Mid June 2017, soon after I can swallow again, I started chemo treatment alongside radiotherapy. It was a 4 weeks daily oral 100mg Temozolomide Tablet (Temodal).
::: TEMODAL CHEMO
Temodal is the first-line treatment, because it is an oral alkylating agent which crosses the blood brain barrier and is used widely in the treatment of high grade gliomas.
Disappointingly, given in the standard way (alongside radiotherapy and subsequently for five out of every 28 days) this benefit has not been seen in DIPG patients, with median survival time of 9 months (general statistic number not applicable to each individual!) similar to historical controls treated with radiotherapy alone.
During my stay in the hospital, I didn’t completed 4 weeks temodal course. Only 3 weeks, because I felt sick. Then after I was back home, a month post radiotherapy, I came back with 5 days oral temodal out every 28 days.
August 2017, temodal 200 mg
September 2017, temodal 300 mg
October 2017, temodal 300 mg
I have to have blood test once a week. I hate needles, and still scared of it each time taking blood test. I have thin vein, so sometimes junior nurses missed it and I have to endure 2-3 attempts to get my blood out. I like the senior nurse, they might look scary, less talk less smile, ignoring my pity face, grab my arm, feel the vein, spray antiseptic, stick the needle in and voila, done! A pro!
::: SIDE EFFECTS FROM TEMODAL
The most common toxicities associated with induction temozolomide were: lymphopaenia (low level white blood cells that function for immune system), neutropaenia (low level of white blood cells fighting infections), thrombocytopaenia (low level of blood), infection, leucopaenia (diminished white blood cells) and nausea.
Fortunately, I didn’t feel nausea nor puking from temodal. The side effects from It on me were fatigue, loss appetite, and hair loss.
Usually the day-4 until day-7 I was so weak, stayed in bed the whole day, forced myself to eat at least an apple for the day. But after day-8, I felt better.
I have a pet in the house. Not a dog, not a cat. It’s my hair. Hundreds of hair falling everyday, it’s everywhere on the floor, on the bed, in the bathtub, in the sink. I had super thick hair, reason I have not bald yet (also thanks for God’s kindness), but it’s very thin now.
“Look, my hair”, looking sad, showing Tobias a big handful of hair
“You still have a lot of hair, sweetie”
“It’s very thin, worst case, what if I have to shave and bald?”
“I will shave you. You will still look beautiful, and I will shave mine too!” He smiled.
I smiled, his comfort wins over my worries.
::: WHEN TEMODAL DID NOT WORK
November 2017, MRI showed the tumor progressing again. The temodal did not work.
The doctor want to administer me with second-line treatment, another chemo drugs.
Mid November 2017, I have lymphopaenia, low level white blood cells. New chemo postponed.
Today, my white blood cells level is not getting better, again I can not receive chemo.
Somehow I feel happy I don’t have to take chemo. Although I know Chemo in medical world, is the only way now to fight the tumor.
I don’t know how the new chemo drugs will affects my quality of life. I will update you after I can take it.
Now hopefully my white blood cells level going up soon. I will have blood test on Friday next week.
Always always be thankful for health. For body, for hair, thick or thin, straight or curly, even for grey white hairs. When you’re healthy inside outside, you are handsome, you are pretty.
For warriors who are in chemo treatment. I understand exactly how it feels. We have to although we don’t want to. Don’t lose hope, don’t give up yet. I pray for the treatment is working in you, in us, less side effects, and miracle healing is happening. Amen.
“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” Romans 8:26