After a healthy, no symptom, routine blood test on Jan. 22 my white blood cell count was at 90000. After a consult with a hematologist/oncologist, two more CBC's and a bone marrow biopsy to confirm, I was definitively diagnosed with CML on March 3. Thanks for Trey's insight on this forum I was armed with an argument against taking Hydroxyuea, but it wasn't necessary. My doctor put me on Gleevec 400 straight away. After more than a week of wrangling between the doc, the insurance company, and Walgreen's Specialty Pharmacy, I now have it in hand - well, some of it. They still only sent a 16 day supply instead of 30 after all the argument and approval. I guess they think they know more than the doctor. Nothing more frustrating than being told you will die without this drug and then the pharm arguing about it. How ironic that you can walk into a pharmacy and get a prescription filled for Oxycodone in 5 minutes.
Instructions from my doc - take it for a week and then come in for another blood count. Whatever the outcome you will be on this drug "for the rest of your life". A concept I have not completely accepted yet.
No mention of side effects or what might constitute and emergency reaction. No nutritional guidance, what to eat, or what to avoid. When I brought up vitamins or alkaline diets it was "pooh-poohed" as "not proven to have any effect". I have always tried to be my own health advocate. I am hoping that starting out feeling perfectly healthy will serve me well. After not taking so much as an aspirin for a headache, the thought of being on any drug forever is just so daunting. I have a wonderful local health food store with on-staff nutritionists who are willing to work with me - a great stress vitamin, and milk thistle tea for upset stomach if I need it. At the risk of sounding like a whiner, medical experience be damned. I don't think any doctor can fully appreciate the trauma of going through this unless they have experienced it themselves. That is why I am depending on you guys to help with some of the obstacles I may face on this journey.
Thanks for letting me vent today. I truly feel like this IS the first day of the rest of my life.
So, here goes. Down the hatch...