aspiration and a bone marrow biopsy you want experience on the other end of the instruments. Without that key person it can be a pretty difficult procedure (I had one like that so I know firsthand).

    I was told last week by my transplant coordinator that people request this nurse when they have to get the BMT redone, and now I know why. It was much easier than my last test and I was almost excited when she showed me the samples she had taken from my body. That little bone core reminded me of the pavement core samples one of my engineer buddies has sitting on his desk. And the marrow sample looked much like the blood drawn in any routine blood test. But the most exciting time for me this morning was to hear the nurse say she was all done. What a relief!

    The test started off with them giving me a fentanyl sucker to place between my teeth and my cheek. I had that in my mouth for a little while before the actual test started. Then she numbed my back and started procedure. I felt the feeling of the marrow being aspirated and was glad when it was finished. But then she said we were half finished and I got a bit nervous. I did remember there were two procedures being done, and I asked when it was over to make sure I understood correctly. The part I didn’t remember at the time was how removing that core was going to feel. And lying on that procedure table thinking I was finished then hearing I was only half finished kind of caused a panic for a minute. That’s when I grabbed the nurse’s hand that was assisting with the procedure. I needed that reinforcement at the time. But it was over in a jiffy and I kind of enjoyed seeing those specimens that belonged in my back. I also told the lab technician not to loose them on her way back to the laboratory.

    One last detail is that my wife Debbie stayed in the room with me. I didn’t really want her there because she passed out after they called my doctor into the room when the procedure went bad back in 2001. When doc showed us the bent instrument that pretty much did her in so I wasn’t sure she was up to it again. The ladies just struck up a conversation and kept it going while the test was done. It worked great and I am very blessed to have had a wonderful day.

    I am in the waiting queue again. It will be a couple of days for the preliminary results and about ten days for the final reports. Based upon that I’ll know the direction we are headed.

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  3. February 23, 2007 — Time for the Test Results
    It has been a long week waiting on answers from my doctor. However, late this afternoon I got the telephone call I had been anxiously waiting for. The preliminary test results indicate there is no involvement of cancer in my bone marrow. While I don’t pretend to understand all the technical details about this I was told it is highly unusual for a NHL patient not to have involvement in their bone marrow. In my case I have had five bone marrow tests. First, there were two of them when I was originally diagnosed (left and right sides at the same time). Next, I had one when I was diagnosed with my first recurrence, and again just a few months later when I was a candidate for a stem cell transplant in 2001. Most recently I had the test done earlier this week. Each time I have been given the same results for which I am very grateful.

    With that information in hand I was told we are going to proceed by scheduling the battery of tests for the stem cell transplant. My coordinator is trying to get them all organized for the same day to help me save sick days at work. Once all that is finished and I have passed all the tests I will start the stem cell collection process. Then with my stem cells stored as a backup plan we will do Zevalin treatments with hopes of putting this beast back into complete remission.

    Finally, I have read recently that people are saying NHL is one of the cancers that can be considered a chronic illness. Well, I must say, I was skeptical about that in the beginning because I wondered what I would say to a person when they reported their treatment regimen had failed. Now that I am one of those people I can tell you I don’t think it is safe to talk like that. If people don’t think this cancer is an emergency situation, and if they don’t consider it to be the crisis it really is for those of us who deal with it, they may slow down or halt the research to find a cure. I vote that we keep this disease prioritized until there is a treatment that consistently works for people! After all our lives and our quality of life is at stake here.

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