I Can Do Anything Better Than You Can!

I'm happy I came across this:

"Dasatinib, administered once daily, as compared with imatinib, administered once daily, induced significantly higher and faster rates of complete cytogenetic response and major molecular response.

Since achieving complete cytogenetic response within 12 months has been associated with better long-term, progression-free survival, dasatinib may improve the long-term outcomes among patients with newly diagnosed chronic-phase CML. (ClinicalTrials.gov number, NCT00481247)"

Why am I happy?

Dasatinib is the chemo drug I am taking for my leukemia. When they mention "complete cytogenetic response and major molecular response" it means that the way out of line bone marrow and blood is getting back to normal. It doesn't mean a cure, but it means it is controlled better. That's the easiest way to explain it at the moment.

The other one mentioned above, Imatinib is an older chemo drug that is sort of the great grandpa of the one I am taking. It used to be the best one around. But according to the above, it looks like my chemo drug is so much better!

Dasatinib is also known as Sprycel.

Imatinib is also known as Gleevec

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Note: The art is my own altered photo. It is called Chemo Fire

For Better and Worse

I am feeling better! I got my Guardian Angel to come take care of me that night I was so sick. He drove 57 miles to get here after working a full day. He took care of my every need, by reading the notes I wrote. If I spoke I would cough incessantly! He changed the bed, cleaned the bathroom, held the trash can as I got sick. Oh, I felt so much better after that episode! While I finally lay there in comfort, he did the laundry until 2 am. Then got up at 6 to go back to work again. I couldn't ask for more!

The next day, still sick, but not as bad. Emailed my doctor. His nurse, the one I like, called me to ask questions and let me know doctor had ordered cough medicine with codeine in it to help quell the cough. A neighbor who had seen my posting on facebook volunteered to pick up my prescription. Bless her!

The next day after that I was well enough to have my housekeeper take me to the store to pick up a last minute Christmas gift. I didn't cough once the hour and a half we were gone!. Oddly, by evening the coughing was back again. But, the nausea has not returned.

The coughing does a number on my neck, upper spine and rib cage though. I even heard my neck crack with coughing. Every muscle is sore. I'm using my super duper official medically therapeutic heating pad to help with all that. I don't know what I would do without it. Originally it was ordered for me years ago for arthritis bone pain. I is so large I goes from my shoulders all the way down my back to buttocks. I learned about it from my physical therapist who used it in her practice. Because of the special cover, it produces moist heat. There is a safety feature, too. You have to hold the switch into the on position yourself. That way you can't fall asleep with it on, and burn your skin or over cook your joints.

It heats up real fast and quite high, so, believe me, you don't need to hold onto the switch for very long at all. The heat takes a while to dissipate too. I love it! The only drawback is the price. I don't know if you can get it ordered by your doctor as a prescription, and insurance pay for it. Though, I didn't mind paying for it myself. It has outlasted any small size common plastic heating pad I have ever had by years! Here's the link, if you want to take a look at the site where you can order it. Then click on "Moist Heat Therapy" I like mine the best though. It's model #055, size 14" by 27".

I hope I'm not sounding too whiney and hypochondriacal. But, this is, after all, my journey, the good, bad and ugly. Having the Leukemia may seem to be what it's all about, but it is more than that. The Leukemia and the Chemo will not affect every aspect of my health. And because I already had several underlying conditions before diagnosis, then they are affected at well. I still have so much to learn in how to get things managed and back into balance.

So, the title of this posting is for Better and Worse. I've written about the better. Now for the worse. Or what I think may be the worse.

In January of 2009 I started taking a prescription drug for one of my autoimmune conditions. It is called Cellcept. It is usually what transplant patients take in order to keep their bodies from rejecting their donated kidneys, livers, lungs or whatever. When I first looked at the possible adverse affects of Cellcept I didn't think they were too bad, and was willing to take it even though one of the remote possibilities was Lymphoma. I was desperate and so tired of the battle with my autoimmune disease which had me in it's grip for five years before. I took the Cellcept for 22 months before I needed to stop taking it. Cellcept lowers the immune system and therefore you are more susceptible to infection. I came down with a bad cold and bronchitis at the time. The doctor told me to stop taking it otherwise I would end up with Pneumonia.

So ten months after stopping the Cellcept is when I was diagnosed with the Leukemia. Is there a connection? I don't know for sure. Lymphoma was an expected possibility.

