Disclaimer here; I am speaking from my own experience and situation and am in no way attempting to diagnose or sway anyone to my way of thinking!
First question; Did I like City of Hope? It is very difficult to answer a question like that without being derogatory or negative. City of Hope is a wonderful facility that truly offers “hope” to many, many people that would otherwise have none. They are top notch in their field and save lives on a minute by minute basis.
When I said that City of Hope was literally a “city”; I meant it. After revisiting my thoughts about City of Hope, it may be possible that; "I am just a small town girl…living in a looonely wo-orld"….. Just kidding there; and that I found the whole experience overwhelming. Everything there is in “mass” it is a sea of sick people all hoping that the odds are with them, as opposed to against them. The nitty- gritty reality is that some of us will live and some of us will die. We all put up the best fight that we have in us and pray and cheer on all of the others like us. Cancer sucks; it doesn’t matter what kind you have and it doesn’t matter who you are, it sucks for everyone. We all have a story and the plot changes once we are diagnosed. It not only changes for us, but for every one that we know and love. That being said, I shall hold all judgment for now, and realize that while the City of Hope may not be a perfect fit for me, it might be. How’s that for being diplomatic?
As far as my new doctor, I will see her again before making any final decisions. She seemed as though she was interested in my case and health and answered most of my questions, yet not to the degree of my expectations. And yes, Julia I am afraid that “barraged” her with too many of them! She did say that they could knock me out for my next bone marrow biopsy, and said that as long as the meds were working that I would not need a bone marrow transplant. She did not really delve into the “if” the meds stopped working scenario and is just going with the “they are working now” attitude that I find a bit annoying. So no, in my opinion it was not answered in a way that I am yet comfortable with. I just don’t want lose my window of opportunity if there is such a thing and if that makes any sense.
As far as the smiling upbeat atmosphere you see in commercials, I witnessed more of a “we’ve got work to do, let’s get it done” atmosphere. As far as what I shall do if an issue arises, it would depend upon whether I am at home or in the desert visiting my family. Right now the City of Hope is my primary facility, with Dr. Camacho as a backup!
Next question: My leukemia is currently in the chronic phase. My current doctor said that I was diagnosed in the chronic phase, but my pathology report is unclear to me. In one sentence it states that I had 51% blast cells, another sentence states that I had 41% blast cells and the third reference states that I had less than 2% blast cells. A bit contradictory if you ask me! I will continue on my journey to confirm just what stage I was in when diagnosed, as this can alter my treatment to some degree. Was I acute or was I chronic; who knows?
As far as to the “why” they started me on Dasatinib (Sprycel) as opposed to Imatinib (Gleevec) or Nilotinib (Tasigna), I am not really sure. I do know that my insurance does not pay for ANY medications unless I am hospitalized. I also know that Gleevec is the least expensive of the three drugs. Tasigna is next in line. My original doctor claims that Dasatinib (Sprycel) has the least amount of side effects and is the most easily tolerated. Maybe he just was sparing all of the doctors’ following him from my constant whining from the Gleevec side effects. I also know that Sprycel has a patient assistant program called Destination Access that is currently paying for my drugs. It may be as simple as that; I do not know if the other drugs have the same type of patient assistance programs.
What I don’t know is if I am screwed by starting at the top of the list; or blessed. My side effects are minimal and since lowering my dosage, I have more energy. But I wonder if I have eliminated my ability to go from one drug to another if my cells begin to become intolerant to the Sprycel. I know that Gleevec patients can often go for many, many years before switching to Tasigna and then many more years before switching to Sprycel. I wonder if I have been taken out of that game or if I even needed to play it.
The doctors’ response to that question is that Sprycel seems to reach a cellular remission quickly; and the faster the better. They do not say that the others do not do the same thing. Soooo, I really do not know the true answer to that question, but I do know that I seem to be experiencing fewer side effects than other people on other drugs. I may have just been cut a break there, I do not know; but I’ll take it!
Butterfly kisses and butterfly needles; Thanks to all of you that are reading my blog and cheering me on my journey and a special shout out for Rhonda, who recently, graciously and strongly looked breast cancer in the eye and said, “I don’t think so!” Rhonda, you are a survivor and an inspiration!
OK! I am in! 3rd try, patience paid off! I will make "this" entry brief in case it gets "zappo'ed" again! YAY that if you have to have another bone marrow tap they will put you OUT! Tell them afterward "leave me loopy" so you can just sleep that day away! Perhaps since the Dr. did not really respond to a bone marrow transplant it's because that decision "now" may be jumping the gun - so to speak... Your spirit, attitude never ending enthusiasm will "rub off" on those blood cells with a little help from Prayers from your friends, and a proper dosage of your medication! HURRAY to your friend Rhonda "I don't think so" is a wonderful answer to cancer! I reached my 5 year mark in November of NO BREAST CANCER... Let's make it a trio of "I BEAT YOU" !!! Your blog is inspirational, and helpful to anyone who reads it, patient, caretaker, parent or friend... Thank you Michele my Belle! Love to you, JuliaReplyDelete
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