I was recently diagnosed with CML in January. I am 28 with 3 young children. I am scared aBnd at time afraid to express my feeling with my family because I don't want to scare them. I am currently in Phase 1. I am on Gleevec, Hydrea, and have had 2 infusions of Cytarabine, When I am one Hydrea my counts bottom out and I go into the hospital, When I am only on Gleevec my counts go to high and i have to go back to the hospital to bring them dawn. I was diagnosed on 1/16/2013, and was in he hospital in 9 days home a week then back for 5 days, home for a few weeks and back now and probably will go home today but how long will it be before I am back. We think we aren't responding to the current treatment and probably will be changing it hopefully outpatiently. They are also watching me closely thinking I might be trying to develop a for of Acute Leukemia or progressing to phase2 the acceleration phase. I just need help understanding this and somewhere to express my feeling. Also any information you may have to pass along I will greatly appreciate it.
I was previously asked more about my counts. Here is a quick run down:
1) On January 16th 2013 I went into the Er thinking I had the flu. My husband and my middle son both had the flu. Well first the flu test came in it was negative. Then the chest x-ray it was clear. i was then told that the doctor would be in in a few minutes to talk to me. When she came in she told me that I was being admitted due to my white blood cell count has very high and the oncologist and hematologist would be in shortly to talk to me. Of course I lost it but regained my composure enough to call my husband and talk to the doctors. My WBC was 298,000. I was very anemic and very low potassium. I was admitted straight to the hospital and was tols it was more then likely CML and had a bone marrow biopsy. Over the next 9 days I was hospitalized to bring my counts down. In the hospital I received my first IV Cytarabine, and started on Gleevec, and Hydrea.
2) On Superbowl Sunday I was admitted back to the hospital for an infected tooth, and my WBC was 1, My ANC was 0, My blood was very anemic again. I was told everything had bottomed out due to the Hydrea. So they stopped all of the meds and put me on just antibiotics to heal the infection, and let my body recover. I was admitted 5 days that time, sent home with a 1.5 WBC and 200 ANC. I was told by nurses that I should not have gone. But the doctor sent me home anyways. He was not my original doctor. But My counts did recover and on the 12th I was gave the go ahead to pull my tooth and I did on the 14th. Then I redid my blood work on the 19th. My WBC was 33. But everything else looked great. So we started only the Gleevec back.
3) On the 28th I went back to the doctor to do a checkup and my count was 125. So the doctor is thinking that I am possibly showing a resistance to the Gleevec but doesn't want to give up on it just yet. He admitted me on the 1st to get a 2nd dose of Cytarabine and restart the Hydrea and continue the Gleevec. As of right now if I bottom out or don't respond the way they want me too I will probably be changing medicine. I don't know to which one yet we will discuss that at my appointment next week. Also to be discussed will be the possibility of taking out my spleen, maybe getting a port, and if I am trying to develop AML too or move to Phase 2.
Please feel free to ask any questions that you may have. I am very open to options and advice too.