It had not occurred to me until today that maybe there is a connection between Cellcept and Leukemia. To be fair. I don't know that for sure. I hope the company will call me back so we can discuss it.

So let's get back to something better now. How about this picture? Not taken by me, by the way. But, I thought it's nice for this time of year. I've got it on my computer as a desktop background.

Haunted Awakener

I find myself within each day swinging from blessed ignorance (my brain has turned itself off), to horror.

I puzzled over the dilemma of being controlled by my emotional instability and how I could live better with the situation.

There's always a choice, I say. Well, maybe not always, but an attempt must be made in order to try to get through things instead of falling through the cracks and losing it entirely. Been there done that too many times already. Psych meds help, but I also have to help myself. I think it's called Rational Emotive Therapy. It's quite helpful.

I had a friend once who had a series of bad dreams that haunted her daily life. She tried everything to stop the problem, from counseling to sleeping pills. But, it wasn't until she realized that the dreams bothered her most after indulging in one of her favorite activities. Or should I say, inactivity. She enjoyed watching horror movies.

Sometimes we don't put two and two together until long after we have failed the math test.

I realize my subconcious is wrangling with the Leukemia diagnosis, of course. My concious mind wants facts, facts, facts. I keep researching, learning what all the medical terminology definitions are, studying like a pre-med student for the final exams. I want satisfaction for my curiosity. I must know the adversary!

Still, the adversary is frightening. I can't turn my back on it. I research late in the evening after I have done all the rest of my daily business.

I sleep okay. It's just waking up to the underlying emotions that gets me down. One might say, "Stop researching". That would make me so anxious, I would be in worse emotional condition.

I have come to the conclusion (Drum Roll) that researching Leukemia information late at night is what's causing the emotional wake up periods.

DUH!

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Photo Art, "Haunted Dreamer" by me, Elizabeth Munroz

`Cause I live and breathe this Philadelphia freedom

I have been learning about this so I could understand the science behind my diagnosis. I was piecing it together based upon the blood tests that were done and looking up each component. I was getting the puzzle pieces but the whole puzzle was not coming together clearly. This has consolidated a small part of it and I find it simple and well written. Of course, there is more to learn.

While driving in the car last night, it just hit me. "I have Leukemia. I don't feel like I have Leukemia."

What was I thinking? What did I think it should feel like? I realize that some people don't get diagnosed until their disease is highly advanced and they have a lot of horrible symptoms. I guess it is a good thing I have so many other diagnoses going on all the time that doctor's visits and blood tests are a commonality in my life. Therefore, early diagnosis. It's no wonder I don't feel like I have Leukemia. I feel sick all the time anyway. How would I notice any difference?

Though, in hindsight I can see how some of my symptoms have increased over the last two years. Now, it seems to fit that these increased symptoms can be contributed to the CML. The one symptom that was driving me nuts, and really didn't have a correlation was the NIGHT SWEATS!!

This information is borrowed from another site. The link is posted below. I don't think I agree with the last statement as I have read elsewhere some information about possible causes, exposure to benzene is one of them. I most certainly have had extreme exposure due to swimming in the chemicals of Love Canal, which floated down the Niagara River in my own backyard for the first 14 years of my life. It is also thought to be a part of the reason that I had chondrosarcoma bone cancer in my twenties, as well. Damn! it gets complicated.

What Causes Chronic Myeloid Leukemia (CML)?

• To understand what causes most cases of CML, you need to know about your cells. Every cell in your body has the same DNA—the genetic material you inherited from your parents. DNA makes up your chromosomes, and contains genes that control the activity of the cell
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• Each time a cell divides, its DNA is copied into the new cells. Errors can occur during the duplication that affect the genes and may lead to the creation of cancer cells instead of normal cells
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• Chronic myeloid leukemia (CML) occurs when pieces of two different chromosomes break off and attach to each other

• The new chromosome is called the Philadelphia-positive chromosome or Ph+ chromosome
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• The Philadelphia-positive (Ph+) chromosome contains an abnormal gene called the bcr-abl gene
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• This gene produces the BCR-ABL protein, which causes your body to make too many abnormal white blood cells
• Ordinarily, the body is able to tightly control the number of new white blood cells
• In chronic myeloid leukemia (CML), BCR-ABL acts like a switch stuck in the "on" position, signaling white blood cells to continuously grow
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• There is no known reason for the genetic changes that cause chronic myeloid leukemia (CML)

This information comes from  http://www.mycmlcare.com/