My WBC will not stay up. I am now having labs drawn twice a week and neupogen 1-2 times a week. My platelets are slowly rising. RBC, hemoglobin, and so on are normal. I have no blasts. My Dr told me this could go on for awhile. He told me he has a patient with the same issue after 3 years. I thought at this point I would be past all this. How do I move on?
Keep your head high, be optimistic. My son took several months to get back to normal WBC/ANC/SEG%/etc. after AML and he was a very young, resilient boy (age 5 at the time). We just celebrated 2 years post-treatment, and everything has been very normal for the last year. I now regret the worry and playing amateur Oncologist in those early months after treatment was over, when we got his labs at the checkup. I was forever trying to determine if any of the "flags" on his CBC were meaningful, and tried to compare one month's labs with another in hopes of predicting the future. I eventually stopped reading the labs, since the worry was not at all productive (and there was no rhyme or reason for the "trends" that I kept trying to identify) . All we could do as a family was to hope for the best and live our lives with ambitious long-term and short-term goals and fret about something other than cancer. I found it best to focus my thoughts/hopes/dreams on the best-case and deal with the setbacks if they ever come (because they might not ever come). I felt much better after I stopped worrying that lab results might mean that something bad is looming on the horizon.
There are so many reasons why our various cell counts might be slow coming back up to normal. Medications and infections are the most standard reasons our WBC won't rise. Sometimes it's just a lazy marrow that will get around to it in time.
I think the thing we don't realize in treatment is that what we think is going to happen -- how well we're going to be by a certain point or how our recovery is going to progress -- isn't necessarily what will happen. That illusion is helped along when the docs answer our questions using a standard scenario. That's kind of like the averages of various instances and doesn't really account for the highs and lows that real people experience.
How do you move on? I don't know as that's something else that can be different for all of us. What I would probably do, faced with your situation, is to remember I am cancer free at the moment and enjoy life. You can't be successful at that every moment, without going into severe denial, but you can have a lot of good time while its working. After awhile it will become a lifestyle.
I'm assuming, of course, you're beyond neutropenia. If you're still fighting that, well, follow the advice above with frequent hand washing and avoid getting into dirt or cleaning a litter box.
Every situation is different. We all recover in our own ways. It will happen for you.
Thanks for the support. I'm actually in a good place emotionally, just shocked that this could go on for months or years. Trying to move past this and not let cancer define me is hard. I'm learning to find my place in this life where everything has changed. I'm feeling more and more that I want to make a difference, that having AML at 35 was not in vain.
I'm still neutropenic. Trying to follow the diet. Im thinking a ceasar salad and frozen grapes sound really good right now. I won't have them I'm a rule follower by nature. Funny thing is I have a strong family history of heart disease sure hope my diet of meat and carbs don't come back to bite me one day.
My family had no cancer but did have heart/circulatory issues. That killed my mom, will probably kill my dad and I've always expected that was what's going to get me. So, imagine the surprise when the doc said "leukemia" of all things. That was a kick in the head.
Trying to move past this and not let cancer define me is hard...I want to make a difference, that having AML at 35 was not in vain.
I think there's too much concern about that. I mean, there is no one solitary thing that defines us as people. But to try to ignore the impact that cancer has on us is kind of a form of denial. And, if you want to make a difference in the leukemia world, you're going to have to let it define you to a degree. Otherwise you won't have the motivation or interest to do anything.
I'm over eight years out from my dx and I have to be defined by the disease a bit in order to be here. The trick is to "leave it at the office," so to speak.
For those of us who get to keep living after this disease, it can be a kind of blessing. I got to assess my life and learn lessons about what I truly value well before the time I would have had I lived a normal lifespan without confronting my mortality. All this to say, I learned lessons and made decisions to change many aspects of my life dramatically. In that way, the disease has permanently helped define me.
I think the trick is to just be yourself. So many of us spend so much time trying to be what we're not when we're fighting this disease. Who needs that extra stress? Let what comes to you come on a natural flow and go with it.
I also found that chemo had longterm effects on my counts ; especially after 4 sessions; chemo does longterm damage to marrow system; and then they may want to have you in for followup sessions every 2 years etc; only you can decide what you are willing to do. It is a balancing act. likewise diet; I ate less meat and I ended up B12 short, which caused other problems. am now 10 years past; 9 1/2 years in remission; and I have found that doing some 'Healthy' things or dietary ideas caused other problems. It really is a balancing act. I dont take alot for granted, and I google much .
I went into remission 04/09/11 during my induction. Four consolidations that I finished at the of July. My platelets are still not normal they range from 80 & 110. I have an Ocologist I see in my home town and a Hematologist at Vanderbilt. They.both tell me I have nothing to worry about. No blasts just my bone marrow took a beating.
If your Doctor was not concerned I wouldn't be either. Living by numbers is exhausting, as bad as I hate being stuck twice a week to check my forever low WBC at times I think it must be easier, at least it is common for me and I don't have the anxiety of a once a month or so waiting on lab results.
Hopefully someone else will have more insight, best of luck.