Title : Need recommendations for consulting for CCNU+Temozolomide for my mom
link : Need recommendations for consulting for CCNU+Temozolomide for my mom
Need recommendations for consulting for CCNU+Temozolomide for my mom
Hi folks,
My mother is a GBM patient who was diagnosed in September. Her GBM is IDH1/IDH2 -ve, is methylated and she almost had a complete resection. She has completed her 6 weeks of radio/chemotherapy and has complete 2 cycles of 5/23 temozolomide. The following study about using a combination of CCNU(Lomustine) + Temozolomide for methylated GBMs has had me interested for quite a while now:
http://ift.tt/2EHHVmU
I wish to switch to the CCNU + Temozolomide cycles for my mom since this protocol, I see brings about a significant improvement in life expectancy.
However, when I brought this up to my oncologist, I received quite some discouragement on doing this protocol, which is why I began with the usual standard of care temozolomide cycles. I recently got to know that this is almost standard treatment by oncologists in Germany with methylated GBMs.
I reached out to several oncologists in Germany to consult on this protocol via skype/call, but they refused to do so since it is a toxic therapy and they don't want to do it from distance.
I'm stuck. I probably know this protocol will definitely help improve my mom's life expectancy but I don't have an oncologist to do this protocol under.
My questions
- Can somebody with a good oncologist/hospital which can consult me on skype/call for this chemotherapy protocol? It shall be of great help for me.
- If you don't know of one, would you recommend switching to the Lomustine+Temozolomide cycles by myself? I don't really want to self medicate since I don't know the answers to the following questions:
a. Whether it is okay to switch from temozolomide to temozolomide+lomustine cycles
b. What are the possible side effects that can happen with this chemotherapy regime and how to tackle them(Low blood counts, nausea, weakness, headache etc)
c. How many more cycles of Lomustine+Temozolomide cycles should I really do, and how should I dose them.
d. Reactions with the supplements that my mom already is on.
I really look forward to your response.
My mother is a GBM patient who was diagnosed in September. Her GBM is IDH1/IDH2 -ve, is methylated and she almost had a complete resection. She has completed her 6 weeks of radio/chemotherapy and has complete 2 cycles of 5/23 temozolomide. The following study about using a combination of CCNU(Lomustine) + Temozolomide for methylated GBMs has had me interested for quite a while now:
http://ift.tt/2EHHVmU
I wish to switch to the CCNU + Temozolomide cycles for my mom since this protocol, I see brings about a significant improvement in life expectancy.
However, when I brought this up to my oncologist, I received quite some discouragement on doing this protocol, which is why I began with the usual standard of care temozolomide cycles. I recently got to know that this is almost standard treatment by oncologists in Germany with methylated GBMs.
I reached out to several oncologists in Germany to consult on this protocol via skype/call, but they refused to do so since it is a toxic therapy and they don't want to do it from distance.
I'm stuck. I probably know this protocol will definitely help improve my mom's life expectancy but I don't have an oncologist to do this protocol under.
My questions
- Can somebody with a good oncologist/hospital which can consult me on skype/call for this chemotherapy protocol? It shall be of great help for me.
- If you don't know of one, would you recommend switching to the Lomustine+Temozolomide cycles by myself? I don't really want to self medicate since I don't know the answers to the following questions:
a. Whether it is okay to switch from temozolomide to temozolomide+lomustine cycles
b. What are the possible side effects that can happen with this chemotherapy regime and how to tackle them(Low blood counts, nausea, weakness, headache etc)
c. How many more cycles of Lomustine+Temozolomide cycles should I really do, and how should I dose them.
d. Reactions with the supplements that my mom already is on.
I really look forward to your response.
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