Wednesday, December 31, 2008
Wednesday, December 24, 2008
Monday, December 15, 2008
Updated Treatment Dates
The folks at OU Medical Center called today to advise me of a change in dates. The dosimetric dose (the little one) is moved from 1/2/09 to 1/8/09. The therapeutic dose (the big one) has been moved from 1/9/09 to 1/15/09. There is not a problem, or any change to the treatment. Normally, Bexxar is administered on Thursdays. 1/2 and 1/9 are Fridays (Thursday 1/1 is a holiday) and were originally set on those dates to try to squeeze me in a little sooner. Turns out that won't work so the next available dates were set up. So, we're still on track, just about a week later.
Saturday, December 13, 2008
Will Bexxar Make Me Sick?
Another dandy question from Cousin Kimmie of Denver. It will make me sick but not in the same manner as regular chemotherapy. As everyone knows, or probably has heard, chemo can wreak havoc on a body. The full course of most chemo treatment goes on for weeks or months, or longer in some cases. My first chemo started in March, 2004 and ended September, 2004. That therapy was called CHOP+R. The individual drugs included cyclophosphamide, adriamycin, vincristine, prednisone (HUGE doses of that), and Rituxan. Each session took about 5 or 6 hours to administer the full doses of the various chemo drugs, then I got 3 weeks off to "recover". Chemo caused hair loss, fatigue, some nausea (usually for 1 to 2 days following treatment, but drugs for that helped a lot), fatigue, muscle weakness, fatigue, a few sores in my mouth and throat, fatigue, dizziness at times, and I usually had trouble sleeping until I got some really great drugs for that. Oh, and fatigue. A complication arose from my infusion port (a piece of hardware in my chest where the drugs were administered) that created a large blood clot in my shoulder and arm, where the tube entered a large artery. Once identified, the clot was cleared out in about 6 weeks.
Bexxar is not in the same family as most of those chemo drugs, except Rituxan, a monoclonal antibody similar to one of the ingredients in Bexxar. The side effects will be different and probably less severe. My hair won't fall out (don't have much left anyway), no nausea, no sores, no clots, no dizziness (subject to results of my Scotch Clinical Trial). But, the fatigue will be an issue caused by cytopenia (low blood counts). How much and how long that will last is unknown until we get down the road with this. The drug will be "pushed" through an IV in two sessions. No infusion port will have to be plugged into my chest again.
Oooooo. I kind of sound like I know what I'm talking about. Kind of like a doctor. Yeah, that's it, I'm....Dr. Scott, that's the ticket. Meet my nurse, Morgan Fairchild.
Bexxar is not in the same family as most of those chemo drugs, except Rituxan, a monoclonal antibody similar to one of the ingredients in Bexxar. The side effects will be different and probably less severe. My hair won't fall out (don't have much left anyway), no nausea, no sores, no clots, no dizziness (subject to results of my Scotch Clinical Trial). But, the fatigue will be an issue caused by cytopenia (low blood counts). How much and how long that will last is unknown until we get down the road with this. The drug will be "pushed" through an IV in two sessions. No infusion port will have to be plugged into my chest again.
Oooooo. I kind of sound like I know what I'm talking about. Kind of like a doctor. Yeah, that's it, I'm....Dr. Scott, that's the ticket. Meet my nurse, Morgan Fairchild.
Thursday, December 11, 2008
The Plan
Today, Teresa and I visited Dr. Selby at OU Medical Center, then with Dr. Thompson, who will be my radiation oncologist. Boy, did we get an earful! Our brains are still trying to process all of the information. It's kind of like our brains are 5 pound size bags, and they were trying to stuff 20 pounds of stuff in them. Anyway, fasten your seatbelts, here's the dealio.
As previously written, the bone marrow biopsy results were negative, meaning no cancer cells in my bone marrow. That's good. Selby told us about the CT scan result. It shows an image in my abdominal area that is very likely nothing but scar tissue from previous chemo treatments and tumors in that region from before. That's what they think and they are sticking to it. My recent blood work has all come back normal. So, that all adds up to the conclusion that there are no, or very, very few, cancer cells anywhere except the lump in my neck just below my jaw. That makes me an excellent candidate for radioimmunotherapy (described in an earlier post, but I'll be glad to cover that again if anyone wants me to). There are two choices, or types, of radioimmunotherapy. One is Bexxar and the other is Zevalin. And the winner is...BEXXAR, by GlaxoSmithCline Labratories!
