In December… or early January, my liver enzyme numbers ratcheted up quickly. Because of that, my doctor chose to take me off imatinib (Gleevec) to determine if the CML drug caused my liver numbers to go up. We’re not sure if it did… but January and a cold from the kids started two months of feeling ill and getting worse.
As with many things medical, no one knows exactly what’s wrong… a liver biopsy showed stage 4 liver cirrhosis… but the lab work didn’t really show why… and then just like that, my liver enzyme numbers started to return to normal, I started to feel a whole lot better. Who is to say.
I learned a lot… I didn’t realize that you can have cirrhosis of the liver for a long time and not know and never feel “bad” from it until it’s bad. I experienced jaundice. I even “got” to stay in the hospital for a night. I’ve had multiple ultrasounds, a liver biopsy, an upper abdominal endoscopy… and I’m pretty sure we’ve blown through our max out of pocket for the year.
Feeling better. Choosing not to be concerned about it. I’ll be going back to see the hepatologist next month, but mainly for a checkup.
I also went back to the oncologist today… since it’s been 4.5 months since I’ve been on my leukemia meds, he wants to start me again after he gets results back this next week on my blood tests.
Dr. B plans to put me on dasatinib (Sprycel), another daily pill therapy similar to the Gleevec. There’s a much smaller chance of it affecting my liver so we hopefully won’t see that, but as with any of these medication, a host of side effects come with them.
It’s funny how good I feel right now, knowing that the leukemia is ramping back up and that when I go back on the drug, I won’t feel great but the leukemia will hopefully be kept at bay. I’ll have an EKG again this next week and then back to the oncologist for regular checkups again.
Dr B. also invited me (gave me a pamphlet) to the Rocky Mountain Blood Cancer Conference tomorrow; he’s speaking and even though he’s presenting on Lymphoma and not leukemia, he did say that the doctor speaking on CML after him is a great doctor in cancer research. Will have to see if that pans out tomorrow.
Thanks to everyone for the well wishes, cards, gift, FB messages, emails, etc. I am truly blessed to know you and be kept in your good thoughts and care. Thank you also for keeping Adam and the kids in your thoughts as well; for someone who has the disease/cancer, especially something that’s chronic, you learn to live with it and some days you really don’t even think about it being there at all, especially when it’s not seemingly impacting your immediate life… but there are those around you who care and worry and I thank you for enveloping them how I cannot.