Hello!
I, like many of you, need optimal treatment for my mother.
My mother has glioblastoma (MGMT methylated). She just finished the standard course of radiotherapy + TMZ. At the moment I'm looking for how to be treated more effectively.
Our doctor advises adding 8 courses of Nivolumab together with AVASTIN + CCNU.
He says that with such a combination, the probability of a complete cure is 30%.
Also, with such a combination, the doctor suggests not using TMZ.
All this seems to me very doubtful!
What would you suggest?
With respect to all and best wishes, Semyon
Did your doctor provide any evidence to support his estimate of 30% chance of complete cure with Nivo + Avastin + CCNU. If this were true, it would be revolutionary and every center in the world should be using it. I'm skeptical, although maybe something was lost in translation.
ReplyDeleteTMZ + CCNU now has phase 3 trial evidence to support its use in newly diagnosed MGMT methylated GBM.
Are oncologists free to prescribe regimens other than the standard TMZ "Stupp protocol" for newly diagnosed GBM in Russia?
The doctor's statements also seemed strange to me.
DeleteMany doctors with whom I spoke in Russia offered only standard treatment. But this doctor is from a small private clinic.
For some reason, this doctor focused on the drug Nivolumab, although in this blog I have not yet seen any successful data from using it.
What can you say about Nivolumab for glioblastoma?
The largest study of nivolumab for GBM was the CheckMate 143 trial, which hasn't been published in full yet, but only as an abstract. This was a randomized phase 3 trial for recurrent GBM comparing nivolumab alone with bevacizumab alone.
Deletehttps://academic-oup-com.proxy3.library.mcgill.ca/neuro-oncology/article/19/suppl_3/iii21/3743874
The response rate with nivolumab alone was less than with bevacizumab alone (8% versus 23%), but the responses were more durable with nivolumab (median 11.1 months versus median 5.3 months with bevacizumab).
The phase 1 part of the trial has been recently published in full as an accepted manuscript in Neuro-Oncology.
https://academic.oup.com/neuro-oncology/advance-article-abstract/doi/10.1093/neuonc/nox208/4587521?redirectedFrom=fulltext
unfortunately, this link requires a username and password. maybe you can copy the entire text here?
Deletehttps://academic-oup-com.proxy3.library.mcgill.ca/neuro-oncology/article/19/suppl_3/iii21/3743874
Sorry, I was logged into a University library. Here is a link that should work for you.
Deletehttps://academic.oup.com/neuro-oncology/article-abstract/19/suppl_3/iii21/3743874?redirectedFrom=fulltext
Here it is also reported that:
Delete"Studies of nivo in combination with RT ± TMZ in pts with newly diagnosed GBM are ongoing."
Is there any preliminary information?
My mom has just finished radiotherapy and temozolomide. We want to go now to TMZ + CCNU (like in CeTeG trial). I also consider the addition of Nivolumab, but I can not find information about its effect at this stage.
I've not seen any preliminary information from the newly diagnosed trials.
DeleteOne thing to consider is that adding CCNU would probably drop lymphocyte counts even lower than TMZ alone, which could compromise the effect of immunotherapy.
Hi Semyon,
ReplyDeleteMy husband was diagnosed with a GBM in January of this year. He had a total gross resection and completed the standard protocol of TMZ with radiation back in April. I can't tell you much about the 3 drug combination you mentioned, but can tell you that being that my husband's tumor is an unmethylated MGMT (not good pathology) we researched everything prior to starting a treatment plan. Ultimately we decided on TMZ and Nivolumab which my husband was taking for several months (5 treatments to be exact). He was on TMZ 5/28 plus Nivolumab 150mg/dL2 every 2 weeks. The Nivo is a quick 1 hour infusion and really didn't have major side effects up front with the exception of slight fatigue. They do recommend additional fluids following each dose, but that's true for most therapies.
Unfortunately as the drug accumulated my husband started to show signs of increased creatine levels and had to stop the Nivo. Fortunately his kidneys bounced back rather quickly and we are hoping to due to start Nivo again after the New Year. At this point my husband's MRIs have been stable with no signs of recurrence (praying daily that he stays this way). He's still taking the TMZ 5/28 regimen and his NO wants to keep him on that for 12 months instead of the recommended 6mos. Our NO says new research has shown that a minimum of 12mos can be beneficial for patients with newly diagnosed GBMs. I wish I could tell you what miracle has allowed my husband to not have a recurrence after nearly 12 months, but I truly think its a combination of all the factors above.
Last thing I'll mentioned about Nivolumab...our NO filled a compassionate use request with BMS to get the drug free (especially since it's not approved for GBMs in the US yet). BMS has truly been a guardian angel!!! We were approved for a year so I highly recommend you talking with your oncologist about filling out the paperwork.
I wish you all the best with your mom. Trust me those caring for a loved one, know firsthand the emotional struggles you go through and will go through. Stay Strong!
Thank you for your reply and for your kind words!
DeleteYou moved me to tears. God bless you!
About Nivolumab. It's strange, but basically I find a lot of negative feedback about the brain edema caused by it. It's good that in your case there was no such thing.
I again talked to the doctor about using Nivolumab.
ReplyDeleteHe suggests starting with 100mg / 2 weeks, then 200mg / 2 weeks.
He says that the side effects can be controlled by drug cancellation, that the effect of Nivolumab is in 20% of patients and this effect is very good.
Also, the doctor said that to two patients he injected 40mg of Nivolumab directly into the bone marrow!