Since I will be dx 3 years this Thanksgiving, I guess I qualify somewhat as a "vet". I have had a lot of extra issues with CML most don't experience, so in my 3 years, I guess it could equal a decade (it sure has aged me that much anyway).
When I was first dx, I was given Hydroxyurea and Gleevec (actually, I had to ask the onc after a couple of weeks if I still needed to keep taking the Hydroxyurea--a chemo drug---with the Gleevec and she told me "by all means" to just take the Gleevec, like I should have known this...). I was also shot up with Wafarin daily for about a week, (my PLT at dx were just above 600,000). My PLT, WBC and ANC became very low after the drugs. So, in my first weeks on Gleevec, I was given a break. It was around 2 weeks and my counts did not recover much. Went back on Gleevec. A week or two later, I was off again due to low counts, (this is an approx. I don't remember exactly how long my breaks were, but they totaled about 4 weeks 2 months after dx).
My counts did not recover off the drug. So, the onc I saw at the time emailed Dr Druker. He advised that I not go off Gleevec at all despite how low my counts got. So, I was given cell stim shots to raise my ANC and told to never go out (but the never go out thing was terrible advice--I had a 1 year old and 3 year old and could not shop, take them out or do what I needed to do to maintain a household). For months my WBC and ANC stayed low, even on the shots. My PLT stayed low too.
After a while, my counts slowly recovered and got to a point where they were low, but somewhat stable. I was able to stop the shots (Neupogen and Neulasta). After that, I had a serious bout of anemia and bleeding (well, I started bleeding since taking the TKI, but it got worse and I needed transfusions and painful shots of Aranesp). After 9 months on G and very little movement in cytogenics and PCR, I was switched to Sprycel (the onc also thought a drug change was worth a try--it was a shot in the dark, but couldn't really hurt). Miraculously, the anemia improved and the bleeding stopped (also with the help of birth control pills). My WBC and ANC improved. However, my PLT stayed very low. I am still in the 20-70 range (yes, it fluctuates that much).
Nevertheless, I do not have any problems with clotting and injuries heal normally. I don't bruise easily. So, whatever PLT I have, they seem to work well. That is key. It is possible to have low PLT that do their job and high PLT that don't work well. If PLT get too low for your onc's comfort level, there are PLT transfusions and there is a shot for it too. Most CMLer's blood counts improve on their own over time (without transfusions and shots). Drug breaks often work. However, if things get worse, there is the road less traveled that I was told to take.
So, basically, all an onc can do is keep a close eye on things. Drug breaks are a common practice. I got all freaked out when my counts were plummeting. However, it was all needless anxiety. Basically, there is nothing we can do about it. Hopefully, we are and feel we are in good hands with our oncs. In time, things usually get better for most CMLers. Low counts in the beginning is very common, esp. low PLT. I am an unusual case where my counts are still pretty low. However, it has not changed anything in my life. I still run, run around with my kids, volunteer in my son's Kindergarten, the community, take care of my family, etc. At this time, life is very good. I wish I was told not to freak out as I did in the beginning. I just needed to hear, "Live your life. We will take care of the rest with your input." It wasn't until I found this board that I began to relax and feel well informed.
In the beginning no one would be normal if they didn't freak out at dx or feel extreme terror and anxiety. It passes as low counts usually do.
I wish you all quick healing and good health,
Tedsey