If anyone in the medical field, like an oncologist had ventured to tell me over 14 years ago that I would still be here in spite of having CML, I would have had serious doubts about that doctor's ability to be truthful with his patients.
It's difficult to explain what leukemia is to someone who doesn't have it and has no background knowledge of anyone who does, or who has never met a CML patient. In all probability, they never met one. I have met several patients who never met another CML patient until they met me.
I have been in five trials, beginning with all trans retinoic acid (a high concentration of Vitamin A) and Hydrea (which controls high white counts). Included was allopurinol to keep from getting gout from the Hydrea. To make a long story short, I then went to Inteferon and HHT, then to Gleevec, then to Sprycel and lastly to SKI 606. I was not keen on getting this drug, as I hadn't heard of anyone who had achieved any remission. My doctor believed in it, however and even though I was on a sub-optimal dose because of severe side effects, he made me stay the course.
Even though we have billions of cells, we never know where the CML cells are hiding (quiescent cells), so we never know if we have gotten them all and this is only the first big step. (At the start, most CML patients may have all 20-25 cells with the Ph abnormality. With treatment one hopes that the number of Ph containing karyotypes decrease and eventually reach the magic zero number. When all cells are now zero and no Ph cells observed in the metaphases sampled, one is then deemed in complete cytogenetic remission CCR).
The fact that it took this long is reason to be hopeful. No matter what the situation, we look for a solution. Short term is sometimes all we can get, but it will get us to the next phase and give us us extra time; in the meantime, we move on, never giving up. Never allow yourself to spend too much time on a pity party, you are wasting your time on negative thinking. There is a time to cry and a time to dry the tears and get to work. The employees liked seeing me come in to the office supply stores, because they knew I was there to buy paper, printers, faxes, ink cartridges and a mass of other office supplies. In these 14 plus years, I have used up 4 computers, 2 faxes, ink cartridges and 6 or 7 printers, always keeping one black and white, and one for color. I made copies of everything; however, now I do less copying, as I have learned a little.
When Annie asked me to write something for her CML blog, I wondered what I had to offer and it is what I have learned from questions that have long been asked of me, and my answer is to always keep hope alive. If someone as old as me and having had CML as long as me has managed to hang in and live this long, then there must be hope for them, too. There is no free lunch, you have to work at it. Look for the best doctors and hospitals, join a support group and keep your mind active. Be thankful for what you have, there are billions of people who would trade places with you, just to have a clean bed to sleep in, a roof over their heads and 3 meals a day. I think I am pretty darn lucky to have been diagnosed just before the second generation CML drugs were approved and offered to everyone. What you don't know can hurt you, so I am of the opinion that we never finish learning - there is always one more person to teach me something I need to know and if I close my mind, I will never know what it was.