Hey Brother & Sister Survivors:
First of all. . . I want to say "WELCOME Newbies"!!! We are a group that no one wants to be a member of. . . but you are at the right place at the right time for your survival. I have 15 fatal/terminal/chronic diseases. . . all of which I call CHRONIC ILLNESSES. After being diagnosed in 2003 and given 2 months to live with 800,000+ per 1,000,000; I truly know that "Man points. . . GOD appoints".
As "Cheerleader" for the Group and "queen of the side effects". . . I have been there/done that. No matter the side effect "this too shall pass". I cannot stress enough though. . . that if it doesn't seem right, it isn't. Run, do not walk. . . run to your nearest ER, Oncologist, or PCP!!! I ignored 'chest pains' thinking. . . 'it's a side effect of the 'gold' as I call Gleevec'; and now I have 2 stents and Coronary Artery Disease. I shudder to think about the other times when I ignored the chest pains, I could have been dead. "Every day is a gift from God".
Newbies . . . I have my PCP, my Oncologist, my 3 Ortho Surgeons, my Cardiologist, my Pulmonary Specialist, my Optometrist, my ENT Doctor, and I am adding a Vascular Specialist to co-ordinate my care. Your PCP cannot take care of our 'bug' as I call CML; unless you are in a remote community and he's consulting with an Oncologist. Example: my PCP diagnosed an Ortho problem in the early '90's as Bursitis, gave me injections that only added to my Osteonecrosis. After my stents were implanted, I had chest pains and the doctor on call put me on the meds 'across the board' for CAD and due to our bug; 2 of the meds were not to be given to me. Remember, you are not a statistic, you are an individual. I don't know about anyone else, but I personally will not take any of the NSAIDS; ie. Motrin, Advil, Tylenol, etc., as they all have that ingredient that plays havoc on my liver and ulcer. Our gold is the only med that I will take that's processed in my liver. Regarding joint pain
I have 7 Chronic Orthopedic Diseases, need and cannot have Orthopedic surgery's. I have been placed in Pain Management, however, your pain is related to our gold; and it shall subside.
After diagnosis, I armed myself 'to fight the battle of my life, for my life'. I didn't find the Group until after I became 'negative'; I cannot stress to you enough that you don't hesitate to use this group as a sounding board. After all, we've all been/there. . . done/that. Also, 'if something doesn't seem right, it isn't" and run to the specialist for the specific health issue.
Regarding BMTs, I am not a candidate, if I were; No Way! I don't like the odds, over 30% die in the 1st three months, and over 50% in the first year.The BMT doctors are in need of statistics, I don't consider it a 'CURE' with so many dead or living the Gleevec life again, and I refuse to become a statistic. My ex's grandmother told me over 20 years ago, "the operation was a success, but the patient died". We have our gold, the trials, the vaccine, and research on the horizon. If there's a 'good' time' to have our bug, it's now!
After given my mortality rate in 2003, we know that we have brother & sister survivors of the 1st clinical trials of our gold; therefore we have 5, 10, 15 years. I told my children have I have those years +20, 25 years of survivorship. I like these odds! (Smile). Don't hesitate to email me privately, or post any and all concerns to the group. We are here for you!!!
Take care, and as always, brother & sister survivors. . . You are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!
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