Thursday, December 08, 2005

The Rest of the Diagnosis

Well, I am getting started on this earlier today. Austin, Texas had an ice storm last night and most everything is closed down, including the Department of State Health Services where I work. I was scheduled for blood work at 2:00 this afternoon and they just called me and canceled that. I am scheduled for a CT scan tomorrow morning. I don’t know if that will happen or not. I may be drinking that stuff tonight for naught. We may get above freezing this afternoon, but tonight will be in the teens and that is the coldest it has been in several years. To my family in upstate NY and Denise in New Jersey, if you are reading this you may wonder what the big deal is. But this is Texas and we don’t know how to deal with this type of weather. It is hard to believe we were in the mid 80’s this weekend. But, we will be back into the 60’s this Saturday.

Well, back to my story. We had left Houston feeling very good. That next weekend, my daughter, Cheri, and her husband and two kids moved down from San Angelo, TX. For several years, we had wanted them to come here to join us and my youngest daughter, Cindy, and her family. Family is very important to us and that drive (over 200 miles) for visits was not as often as we would have liked. She had been considering it for some time. She called me near the beginning of May and said there had been so many things to make her think that now was the time to move, especially my diagnosis. She said God made it very plain to her as she had just, very unexpectedly, lost her job. Neither she nor her husband and been that happy in their current positions. I told her to put their house on the market and come stay with us until they got established. By mid May, before moving here, both of them had new jobs lined up to begin after Memorial Day. She is a CPA and her husband is a great, long-time automobile mechanic. Both jobs were at a great pay increase from what they had been earning. I don’t know why I keep being amazed at how God always works things out. By the way, my other son-in-law is a licensed funeral director, even though he currently does something with computers, guiding drillers out in the oil fields. Between him and my auto-mechanic son-in-law, I figure whatever breaks down with me, body or car, one of them can take care of it.

My ENT appointment was supposed to have been the Monday that I had the MD Anderson appointment, so I changed it for the following week. I was still losing my voice occasionally, sometimes for a couple of days at a time. I was more very hoarse than complete voice loss, almost to a whisper. So, I went to the ENT doctor (my 5th specialist) and he did the scope with a camera down my throat. He thought the hoarseness was the result of the masses in my neck crowding in on the vocal chords (what my primary care physician thought). When he was squeezing (CHOKING!) my neck he said he could feel a bunch of them. He ordered the results of the CT scan I had in April so he could see which lymph nodes were swelled and "glowed." Now the plan was for me to go back to him in four months as he wanted to keep an eye on it. I must confess that I haven’t been back. Once in a great while, the hoarseness comes back, but not often and not for long.

By June, I still didn’t have my follow-up appointment at MD Anderson, so I called down. The nurse was surprised nobody had called me. Eventually I got an appointment for June 20th.

By the way, the bill came in the mail the Saturday before and that ONE day's worth of tests cost $18,000! My insurance has paid all but $130! Thank You Lord!

Again, like my initial results, the results were very good. In fact, except for two areas, they could not have been much better as far as prognosis for my leukemia!

The two areas that could have been better:
1. I have a pattern of both nodular and interstitial pattern of infiltration of the bone marrow, in other words, mixed. So what does that mean? Well here is a quote from an article in the National Library of Medicine: "The statistical analysis of survival curves reveals significant differences in the probability for survival to be met with in types with morphologically limited bone-marrow infiltration in the sense of a proceeding deterioration of prognosis in the following order: interstitial, nodular, mixed, and diffuse type." So you can see, if you can interpret that, it is not the very worse prognosis as it is not diffuse.

2. The amount of infiltration of the bone marrow two months previous was 70%. The result of this biopsy was: "Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma involving 80-90% of cellularity." So, it has progressed some in the last two months. However, that does not seem to be a very big worry to Doctor Weirda. (Certainly not as big a worry as Cheryl has about that.) So what is the significance of the percent of infiltration? Well, the more compromised the bone marrow becomes, the more the bone marrow may not be able to make the necessary cell lines it is designed to make, such as platelets and red blood cells.

They also took more blood at that appointment, but only five tubes, that time. My white blood cell count only climbed a little, neutrophils and hemoglobin dropped some more, lymphocytes climbed more but so did my platelets, all the way up to 118, which is good. (Between 140 and 400 is normal). The rest of the news was all good in the prognostic indicators:

Negative for CD38; ZAP-70 negative; IgVH Mutated; 13q deletion, B2M 1.8 So, what does all that gobbledy gook mean? It means that my leukemia is not real aggressive, fairly slow growing, and when I do start treatment, I have an excellent chance of being able to go into remission with the standard "cocktail" of chemo treatment (remember, there is no “cure,” but a two or three year remission is what is hoped for!) .

