I am not an expert, but it appears CHR just means pretty close to normal, specifically your white blood cell count. Some people stay on the low end of things for years (even a decade or more, as one of our members here still is). I think it is too simple to say, for example, if you don't reach CHR in less than 3 months, your prognosis is poor. Scientists just don't have enough to support that completely. It is just an "educated" guess. And it often makes those of us, (namely me), who are not in the "norm" feel terrible. But the guess is based on how some groups of CMLers reach, what a handful of researchers decide, are milestones. If you are/were not in one of the samples being studied, then you could be anywhere on the spectrum. Yes, most people will be in the center, but there is no way right now to determine if you will fall into the middle, right, or left. Things will play out as they will.
We all would like to know how long we will live with this disease. And even though we have what may be considered medically, (or for insurance purposes), "a potentially limited life span", there is no way to know if we would have lived longer if we didn't have CML. Moreover, we may even survive, as some of us have already, otherwise seemingly healthy friends, acquaintances and family. Anything is possible and we have very little control over it.
The time right after dx is the absolute worst. I know I was obsessed with who would be a mother figure to my baby and toddler. I begged my husband's sister who is over 60 to be there for my daughter. Should I plan my funeral? I was sure I was going to die tomorrow (didn't help that I had an onc who treated me like I would and shouted fire with every CBC and was planning to give me a SCT). Thus, it is very important to feel comfortable and confident in your onc and/or hematologist.
At this point in my journey, I feel it is too soon to pick out flowers and what dirge should be played. I think it is safe to recommend that you should put the funeral planning on hold too. We are not automatically doomed like is such the popular belief when a person is dx with cancer, esp. with CML. And you will not have one foot in the grave or a direct line to the "great beyond". (You would not believe what has been said to me! Hope you are spared.)
I will have been dx 3 years this Nov. I have not made all the milestones, but I still have a cytogenic response (100mg Sprycel). I started on Gleevec, but by 9 months, it seemed as if my response was waning (a "so-called" bad sign). I also had really severe anemia (dangerously low hemoglobin), but a little anemia is not unusual for people on TKIs with CML. Despite the bad anemia, I still was considered CHR.
If I were to have a great prognosis, I would be MMR by now and I would have had a good response on Gleevec. Of course, I am a worried, and I have my good and bad days emotionally. But there is a chance I could end up on the "excellent" or middle part of the spectrum anyway. It is still is anybody's guess. Some people who were told to check into hospice ended up beating all odds. I just so happen to know someone who I volunteer with who is alive and well 30 years after her aggressive, and seemingly hopeless, lymphoma dx. She was cured. In her case, she had a baby son to live for and a doctor who would not give up on her. So, miracles happen, whether God or man-driven.
I feel strong, healthy, and am relatively happy. I am living my life as I did just before I was dx, (but with a bit more attention and care). And I don't notice any side-effects that one could say are definitively a result of the TKI or CML. It gets less scary as time goes by. Please write if you are feeling down. It is a good idea to take care of your head and heart as well as your bone marrow. Like I said, I still have my good and bad days, but I expect to outlive this disease or live long enough for research to definitively keep it from progressing. So, bully to milestones and survival predictions.
Nevertheless, I hope as time goes on you come across more and more things that put your soul at ease.
I wish you smooth sailing and quick healing, and, of course, a long and happy life,
Tedsey
Congratulations!
