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.

Wednesday, November 23, 2011

Cleaning for the Holidays!

So, the big fat question is this: “When do I clean my carpets?” should it be before the holidays so that they look really great or should I wait until afterwards, when all of the people that will be trekking in and out are done spilling things? When I check out the carpet cleaning tips on The Steam Team’s website,  I really just want to clean them before and after the holidays!

The section that talks about how we only vacuum up a fraction of the dust and dirt in out carpets, leaving behind pet dander and dust mites, I get a bit grossed out. I am thinking that I need to have what little bit of carpet that I do have professionally cleaned on a more regular basis. Carpet and furniture cleaning Austin, cleans everything that you can think of: marble, granite, air ducts, cars, boats and leather. You have and they can clean it. Maybe we should consider building our houses more like a hospital, lots of hard surfaces that can just be hosed down…..doesn’t sound very homey, so I guess I shall just have to continue to be clean freak and use the professionals for the big stuff!

Thanks for the Great Care!

With tomorrow being Thanksgiving Day I have much to be thankful for; most of all, it is to be alive. It has been nine months since I was diagnosed with leukemia and I am still alive, kicking and dancing. Looking back to the day that I was diagnosed, this was all uncertain, since we didn’t know what type of leukemia that I had, fortunately for me, I have chronic myelogenous leukemia, which the doctors are now able to treat, monitor and hopefully keep at bay for many years.

While I was hospitalized, I was very lucky to have pretty decent care. All but one of my nurses were “good”, but there was one in particular that was great! I always knew when she was on my floor, because she always wore a different uniform then the other nurses. Hers was always bright and cheery and I knew that when she was there, that my night would be much better. The greatest thing that she did for me was to help me out late at night. For whatever reason, leukemia makes you sweat profusely at night, literally soaking not only your clothing, but your entire bed. On the nights that she wasn’t there, the only thing that I could do to help myself was to change my jammies, but when she was there, she would help me to change my entire bed, which was awesome, because being wet is no fun and when the bed is wet all you are is damp and freezing cold to boot!

She was the angel nurse, so I wanted to send her something this Thanksgiving in a way to say Thank you to her. What I thought that she could use, and hopefully remember someone that greatly appreciated her, was a beautiful beaded lanyard from  that would hold her ID. They have the most awesome nursing scrubs, hats and lanyards on that site; hopefully I am making a good choice and she will find the lanyard useful!

Teen Drug Addiction

As Thanksgiving approaches, I am thankful that my friend's son will be home to share it with her.

Drug addiction is a disease that can take over someone’s life at any moment. Often this addiction begins at a young age and can wreak havoc on not only the drug addicted person, but their family as well. The causes and effects of a drug addicted teen often are very different than those of and adult. One of my very dear friend’s, teenage son, has been battling to get his life back for the past two years. He has been unable to kick his addiction on his own, so he has had to enter a drug abuse rehab on many occasions.

The Birmingham rehab center seems to have been able to help him to get back on track. They were able to detox him, and set him up in a system that fulfilled his needs; one of them was helping him to earn his GED. Their treatment is designed to help teens and their families begin to mend the damage that the drug addiction has caused. It is structured, yet monitored, and teens are challenged and stimulated in ways to help them to regain their self-esteem and help them to become responsible, productive human beings, while enjoying their lives in a clean and healthy way. Drug addicted teen’s need much guidance and support and they will need continued long term care and monitoring in order to remain strong and sober.

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!!