Hi Everyone. This is my first time posting...anywhere...ever. Last Feb. I had an appointment to see my rheumatologist. I had been having rheumatological problems , among other things, for about one year. My doc. drew blood and later that evening he called to tell me I had to go to the emergency room, I was in renal failure. After one week in the hospital I was sent to a specialist and was dx with a rare autoimmune disease called Wegeners. I began treatment for the Wegeners, infusions which I have to have once every 4 months for the rest of my life. Thankfully, I began to feel better, my kidney function started to improve. In May I noticed I was getting black and blue marks so I went to see my specialist. He drew blood and called me the next day, my white blood count was 81k. He sent me to the leukemia clinic at a nearby hospital, they did a BMB and 5 days later I got the news- I have CML. My PCR at dx was 44%, at 3 mo. 70%, 4mo. 54% and 5 mo. 55%. I have been on Gleevec and about to switch to Tasigna. I am totally overwhelmed- 2 major illnesses within 3 mo. I'm finding it very hard to cope with having both of these conditions.
I have been reading the postings on this discussion board for the last two months, that is, when my very unreliable computer is working. I am amazed at what a kind and compassionate group of people are in this community. I have been so envious of all the support everyone gets here so I finally decided to post. Although I am grateful that there is medicine for both these conditions it's scary to think I have to take so much strong medicine for the rest of my life. I will be switching to the Tasigna Thursday and am nervous about starting it. Thanks in advance for any support anyone might be able to offer.