Bexxar treatments will begin on 1/2/09. There are only two treatment days, unlike chemo that takes weeks or months. The next treatment date is 1/9/09. In the meantime, I'll have at least one more blood test. The first treatment is called the dosing treatment. I'll be given a small amount of the drug, then tested almost daily during the week until the next treatment. The purpose of dosing is to determine how quickly the drug clears out of me. Fast clearing = higher dose, slower clearing = lower dose. I'll have three special scans and more blood test. The scans are done by a machine that specifically detects and tracks traces of the drug. It's probably an old Geiger counter from the 40's that was used after nuclear bomb tests, but we'll act like it's a brand new, cutting edge technology thing-a-ma-jig just to make the doctors feel important. By 1/9/09 they will know how much of a dose to give me, that's called the therapeutic dose. It delivers what should be all of the drug that I'll need to knock out the cancer.
We should know by the end of January if it worked, or is working, just by seeing if the tumor starts shrinking. I'll have weekly blood tests for 12 weeks after to watch my blood cell counts. I will probably experience low blood counts, possibly down to dangerously low levels. My immune system will be more or less in a tailspin, so no visitors, please. I don't want to catch your nasty viruses. Blood counts should be back to normal in 2 to 4 months after treatment. Low blood count, called cytopenia, is the most common and most likely side effect. Hypothroidism is another potential side effect. I'll be given medication before the treatment to counteract that possibility. More thyroid drugs may be prescribed if needed. Fatigue will be a big deal, they said, as a result of the cytopenia. So give me a break if you see my lazy ass spread all over the sofa all day (I know that's not much of a change, but now I have an excuse). As with any cancer drug, there's a list of potential side effects about a mile long. Rather than list them all here I'll just talk about them in future posts if they appear.
I asked the doctors what I could do nutritionally to try to reduce side effects. When I suggested Scotch as a therapy, he disagreed. I think he's wrong. I will conduct my own clinical trial on that. He did say something that I liked. He said I should take mult-vitamins with iron, and to EAT LOTS OF RED MEAT! My menu will now consist of cow for breakfast, cow for lunch and cow for dinner. I'll have a t-bone with sides of cheesburger and roast beef. I'll probably start mooing.
As for work I'll continue with that until I can't due to fatigue or severe cytopenia. It gives me something to do and I get paid. I need to get paid to buy more fishing lures.
There are lots of details associated with this disease and treatment. I'll put up more posts to fill in the details. It really can't be all covered here at one sitting.
I've read all of the comments and appreciate every one. Keep them coming. Don't be shy about asking questions. I'll answer every question you fire my way.
To be continued...
As previously written, the bone marrow biopsy results were negative, meaning no cancer cells in my bone marrow. That's good. Selby told us about the CT scan result. It shows an image in my abdominal area that is very likely nothing but scar tissue from previous chemo treatments and tumors in that region from before. That's what they think and they are sticking to it. My recent blood work has all come back normal. So, that all adds up to the conclusion that there are no, or very, very few, cancer cells anywhere except the lump in my neck just below my jaw. That makes me an excellent candidate for radioimmunotherapy (described in an earlier post, but I'll be glad to cover that again if anyone wants me to). There are two choices, or types, of radioimmunotherapy. One is Bexxar and the other is Zevalin. And the winner is...BEXXAR, by GlaxoSmithCline Labratories!
Bexxar treatments will begin on 1/2/09. There are only two treatment days, unlike chemo that takes weeks or months. The next treatment date is 1/9/09. In the meantime, I'll have at least one more blood test. The first treatment is called the dosing treatment. I'll be given a small amount of the drug, then tested almost daily during the week until the next treatment. The purpose of dosing is to determine how quickly the drug clears out of me. Fast clearing = higher dose, slower clearing = lower dose. I'll have three special scans and more blood test. The scans are done by a machine that specifically detects and tracks traces of the drug. It's probably an old Geiger counter from the 40's that was used after nuclear bomb tests, but we'll act like it's a brand new, cutting edge technology thing-a-ma-jig just to make the doctors feel important. By 1/9/09 they will know how much of a dose to give me, that's called the therapeutic dose. It delivers what should be all of the drug that I'll need to knock out the cancer.
