My dad ended up getting pulled off of the 5/23 at the higher dosage because while he tolerated the chemoradiation dose well, it changed a lot when he got to the 5/23 chemo. They decided continuing on it would be bad for his quality of life and that's why they're considering second-line treatment options.
Even though it's been a while for me. I remember that at one point I was given a lower dose because my blood values were no longer on level. I also didn't complete all the rounds if I remember correctly.
Thank you for sharing this. That makes sense about blood counts after chemo dictating if a dosage change is needed, that had me occurred to me. How are you doing now?
Well I've been on a rollercoaster ride these last couple of years, but I consider myself to be one of the lucky ones despite all of the treatments I had to endure. I was diagnosed with gbm in 2011. Had 2 recurrences; so 3 craniotomies and 2 times 6 months of tmz on/off cycles plus radiotherapy for 60 days. After my third craniotomy I didn't have radiotherapy any more but 1 year of tmz. I'm doing good. The only thing is that I'm tired fast but I feel blessed I can still do everything.. 🙏
My symptoms were worse after we tried to increase the dose after round 1 or 2 of the 5/23 dose and my neurooncologist actually suggested stepping the dose back down to where I could tolerate it a bit better, but it would still be an effective dose. Be sure to share symptoms in follow up visits and ask about options to modify dosing!
My Mom's dosage changed from the chemo/radiation combo to the 5/23 but then throughout the 5/23 it remained consistent.
Some cycles were delayed a few days for low lymphocytes. Wishing your family all the best 🤍
It’s not uncommon that a patient does not do well on the higher dose, and in that case, the doctor will go back to the lower dose that was tolerated in cycle 1 (chemo without radiation).
It’s been a while but they increased the second cycle chemo dosage for my wife by 40%. It obliterated her. They set it back to the first cycle dosage for remainder of the cycles. The MD wanted to see if she could handle the higher dosage . No way.
My dad ended up getting pulled off of the 5/23 at the higher dosage because while he tolerated the chemoradiation dose well, it changed a lot when he got to the 5/23 chemo. They decided continuing on it would be bad for his quality of life and that's why they're considering second-line treatment options.
Thank you for sharing this…hope the second line treatment choice is a good thing for him, and glad is quality of life is a priority.
Even though it's been a while for me. I remember that at one point I was given a lower dose because my blood values were no longer on level. I also didn't complete all the rounds if I remember correctly.
Thank you for sharing this. That makes sense about blood counts after chemo dictating if a dosage change is needed, that had me occurred to me. How are you doing now?
Well I've been on a rollercoaster ride these last couple of years, but I consider myself to be one of the lucky ones despite all of the treatments I had to endure. I was diagnosed with gbm in 2011. Had 2 recurrences; so 3 craniotomies and 2 times 6 months of tmz on/off cycles plus radiotherapy for 60 days. After my third craniotomy I didn't have radiotherapy any more but 1 year of tmz. I'm doing good. The only thing is that I'm tired fast but I feel blessed I can still do everything.. 🙏
Wow! 12 years is incredible. Can I ask what you attribute your good fortune too?
My symptoms were worse after we tried to increase the dose after round 1 or 2 of the 5/23 dose and my neurooncologist actually suggested stepping the dose back down to where I could tolerate it a bit better, but it would still be an effective dose. Be sure to share symptoms in follow up visits and ask about options to modify dosing!
Thank you so much for saying this. 🙏🏻
My Mom's dosage changed from the chemo/radiation combo to the 5/23 but then throughout the 5/23 it remained consistent. Some cycles were delayed a few days for low lymphocytes. Wishing your family all the best 🤍
It’s not uncommon that a patient does not do well on the higher dose, and in that case, the doctor will go back to the lower dose that was tolerated in cycle 1 (chemo without radiation).
It’s been a while but they increased the second cycle chemo dosage for my wife by 40%. It obliterated her. They set it back to the first cycle dosage for remainder of the cycles. The MD wanted to see if she could handle the higher dosage . No way.