Waiting on a Bone Marrow Transplant.

Dear Friends,

Many of you have been praying for Dave's recovery, and for that he is appreciative.

He's asked me to update you on his condition. As you know if you've read the previous posts linked below, Dave's been fighting what's known as Chronic Myelogenous Leukemia for several years. Last year he began a clinical trial with drug maker Novartis, using Tasigna, a relatively new drug with promising results. Without getting too technical, this drug prevents the bone marrow from overproducing the white blood cells that literally crowd out the red blood cells we all need to live.

For reasons yet unknown, Dave's disease became quite aggressive in the past several weeks, causing him a great deal of fatigue and discomfort as the CML shifted from "chronic" to "acute".

Since he was admitted into UC Davis Medical Center in Sacramento three weeks ago, Dave has been undergoing extensive tests for a bone marrow transplant. His oncologists are searching for an appropriate match in the bone marrow donor database and as soon as one is found, the transplant will take place.

Meanwhile, his immune system is virtually non-existent and he's being kept in an isolation unit. Visitors must gown up as thoroughly as an OR surgeon to ensure Dave is not exposed to any bacteria, virus, or germ that could complicate his condition.

Dave doesn't yet have his personal computer with him, but we're hoping that will change very soon. He's looking forward to getting back online and emailing with you!

We will keep you posted as soon as there's something new to report. Thank you for your emails (send to him in care of me at: Radiopatriot@gmail.com), phone calls and prayers. You have no idea how much they cheer him.

Here are the previous posts by Dave about CML

TWD Update: UC Davis Cancer Center, Tasigna and CML - July 29, 2010

TWD UPDATE PT. 2: TASIGNA + 30 DAYS - Sept. 8, 2010

TWD UPDATE PT 3: CML, TASIGNA + 60 DAYS - Nov. 7, 2010

Scroll down to read my last two reports.

TWD UPDATE PT 3: CML, TASIGNA + 60 DAYS

I'm now 60 days into the TASIGNA drug trial, with some test results remaining the same and one huge area of improvement.

First off, here are the basics: I tipped the scales at 160.5 lbs; Blood pressure 122/82; pulse 84. Still need to pick up another 20 lbs or so, but my weight loss has stopped and I'm stable in that area.

Blood results: White Blood Count is holding at 3,500 (normal is 5-10k). Last month we reduced my dosage in order to raise my WBC to normal. That didn't happen but the Dr is not concerned about it. We just need to keep it from moving above normal limits.

The huge news this month: Testing prior to this review showed my blood platelets were into the danger zone--very low count. Platelets are important because that's what allows your blood to clot. And leukemia wins when you begin to bleed and it can't be stopped. With this type of leukemia, it's either bleeding or an infection that gets you.

Testing this month for my platelet levels returned a reading of "NORMAL." Yes, normal--just like healthy folks. My Dr. was somewhat surprised at the rapid increase in improvement. Me, I was wondering why I wasn't told about the platelet levels in the beginning, but quickly realized docs don't like to scare you if they can avoid it. I want to know it all--good or bad. Next visit this will be made clear to my doctor. By the way, my doctor is one of the finest I've ever been to. His office is operated in a most efficient and professional manner, and it makes going to an appointment practically enjoyable. He graduated from the University of Wisconsin, and by the look of him I'd say that was about 20 years ago.

Months ago, when he first examined me, I was in bad shape. Worse than I realized. He completed his examine, did a quick consult and went for the door. Fast, I thought. Then about 3 seconds later, he popped his head back in the door and said, "Don't worry, I'll have you feeling better soon." I was sold.

The bad news is really good news, but I still don't like it. In order for researchers to determine exactly how successful this therapy is, they have to do a bone marrow biopsy. This allows them to calculate the percentage of cancerous white blood cells. The lower the better, of course. None at all is my destination. The procedure is most unpleasant, so I'm not looking forward to it, at all.

If you're interested, this short video gives the latest news about Chronic Myeloid Leukemia. And this short animation shows how CML begins and progresses in your body.

TWD Update 1

TWD Update 2

Blessings to everyone--thanks for the prayers and please keep 'em comin'. No doctor can write a Rx as effective as your thoughts and prayers.

***

TWD UPDATE PT. 2: TASIGNA + 30 DAYS

*The first TWD Update is here.

Since the first update a lot has happened. A month ago I began taking a new generation cancer drug--TASIGNA. The drug was just approved by the FDA in June and I'm part of the ongoing clinical trial. If Tasigna continues its success rate, it will replace Gleevec as the first-line defense against Chronic Myeloid Leukemia.