We should know by the end of January if it worked, or is working, just by seeing if the tumor starts shrinking. I'll have weekly blood tests for 12 weeks after to watch my blood cell counts. I will probably experience low blood counts, possibly down to dangerously low levels. My immune system will be more or less in a tailspin, so no visitors, please. I don't want to catch your nasty viruses. Blood counts should be back to normal in 2 to 4 months after treatment. Low blood count, called cytopenia, is the most common and most likely side effect. Hypothroidism is another potential side effect. I'll be given medication before the treatment to counteract that possibility. More thyroid drugs may be prescribed if needed. Fatigue will be a big deal, they said, as a result of the cytopenia. So give me a break if you see my lazy ass spread all over the sofa all day (I know that's not much of a change, but now I have an excuse). As with any cancer drug, there's a list of potential side effects about a mile long. Rather than list them all here I'll just talk about them in future posts if they appear.
I asked the doctors what I could do nutritionally to try to reduce side effects. When I suggested Scotch as a therapy, he disagreed. I think he's wrong. I will conduct my own clinical trial on that. He did say something that I liked. He said I should take mult-vitamins with iron, and to EAT LOTS OF RED MEAT! My menu will now consist of cow for breakfast, cow for lunch and cow for dinner. I'll have a t-bone with sides of cheesburger and roast beef. I'll probably start mooing.
As for work I'll continue with that until I can't due to fatigue or severe cytopenia. It gives me something to do and I get paid. I need to get paid to buy more fishing lures.
There are lots of details associated with this disease and treatment. I'll put up more posts to fill in the details. It really can't be all covered here at one sitting.
I've read all of the comments and appreciate every one. Keep them coming. Don't be shy about asking questions. I'll answer every question you fire my way.
To be continued...
Friday, December 5, 2008
How To Post a Comment, Part 2
OK, now I figured out how to allow comments without a google gmail account. Try it. I'll figure this out sooner or later.
Correction to Welcome! Post
In the Welcome post I mistyped a date. In the first sentence or two "November, 2005" should have said "November, 2008". Oops. Thanks, Teresa, for pointing that out (she loves finding things I do wrong).
What Went Wrong With the Stem Cell Transplant?
Kimmie, my Denver cousin, asked a question on the old blog site. That site doesn't work so good so I'll answer that here. Why did cancer come back after the stem cell transplant? Simple answer: My Immune System Is Stupid. It doesn't know that cancer cells are bad things. Apparently, according to Dr. Selby, one or a few cancer cells slipped past the barrage of chemo drugs, or the sack of stem cells that were harvested from me before the transplant contained a cancer cell or two. Nobody knows for sure, but Selby told me prior to the SCT that there was about a 50% chance that the NHL would be cured with that treatment. So, there was a 50% chance it could come back and I fell on the wrong side of those odds. At this time, a technical fact about NHL is that it is not curable, but responds well to treatment. There are increasing reports of cures, or at least longer remissions, as treatments improve. Anyway, I'm confident that we can keep beating this thing down and a sure cure will be discovered.
How to Post a Comment
Posting a comment is fairly easy. First, get a Google gmail account, if you don't already have one. Doing so won't generate a bunch of junk email. Then, click "comments" where you'll be taken to the comments page. In the upper right corner there is a text box where you can enter your comments, followed by a security feature, then sign in with your new (or existing) Google gmail account. Click on Publish Post and, bada bing bada boom, there's your comment. This process is different and much easier than the first blog site I tried where you had to set up your own blog site.
Welcome!
Welcome to my blog. What a name...BLOG. Sounds like a visit to the toilet. As described, I will write up my progress in the fight against NHL. In November, 2005, my oncologist suggested I visit a surgeon about a lump that had been growing slowly on my neck, just below my jaw, since about the first of this year. Two PET/CT scans showed no activity (meaning cancer cells) in that area, so the primary suspect was that the lump was a swollen gland of some kind or a cyst. Necks are full of glands and nodes, including lymph nodes. The surgeon poked around and thought the lump was a clogged salivary gland. He ordered a needle biopsy to see for sure what it is. A few days later I had the biopsy which involved jamming a little needle in my neck several times. I think the pathologist enjoys sticking a needle in peoples necks because she kept poking and stabbing. She expected to pull fluid from it, but no fluid. Instead, she got a bit of tissue and put it under the microscope. I got to look at the slide of the tissue she pulled out. She pointed out what was what, and the "what" turned out to be anything but salivary gland tissue. She called them lymphocytes. That didn't sound good. She sent the samples off to a lab for further study. The test results showed that the tissue contained lymphoma cells. That dirty bastard came back! So, another PET/CT scan and it showed activity in that area, but the needle biopsy would also cause that area to "light up" from the tissue damage. That result was not necessarily conclusive, but the biopsy analysis was pretty convincing.
