What should we be doing right now except for being pushed through the system and sitting around waiting for???? Just last week we received confirmation that my wife has CML. We discovered this through our process of trying to figure out why we were having fertility issues. The Dr. actually did the Bone Marrow test on a whim. We just got back her BCR/ABL ratio and it is 55% which from what I am reading this does not seem that high. Her WBC was 40.4 with a standard range of 4.0 - 10.7 K/uL. Again from what I am reading for a person with untreated CML this is a low number as well. I should also mention she is only 37 years old and in other wise good health. Looking back with 20/20 goggles now I guess we did see a couple of symptoms, but I would say they are pretty minor.
With the above snapshot it would seem that she is far from your typical CML case. I guess that is my biggest question since we are currently being bombarded with information overload both going through the process and doing the Dr. Google thing. I think we are fortunate that we live in the Seattle area and have Fred Hutch Cancer right down the street. We are still waiting to go in for our initial consult. From what I am reading and the initial conversations we have had at Group Health I am guessing they will stick her on Gleevec and then we will go from there.
All things considered it seems like there is a lot of hope, but I would be lying if I told you that we were both more than a little scared. Honestly I think my wife (and myself) are still in shock. All I know is I have the best wife in the world and I am lucky to have her. It just so happened about 5 days after diagnosis we celebrated our six year wedding anniversary. I want to do everything in my power to make sure I take good care of her and do anything and everything I can to ensure we live a long and "normal" life.
If possible I would love feedback on the following questions and in particular would love to hear back from anyone that fits my wife's profile...
- What should we be doing right now except for being pushed through the system? It seems hard to just sit around and wait.
- What metrics/measurements should we be looking at? How do we measure success and failure since she seems to be far from stereotypical. Or is she stereotypical?
- Probably way to early to start discussing, but again the reason we discovered this is due to fertility issues. Does anyone have any experience with CML and fertility? The Dr. we are currently talking to does not think he sees a direct link, but from what I am reading I am not 100% certain.