I’ve been on Ponatinib, a clinical trial drug that fights the t315i leukemia mutation I have, for one month so far. Before I began treatment, I was off of medication altogether for three weeks. The first test showed an abnormally high white blood cell count. To simplify things, this is how leukemia presents itself. After two weeks on my new medication, my counts normalized. To not bog anyone down with medical terminology, I pulled out what’s important and posted below.
3/22/12
White Blood Cells 19.2K/UL – Normal (4.0-11.0)
Red Blood Cells 4.67 – Normal (4.0-6.0)
Platelet Count 198 – Normal (140-440)4/5/12
White Blood Cells 9.9K/UL – Normal (4.0-11.0)
Red Blood Cells 4.54 – Normal (4.0-6.0)
Platelet Count 173 – Normal (140-440)4/19/12
White Blood Cells 5.4K/UL – Normal (4.0-11.0)
Red Blood Cells 4.90 – Normal (4.0-6.0)
Platelet Count 151 – Normal (140-440)
So far, my medication is working with little to no side effects. A truer marker of how well it’s working will be determined at the 3 and 6 month mark, when the liquid from my bone marrow is examined to see if the baby white blood cells are forming normally, to fight disease. If I catch them napping, or breakdancing, then ooooh don’t get me started.
Another thing they’ll keep an eye on is my platelet count and liver enzymes. This medicine can sometimes cause a spike in enzymes, which can lead to pancreatitis. I’m obviously hoping to avoid that. Otherwise, there will be another break in treatment as they lower the dosage.
From a progression and treatment standpoint, it’s a slow, enduring process. As impatient as I can sometimes be, I’m very thankful for that.I’ve learned to slow things down, to not try to control the uncontrollable.
Thank you for your prayers. I can’t say with certainty that everything will be amazing, but I’ll celebrate the small victories with a grateful heart. God is good, regardless of the circumstances I encounter.
I’ll go in for my last blood test Thursday, 5/3. After that, I won’t have another until I visit MD Anderson at the end of June. It’s wild to think that my journey has brought me to this place, but I’m ready to move forward with life.
I have been diagnosed with MDS. That was April, 2018. I did 13 months of Vidaza and it didn’t work. I decided against chelation and more drastic chemo. I should say I am 76 years old. I had been very active. My husband and I ride in the HHH bike ride. I have had no treatment the last six months and feel I could be going into AML. My white blood count is normal, my hemoglobin is around 7.5 and my platelets are in the 50’s. Any suggestions?
Hi, thanks for the comment! The best approach is to gather as much medical information as you can. Then, look at all avenues of treatment and discuss with your husband which you want to pursue, considering your quality of life as the greatest priority. I want you guys to keep having great moments together!