In the short span of a month, this is where I'm at:

White blood cell counts are the most important item tracked on the blood test. In June my WBC was 32,000 (normal is 5-10k.) We expected it to rise prior to medication to about 40,000. We were wrong. It skyrocketed to 105,000--30 days ago. This is a place you really don't want to be.

I began with 300mgs of Tasigna, and within the first few days I had every side-effect in the book. It's a thick book. My doctor brought me back in a few days later to see how I was tolerating the meds. I survived all side-effects, even the big one: Sudden Cardiac Death. This is always a good sign, or so I'm told. After seeing the results, the doctor then doubled the dosage to 600mg. I thought since 300mgs was so much fun, 600 should be a blast! Actually, it wasn't that bad.

As the days went by, my body began fighting off the side-effects, but a couple remain with me. This is normal and I can live with it.

I'm supposed to weigh 185 lbs. At one time I dipped into the high 140s. I began treatment at 154 lbs, and today I weighed in at 160.5 lbs--when you lose that much weight, you begin counting those half pounds. Gaining weight is very good sign.

Today my WBC registered 3,500 (normal is 5-10k.) My doctor said it's off-the-charts good news. However, he said the drug was working too well and we'd have to reduce the daily dosage to 450mgs. The idea here is to raise my WBC to within the normal range of 5-10k. This should be no problem.

Because of today's outstanding test results, my doctor has already ordered additional and advanced blood tests that will examine down to the cellular level to see if the Philadelphia Chromosome is packing its bags and leaving town. The goal of this drug is to add yrs to one's survival or rid the body of the PC. If you can rid your system of the PC, you're essentially cured. And there are many cases of this on record. I plan to be added to that list.

Many wonderful people have included me in their daily prayers. Words escape me--Thank You wouldn't be enough. But please keep me in your prayers because they're the best damn health coverage I could ever hope to have.

Blessings from me to you.

UC Davis Medical Center--Sacramento

TWD UPDATE: UC DAVIS CANCER CENTER, TASIGNA AND CML

Labs--mobile blogging from the UC Davis Cancer Center.
The wheels of modern American medicine are just beginning to turn for me, again. Tomorrow, Friday, I will get my final instructions on how my doctors will be proceeding with my treatment of CML, a clinical trial involving a drug called TASIGNA. I had a briefing today on what TASIGNA is but the exact plan is being formulated later today and in the morning, with adjustments based on today's lab results.

My labs from over a month ago showed my white blood count at 32,000--normal is 5-10k--and today my spleen showed the first signs of enlargement, which means my spleen is unable to filter out the onslaught of immature white blood cells. Since my spleen is enlarging, I expect a white count of over 40,000, possibly near 50k. Nothing alarming there since things don't get dicey until they reach the 100k level, but the disease is obviously back in force and with a number of other symptoms tagging along: dizzyness, joint stiffness, weight loss and extreme fatigue, to name a few.

Some preliminary plans were laid out today as well: pharmacy near my home for easy access to TASIGNA, and my doctor is moving my immediate care follow-ups in these early stages to my town--he has an office just down the street from me. How lucky was that? Very. However, if other treatment is called for, I will have to do that at the UC Davis Medical Center in Sacramento.

As with Gleevec, TASIGNA has some cardiac considerations, and today's EKG showed I was ok in that department. (I would've had a pic of that but it wasn't pretty--the gown and all.) These new cancer drugs are amazingly effective but come with a thousand possible side effects. However, I had very few with the Gleevec, and those were minor. I expect the same with TASIGNA. I'd tell you how much this drug costs but you wouldn't believe me.

That's about it for today's medical events. All in all, it was a great day. Friday I'll have a conference call to nail down all the particulars, and then move forward. Not diggin' one foxhole on this end!

Also, when this journey began for me in early 2007, I don't think I ever wrote about it, thinking it was a downer of sorts for people to read. We all have problems and I figure you really don't need or want to know mine. Many people have emailed, called, and sent letters wanting to know how I'm doing, wishing me well. So I decided I'll give a few reports at the beginning. I've documented each step of this process in detail, and at a later date it's possible that I'll put all of it together.

As a tease, though, part of today's discussions involved health care reform--but not from my doctor. I was floored, to say the least. After a few minutes of this, I made one comment and then thought better of it and shut my mouth. But I did want to get up off the table and give a 5 minute block of instruction on the greatness of our country, and I could still make that speech if this topic comes up again.

Thanks for all the support. You have no idea how important it is. God Bless each of ya!