Thursday, May 26, 2011

19 Days on 100mg of Sprycel; Guess what!

Crying because Mom took the Hot Tamales away!

Well, I had a blood draw a few days ago and I was still hanging at 4,600 white blood cells, 3,560 red cells and platelets at 188,000. I was glad, but a bit surprised as I had been feeling crummy for about a week. I suppose that I was anticipating that they had gone down. I have one more dance practice before the competition this weekend and I really want to feel good.

Fast forward three days:

Today I met with my doctor again. Surprise, surprise! My white cells have dipped to 2,600; reds and platelets are about the same. I just knew that I wasn’t feeling quite right! It’s funny how the drop in white cells affects me; I become more tired and just have an overall unwell feeling. I explain to the doctor that I am going to a dance event regardless; and that I plan on competing. She shakes her head and smiles and then says, “Well, we had better give you another shot of Neupogen (Filgrastim).”  The last time that I had a Neupogen injection I felt quite a bit better within two days. Two days from now I will be on the competition floor. I am keeping my fingers crossed!

On the upside, I also met with my doctor’s assistant. She was actually able to give me a relatively convincing reason as to “why” my doctor wants to keep me on 100 mg of Sprycel  vs 70 mg. She explained that 100 mg seems to be the dosage that not only reduces the Philadelphia chromosomes; it is also strong enough of a dose to prevent the chromosomes from figuring out a way around the drug. In other words, the bad cells are smart little suckers and they can often adapt to their environment and manage to reproduce despite the inhibitor. That is one of the risks of this oral treatment; the possibility of becoming resistant to it.

I guess that I now better understand that the goal is not only to reduce the white cells in my blood; but to eradicate the underlying reason that they are there as well; I can accept my prescribed dosage. The ultimate goal is to have no Philadelphia chromosomes in the bone marrow; thus resulting in a normal white cell count in my blood. Of course, my question to her was, “If my blood keeps dropping so low on the 100 mg dose, does this mean that it is also preventing me from producing healthy white cells, as well?” Her answer, “Good question, I guess that I will have to find out that answer and get back to you.”

So, once again I am a bit confused. I think that I will be seeking a third opinion shortly.crossed!

3 comments:

  1. Read more about CML visit : http://dentistryandmedicine.blogspot.com/2011/05/chronic-myeloid-leukaemia.html

    ReplyDelete
  2. Remarkable how so often the Asst. can explain things more clearly! I do not blame you for wanting a zillion opinions of that's what it takes Michele! I must wonder if a "Dr." would have been so honest though about truly not knowing the correct answer to your VERY LEGITIMATE question! You need those "good" healthy white cells to fight off - anything and everything! I - am glad to understand "why" they wanted you back at 100 when you seemed to feel better at 70, I find myself a tad grateful to that assistant.. The fact that our bodies adapt is a wonderful thing - in most cases, NOT in this one... Hang in there, and - keep dancing... Love you, Julia

    ReplyDelete
  3. Even though we are strangers, I do understand what all you are going through. My son was diagosed on April 1st, 2011, (not a very good April Fools Day!) This disease is made up of ups, downs, and periods of anxity. We live in the Houston area and my son is lucky enough to have been accepted to M D Anderson. He is also on a drug study which saves about $80,000 per year. I wish you God's blessings and that He holds you and your family in the palm of His hand. Your blog provided a well written description of the disease - thank you!

    ReplyDelete

Bricks for the Brave!!