Now, you may have noticed that there was an addition to the diagnosis that wasn’t there with Dr. Netaji. That is the SLL (Small Lymphocytic Lymphoma). Of course I went back to the computer to research. It is a Non-Hodgkin’s Lymphoma, but so closely related to CLL that many doctors basically consider it as one disease. Certainly the treatment is the same. One is more cancer of the blood and the other is more cancer of the bone marrow. That is the reason my lymph nodes are all swollen.

So, bottom line is that I am on "watch and wait" for now – or perhaps better stated, “watch and worry.” That means watch all the blood indicators and watch for serious symptoms to develop and wait for treatment. At first I thought it would be frustrating to have to wait for treatment (and to some extent it is), but the more I read, the more I realize that it is a true blessing to put off the treatment for as long as possible. The treatment can do some pretty nasty stuff to the rest of the body and has some very long lasting to permanent side effects. That is why it is always advisable to wait as long as one can if your prognostic indicators are on the good side. There are members of ACOR that have had this for many, many years without any treatment and others who have had to begin treatment right after diagnosis. As the doctor said, the longer one can wait, the probability that better treatments will have been developed when it is time to treat. None of the chemo treatments have actually proven to prolong survivability at this point. They just take care of symptoms and put it into remission for variable periods of time. The only known “cure” that I am aware of happened to Tom McCune after an autologous bone marrow transplant in 1990. (I just added his link off to the side here.) His latest tests in June of this year still have everything in the normal range. Way to go Tom!

Dr. Wierda said I would be an excellent candidate for a clinical trial he was currently running, but there was no pressing need to start it then. He is doing FCMR, which is FCR + mitoxantrone. Requirements are to be less than 70 yrs old + B2M less than 4.0. The second study he is doing is CFAR which is cyclophosphamide/ fludarabine/ alemtuzumab/ rituximab. Requirements less than 70 yrs old and B2M of more than 4.0. However, for now, I will just have blood drawn periodically and keep track of those numbers and watch for serious symptoms. The only symptoms I am having right now are swollen lymph nodes, tiredness/fatigue and sporadic hoarseness. I can live with those - literally!

You know, I said it was all good news, but it is kind of like saying, "Wow, I lost my house in the tornado, broke my leg, and got a concussion, but at least I wasn't killed." It's all relative.

I had a regular scheduled appointment with Dr. Netaji in June the next week and he agreed with everything from MD Anderson and we are going to do the "watch and wait" with periodic blood tests. Of course, the blood tests he did then weren't significantly different from the previous week down in Houston. He said that a jump up and down of 20% in the various numbers is "normal." He did agree with Cheryl -- guys hate it when their spouse is right! -- that the 80% to 90% of bone marrow involvement could become / is a concern because as more and more of the marrow gets filled up with the cancerous cells, it won't be able to do it's job and that is when I will start getting infections, get more anemic and have bruising problems, etc. Of course when that type of stuff starts, that is another indicator that it is time to treat. He did say he had seen a case of someone that had 90% involvement of the marrow and it stayed that way for years. So you never know. There are enough people praying for me that I could live to be an old man -- oh, wait, I am old. I just read an article about the elderly and they were talking about someone who was 60 -- sigh. I don't consider that elderly anymore. My grandkids are now calling me “elderly.”

Well, it is now mid-afternoon, the temperature has climbed to 33, the sun is shining and the ice is melting! It is turning out to be a nice day. I will catch up everything else tomorrow on the next post! Halleluiah!


Marc said...

John, after commenting on my blog, I discovered your blog.

It's great! I find it's good to get these things down in writing. I am jealous, however, that you have more comments on you blog then mine :(

I'm also publishing another blog dedicated to spreading the word about flaws in current US health care policy, and the need for a single payer health care system in the US. So that takes up some of my time also.

Anywaze, to get on with the reason I am writing, is I noticed that you stated that you are IgVH mutated. I hope they told you which gene is mutated and how much.

It seems that some genes have a better prognosis then others. I'll have to research that again in my data base, and send it to you when I find it.

I remember because it was the same for MCL. Fortunately I had one of good mutated genes, but I also noticed that the ones that had a decent prognosis for MCL had a bad prognosis for CLL and vice versa. I thought that was interesting.

Oh if life was only simple. :)

Again, here's to a great 2006 and a better 2007.

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