Hi Everyone. It has been a while since I posted. It's nice to see some of the folks still posting from back when my husband was diagnosed and "hello" to those I haven't met yet!
To quickly recap my situation, my husband was diagnosed with HCL in Jan. 2006 at 38 years old. He received the 7 day infusion of 2CDA shortly thereafter and his counts have been hovering at just below normal range pretty much since then. He has been relatively healthy, even though I think we may be getting closer to treatment again soon. A positive sign, I suppose, is that our three daughters ages 4, 7 and 9 all just had the swine flu and my husband didn't get it. (phew!)
I have been charting his counts since diagnosis and am wondering if the common understanding is still that once the ANC goes below 1000 it is time to treat again? His latest counts are WBC 3.3 RBC 4.15 PLT 142. ANC 1700 (down from a high of 2900 in 2007)I can see that his percentage of Lympocytes to Neutrophils is on the rise lately (42% to 52%), which makes me think the hairies are coming back.
Also, if anyone would like a copy of the Excel spreadsheet template I created, please contact me. I included a brief synopsis of what each count means, relative to HCL, which we have found to be helpful.
It's always good to hear from you. Yes, you're right: The standard rule of thumb is "1-100", meaning neutrophils below "1" (one thousand cells per microliter) or platelets below 100. Not every doc follows this rule, but in our experience, all of the "experienced" HCL docs do.
Many HCLers have slightly low, but pretty much stable, counts for years. However, the trend in the lyms-to-neuts ratio suggests treatment somewhat sooner rather than later. It's worth noting that your husband's counts still have quite a ways to go, so that may take a while. There are no guarantees with HCL, but I'd expect re-treatment to be in the "one to a couple of years" range, as opposed to either the "couple of months" or the "decade or more" ranges.
Wow, you must have had your hands full with all your daughters getting sick. My nieces and nephews have been sick recently and I wonder if was swine flu. Glad I didn't catch it!
Hope your husband stays in remission for a long time yet.
Could you please send me the excel spreadsheet?
I was diagnosed with Hairy Cell Leukemia on February 2009 and I would like to keep the same records as you had. I wil start treatment next month.
Was this your first post then? I don't recall
Seeing - meeting you here before. I'll be praying
For your tratment everything will go textbook -
You will be fine!
Hi Laura,
I had a spreadsheet when I decided to change to a different oncologist and it was invaluable. I got it from a Chronic Lymphocytic Leukemia website, but I'll have to search a bit to find it. I was diagnosed/treated in Sept/Oct 2005. Let us know how you're doing and ask any questions because most of us have been through one or more treatments.