Dr. Ikeguchi, my oncologist, sent me back to Dr. Selby at OU Medical Center. Dr. Selby took care of my stem cell transplant 3 years earlier. We discussed my health to date since the SCT, including the dilated cardio-myopathy (heart damage) probably caused by the prior chemo treatments. He said that the most likely treatment will be radioimmunotherapy. That involves infusion of a monoclonal antibody (Rituxan, probably) that is combined with a radioactive isotope. Bexxar and Zevalin are the two name brands of that drug. Another possibility is localized radiation at the site of the lump. Another potential treatment, and not my favorite, is another SCT, but this time using donor stem cells rather than my own like we did 3 years ago. I'll go into more detail later on the treatment when I know which way we go.
In the meantime, I had a bone marrow biopsy last Monday and a CT (not to be confused with a PET/CT, that's different) scan today. A bone marrow biopsy can best be described as a form of medieval torture where the doctor drills a hole in my hip and tries to pull my toes out through that little hole. Or, it feels like someone installing a manhole cover on your backside. Seriously, it's not pleasant. The results came back today showing no cancer cells in the marrow. That's good news! That means Dr. Selby will probably go with the radioimmunotherapy treatment, which is not as big of a drag as the alternatives. The CT scan was for the purpose of looking at an area near my left rib cage that showed slight activity in the PET scan. The odds are that the image showing up is scar tissue from prior tumors in the same general area. Selby ordered the CT to see if there might be anything else going on that he needs to be aware of. We won't know the results of the CT until Thursday 12/11 when I have my next appointment with Selby. On the same day, I have a consultation visit with Dr. Thompson, a radiation oncologist at OU Med. Ctr., to discuss what's involved with radiation treatment (including radioimmunotherapy).
There you have it. That's all I know right now. I'll post more as I get more details. Feel free to ask questions. I'll try to remember to visit this site daily and respond.
Dr. Ikeguchi, my oncologist, sent me back to Dr. Selby at OU Medical Center. Dr. Selby took care of my stem cell transplant 3 years earlier. We discussed my health to date since the SCT, including the dilated cardio-myopathy (heart damage) probably caused by the prior chemo treatments. He said that the most likely treatment will be radioimmunotherapy. That involves infusion of a monoclonal antibody (Rituxan, probably) that is combined with a radioactive isotope. Bexxar and Zevalin are the two name brands of that drug. Another possibility is localized radiation at the site of the lump. Another potential treatment, and not my favorite, is another SCT, but this time using donor stem cells rather than my own like we did 3 years ago. I'll go into more detail later on the treatment when I know which way we go.
In the meantime, I had a bone marrow biopsy last Monday and a CT (not to be confused with a PET/CT, that's different) scan today. A bone marrow biopsy can best be described as a form of medieval torture where the doctor drills a hole in my hip and tries to pull my toes out through that little hole. Or, it feels like someone installing a manhole cover on your backside. Seriously, it's not pleasant. The results came back today showing no cancer cells in the marrow. That's good news! That means Dr. Selby will probably go with the radioimmunotherapy treatment, which is not as big of a drag as the alternatives. The CT scan was for the purpose of looking at an area near my left rib cage that showed slight activity in the PET scan. The odds are that the image showing up is scar tissue from prior tumors in the same general area. Selby ordered the CT to see if there might be anything else going on that he needs to be aware of. We won't know the results of the CT until Thursday 12/11 when I have my next appointment with Selby. On the same day, I have a consultation visit with Dr. Thompson, a radiation oncologist at OU Med. Ctr., to discuss what's involved with radiation treatment (including radioimmunotherapy).
There you have it. That's all I know right now. I'll post more as I get more details. Feel free to ask questions. I'll try to remember to visit this site daily and respond.
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