Hi folks,
My mother is a grade 4 brain cancer patient(GBM - Methylated) who was diagnosed in Sep 2017. She had a complete resection in her surgery. As of now, she has had radiotherapy + temozolomide, 3 consequent cycles of temozolomide and 6 more cycles of temozolomide+Lomustine. We switched to lomustine + temozolomide protocol because stumbled upon a reserarch at the University of Bonn because we noticed significantly improved survival rates with this protocol for methylated cancers.
http://btcocktails.blogspot.com/2017/11/sno-summary-episode-1-ceteg-trial-ccnu.html
(Median Overall survival of 46.9 months in the TMZ+Lomustine arm vs 30.4 months in the TMZ arm)
Since we started this protocol midway, we didn't go very high on the lomustine+temozolomide dosage, and wanted to complete 6 cycles. (100 mg/m2 for lomustine + 110 mg/m2 of Temozolomide for all the cycles)
My questions
Since my mom's last 3 MRIs have shown no growth, my oncologist is keen on doing 3 more cycles of Lomustine + TMZ. He has no logic/grounds backing it.
Her platelets and RBCs have always stayed stable, but her white blood counts stay between 1500-2500, and that too with iron/folic acid/filgrastim support.
Since my mom has already had more chemotherapy than most other patients and than the research that I shared, I'm not very keen on doing more of chemotherapy since it might end up having more side effects.
1. Does anyone have experience with doing more than 6 cycles of temozolomide + lomustine? If yes, how has your experience been like with going beyond the 6 cycle mark? I'm scared of her blood counts getting messed, or long term effects of going beyond the 6 cycle mark.
2. Is there some other chemotherapy protocol that you would suggest/your oncologist has suggested to keep the cancer at bay? Because the chemotherapy protocol seems to be working for my mom, and I'm very scared that stopping this might just result in the cancer coming back too.
Look forward to your response!
My mother is a grade 4 brain cancer patient(GBM - Methylated) who was diagnosed in Sep 2017. She had a complete resection in her surgery. As of now, she has had radiotherapy + temozolomide, 3 consequent cycles of temozolomide and 6 more cycles of temozolomide+Lomustine. We switched to lomustine + temozolomide protocol because stumbled upon a reserarch at the University of Bonn because we noticed significantly improved survival rates with this protocol for methylated cancers.
http://btcocktails.blogspot.com/2017/11/sno-summary-episode-1-ceteg-trial-ccnu.html
(Median Overall survival of 46.9 months in the TMZ+Lomustine arm vs 30.4 months in the TMZ arm)
Since we started this protocol midway, we didn't go very high on the lomustine+temozolomide dosage, and wanted to complete 6 cycles. (100 mg/m2 for lomustine + 110 mg/m2 of Temozolomide for all the cycles)
My questions
Since my mom's last 3 MRIs have shown no growth, my oncologist is keen on doing 3 more cycles of Lomustine + TMZ. He has no logic/grounds backing it.
Her platelets and RBCs have always stayed stable, but her white blood counts stay between 1500-2500, and that too with iron/folic acid/filgrastim support.
Since my mom has already had more chemotherapy than most other patients and than the research that I shared, I'm not very keen on doing more of chemotherapy since it might end up having more side effects.
1. Does anyone have experience with doing more than 6 cycles of temozolomide + lomustine? If yes, how has your experience been like with going beyond the 6 cycle mark? I'm scared of her blood counts getting messed, or long term effects of going beyond the 6 cycle mark.
2. Is there some other chemotherapy protocol that you would suggest/your oncologist has suggested to keep the cancer at bay? Because the chemotherapy protocol seems to be working for my mom, and I'm very scared that stopping this might just result in the cancer coming back too.
Look forward to your response!
The official "Stupp" protocol, as applied in the 2005 trial, was 6 monthly cycles of TMZ. But the choice of 6 cycles was somewhat arbitrary, and now 12 cycles is the actual standard at many centers.
ReplyDeleteThe same could perhaps be said for TMZ + lomustine in that more than 6 cycles could lead to longer disease control than stopping at 6. With long-term use of alkylating chemotherapy, the risk of treatment-related myelodysplasia increases, but this is rare, and the risk of recurrent GBM is overwhelming compared to the risk of secondary treatment-related myelodysplasia or leukemia.
I think in this situation (the absence of research comparing 6 versus more than 6 cycles of TMZ + CCNU) I would allow myself to be guided by quality of life and the results of bloodwork, and maybe take a break from chemo if blood counts were going too low, or treatment-related quality of life issues became too much.