Date: February 24, 2006
by Forest Bump
Related Articles: Jenny Tells the Forest Story
My name's Forest, Forest Bump.
Two and a half years ago, I was diagnosed with CLL. I went to my regular PCP for some blood work. I'd had some problems with my sinuses. I figured it was nothing — every fall I seem to get sinus infections. I was also having problems with the glands in my neck, which for some reason were getting quite large. My PCP put me on the standard round of antibiotics. Then I went on vacation. When I returned home, there was a message to give them a call. The doctor wanted me to see a hematologist and have some more blood work done. No big deal. After seeing the local hematologist, I was scheduled for some more blood work, and a CAT scan. They called me and broke the news on the phone. I had CLL. This news put me inside what I call the crucible.
"Mama, always told me life was like a box of chocolates. You never knew what you was going to get."
I'm a jogger. I've been jogging for 23 years. Every other day, I run 3 to 4 miles. Sometimes I run with weights on my wrist, sometimes I just run a little further. In these 23 years, I probably only missed my run days a couple of times. I don't know why I run, and I don't know why I've been running for 23 years. I'm not a health nut and I don't compete in any marathons or any 5k races. I just run and run and run.
Of course this news about me having CLL put my family into a real tizzy. I have 3 grown kids and a wonderful wife. My oldest son started researching right away. He gathered all the info and shared his findings with us. There's an organization called the CLL Research Consortium. We retrieved a list of doctors from their site and decided to skip the local hematologist and move right to an expert. The local guy wanted me to start treatment right away. His nurse told my wife that I would be getting sick real fast. (Nice people.)
"Mama told me there would be people like this."
I traveled out of state for a good 2 years, seeing one of the experts, doing the watch and wait bit. Six months ago, it was decided that I needed treatment. My white count was way up, the hemoglobin was starting to be a problem and my lymphocytes had more then doubled, I think they tripled. They offered me a treatment plan, which would require me being out of state for 1 week a month for 6 months, plus some days in between. My wife had been learning all she could about CLL for 2 years and in that time she was able to glean a lot of information. CLL Topics was her main site for information. Some of that information included my particular profile, which wasn't so bad. I had the more indolent 13q deletion. This changed during the 2 year wait period to negative. In other words there was no deletion of any of the chromosomes. (At least that was known of or that they had a name for.) My CD38 was just slightly over twenty, twenty-two to be exact. I never was able to get my IGVH gene mutation status.
"I'm not real smart, and I don't know why this information is so hard to get. I'll have to ask Mama."
I was really bumpy. I was so bumpy, I hadn't worn a shirt without a collar for a year and at the ripe age of 51 I was growing my hair long to try to cover up all the bumps. I left my beard untrimmed and in full glory for so long, I was asked to play Santa Claus. The good doctor I was seeing wanted me to go into a clinical trial using fludarabine and rituximab and then a 6 week follow up with Campath. The Campath seemed pretty harsh for someone who only had a 13q deletion or no identifiable deletion.
Those who are interested can see all of this in my charts: Forest Bump's Charts.
During my 2 year wait, on the occasions when I couldn't do the trip out of state, I had seen Dr. Foon at the University of Pittsburgh Medical Center a couple of times. Since Campath didn't seem right for me, I contacted his office and found out he too was doing a clinical trial. His trial involved using Rituxan with fludarabine and cyclophosphamide. Only this trial was designed to use less chemo than is involved in normal treatment and lots more Rituxan. After looking at all the possibilities, and much prayer, I decided this was the way to go. My runs were starting to get a little shabby. My wife would stand at the side of the road and yell, run Forest, run. Some days I felt like my legs just wouldn't go anymore. One day I was running on a trail near my home, when a lady walked past me and asked, "Is that a jog or a walk?" I was furious. When I told my wife, she said, "Why didn't you tell her it was a wog or a jalk?"
The trial I just mentioned is the one Chaya had introduced to CLL Topics a few months ago. Prior to starting treatment I had a blood transfusion because of a low RBC, (2.72) and low hemoglobin, (7.5). My absolute lymphocyte count was 101.3, that's 94.4 percent of WBC. They did a lot of testing prior to starting me in this trial. They did the ZAP test and mine was ZAP+5. This is supposed to be associated with a more indolent disease.I enlisted in the trial and started treatment on Nov. 1st. The trial is 6 cylces, each cycle being 28 days. You can read about the treatment plan in the FCR Lite article. So far everything is going well. I have just finished my 4th cycle. The Rituxan doesn't seem to bother me too much. The chemo can get me down for a couple of days. I'm still running. Two days ago, I ran 54 minutes. I haven't ran 54 minutes for over a year. My white count is staying normal, around 7. My hemoglobin are going up and them old lymphocytes have met their match. They are about down to nothing right now. I had a cold right after Christmas; this went away with no problem. There are preventive medicines involved in this trial; they help with infections and keep the white count up. For the past year I've been dealing with some skin cancer on the side of my face. I finally switched doctors and am scheduled to have this removed via Mohs surgery. I'll be discussing this with Dr. Foon prior to having it done. Don't get me wrong; this isn't a piece of cake. Going through this treatment in the bleak of mid-winter sure has some drawbacks. A little sunshine would be nice and some golf and fishing would be even better. I've had some trouble with them sticking those needles in me. One day I came home looking like a pincushion. I'm still working and some times I wish I had taken the time off. I'm tired most of the time. I go to bed early and still getting this butt out of bed in the morning is a real drag. There's a lot of anxiety that goes along with having CLL. Some of us don't really like to think about it, much less talk about it.
I'll write later and let everyone know how this all ends up. Thanks to the information on this site, and much prayer, I believe I made the right choice. I've often wondered why I wasn't getting more helpful information from the professional medical society with this disease. It seems that each one of them is playing their own tune and they're not really looking at us from an individual perspective. And this is an individual disease; each one of us is different. I'm sure someday they'll be able to break the code. Put each of us in the right column, with the right treatment plan. But until then I would suggest the following: study your profile, know what your profile means, be proactive, don't be afraid to question the medical society, and if you're like me and don't really get into all this jargon, take your wife (or husband) and let her (him) be the bulldog.
Still running and no longer bumpy,
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