Thursday, November 24, 2011

The Dreaded Philadelphia Chromosome

Until recently I had never heard the term “Philadelphia chromosome.” It wasn't until I was diagnosed with chronic myelogenous leukemia, earlier this year, that it became a part of my vocabulary; it has now taken temporary control of my life. This condition is not something that I was born with or something that I can, or will pass down to my children. It is not contagious; so you needn't run when you see me coming or wear garlic around your neck. It is my understanding that CML is just kind of a fluke. Lucky me!

There is some evidence that people treated with a high dose of radiation may have a small increase in risk, but most people treated with radiation do not develop CML and most people with CML were not exposed to high-dose radiation. So, go figure; sounds like they really just don’t know the cause.

Normal cells have pairs of chromosomes that are numbered 1 to 22, and a pair of sex chromosomes; XX for females and XY for males. Chromosomes are structures in the cells that contain genes. The genes give instruction to the cells.  This is “my” understanding of what the “Philadelphia chromosome” is; for some reason unbeknownst to all, a small piece of chromosome 22 breaks off and saunters its’ way over to chromosome 9. It then decides that it would like to stay there and hang out with chromosome 9. So it attaches itself there and sends a piece of chromosome 9 on over to keep chromosome 22 company.  
When Joe and I are teaching dance classes he is constantly saying “rotate” to the students. I told him that it must be his fault that I now have leukemia, because he said rotate just one too many times. I think that my chromosomes must have heard him and just decided to rotate!
The break on chromosome 9 involves a gene called Abl and the break on chromosome 22 involves a gene called Bcr. The Bcr and Abl genes combine to make the CML causing gene called the Bcr-Abl gene. There doesn’t seem to be any rhyme or reason as to why this occurs; it just does. This Bcr-Abl gene produces a dysfunctional protein called “BCR-ABL tyrosine kinase”; this leads to the abnormal regulation of cell growth and survival and is responsible for CML. Think of it as a faucet that is constantly in the on position. It is on and making immature white cells that are crowding out the good white cells as well as the red cells and platelets.

Sunday, November 20, 2011

Throwing a last-minute Halloween party

Guest post written by Chandra Morrison

I'm not really one to plan out things beforehand. I've never really been that way. But it's OK with me. I prefer it that way. It seems like when I do try to plan things ahead of time, it just doesn't work out as well in the end.

I threw a Halloween party on Sunday afternoon, so of course Friday night I was online with my clear internet looking up some recipes and other things that I could do for the Halloween party.

It seems like it's so much more difficult to throw a Halloween party for kids than it is for adults. With adults, you can just give them cocktails to entertain them. With kids, you have to give them all kinds of activities and crafts to do. I was able to throw together some crafts at the last minute and the kids had a lot of fun! Luckily, I also had an old Halloween costume of my own that I found in the attic and washed that was perfect for the party. A Ghostbusters costume never truly goes out of style.

Friday, November 11, 2011

My Third PCR (Polymerase Chain Reaction Test)

My Daughter and four of five grand-kids!

What I have come to understand, is that the best way to measure the burden of disease (leukemia) in your body is to monitor Bcr-Abl RNA or DNA in the blood and bone marrow. The goal is for the Bcr-Abl to eventually become undetectable.

It seems to be that a person that starts their treatment on Sprycel (Dasatinib) tends to reach these milestones, a bit quicker than if they were to begin their treatment with Gleevec (Imatinib). My first PCR results, were five months ago, in May 2011, and the reading was 5.9 x 10-2. My last results are in and I have reached 3.99 x 10-4. This is a significant improvement and I have reached it in record time. Next test will be in December. I am hoping for a terrific Christmas surprise of my numbers coming in in the negative category!
Thanks for the continued support and prayers!

Friday, November 4, 2011

Sprycel (Dasatinib) Financial Help is Available

Recently I had a conversation with fellow CML’er (chronic myelogenous leukemia) regarding the medications that are readily available to treat chronic myelogenous leukemia. Currently there are three of them; Gleevec (Imatinib), which was the very first medication, Tasigna (Nilotinib) which is the second generation and Sprycel (Dasatinib) the third generation drug. Of course all of these medications come with a very high price tag; I am talking thousands of dollars, each and every month, for the rest of our lives. I am not sure of the cost of Gleevec and Tasigna, as I am currently taking Sprycel, but I do know that the uninsured price tag of Sprycel is $15,986 a month. I believe that Gleevec is in the $5,000 range and Tasigna around $8,000 per month.

Of course this all depends upon your dosage and your insurance, but whatever the case, it is pretty darn pricey to stay alive! I am not entirely certain how the treatment for an individual is reached, whether some doctors just always start their patients on Gleevec and gradually make their way through the other drugs as needed, or if it’s based upon the patient’s insurance and which drug they cover. I know that my doctor discussed the side effects, the availability, and way in which each drug must be ingested, with me, in addition to the amount of time that it takes for each drug to “work” or just how quickly a certain drug appears to reach certain phases in this disease.

I know that every person responds and reacts differently to each and every drug, and I also know that statistically speaking, it seems as though with each new generation of these TKI’s (tyrosine kinase inhibitor) there is improvement in one way or another. Sprycel seems to have the fewest side effects across the board, and seems to result in a quicker molecular response. I am sure that they are currently working on a “newer, bigger and badder” drug that will someday be available to those of us that will need it.

For me, I considered my options and chose to go with the newest drug, believing that just like cell phone and computers, as soon as you purchase one, the next best thing will be available the very next day. I just figured that by being the third generation, that some of the bugs, mostly being side effects, which affect my quality of life, had been improved upon. I am not a doctor, but I did do my research and feel as though I made the best decision “for me.” I encourage you all to do the same.

Since my insurance does not cover any prescriptions whatsoever, I was very fortunate that my doctor was very well educated in this department and told me not to worry. He claimed that he had never had a patient unable to get their medication. He gave me a slip of paper and arranged for my first week of Sprycel to be covered 100%, while he did the paperwork to have me covered by Destination Access, which would continue to cover my medication; 100%. Of course there are guidelines, which luckily I fit into. The major guidelines are that your insurance does not cover your prescription and that you make less than $75,000 per year. For full requirements visit the Sprycel Destination Access Program and you can view the Sprycel Prior Authorization Process. I am continually surprised by the doctor's and patients that do not know this great program exists.

My Sprycel has been covered by Bristol-Myers Squibb, through Destination Access for the past eight months. I cannot express my gratitude enough to them for giving me the gift of life. Thank you from the bottom of my heart; which is able to continue to pump my Sprycel treated blood!

Bricks for the Brave!!