Further to a recent previous post.
3 months of TMZ 5/23 showed that chemo is not working for unmethylated GBM. The tumor is very active according to MRI comparison between July and September 2019. There was alot of swelling which is currently being reduced with 16 mg steroids per day in the past week. Speech has improved alot with this. Was told it is too close to previous radiation or surgery to have either done again.
2 weeks ago clonazepam was prescribed 10mg x 2 and Keppra increased to 1500mg x 2 and Phenytoin 300mg in the morning - all of this is keeping seizures, twitches and focal seizures away.
Oncologist is going to start IV Avastin today and stop all treatment - asked if it was pallatiative but answer no it is not pallatiative treatment yet. Thought it was unusual to go ahead with Avastin by itself and not combine it with another chemo treatment such as lomustine?
Have been following cocktail since during radiation treatment back in April 2019 which I posted about in previous post. This includes daily chloroquine (155mg active ingredient); celebrex 200mg; metformin 500mg x 2; Atorvastatin; ramipril; ranitidine 75 mg; mebendazole; melatonin 20mg.
Also the usual daily supplements of mulitvitamin; 16 strain Probiotics; PSK; Maitake D; ; Mushroom supplement mix for brain (lions mane 300mg; bacopa 250 mg; reishi 150 mg; gotu kola 130 mg; ginko 120 mg); curcumin (longvida); vitamin D; ECG; Milk Thistle; Berberine; Boswellia; Resveratrol; Omega 3-6-9; Soy Falvonoids (geinistein)
Wondering if anyone has any experience of just Avastin being prescribed? I am wondering what is even the point in doing avastin alone? Appears to have more side effects and very little extra benefits, or OS? I was optimistic that Richard Geiber had Avastin and low dose TMZ but that doesnt seem to be on offer to us? Or any chemo alternative?
Very disappointing TMZ stupps protocol + cocktail did not seem to work.
Feeling your disappointment and concern. There were times during my husbands treatment that he could not tolerate chemo and Avastin alone was used. It helped him tremendously with brain swelling and he was able to cut back a bit (at times) on the steroids. Avastin gave him some quality of life by improving speech and some day to day function. We also involved a Palliative Care doctor in the last year of my husband's life even though we were still working with Oncologist and trying chemo and study drugs. Working with the Palliative Care doctor created a nice balance when deciding on treatment options, keeping in mind quality of life needs. Sending healing light and love to you and all dealing with this challenging diagnosis.
ReplyDeleteAvastin + CCNU/Lomustine: My son, Dan, Age 49, Is 24 months from diagnosis, Unmethylated, IDH 1 & 2 non mutated (wild type) Glioblastoma. 3 subtotal surgical debulkings & following standard treatment, he was on pembrolizimab trial till it clearly failed last winter after 3+months with severe swelling & inflammation. Since MayJune been on Avastin every 2 weeks & CCNU-Lomustine every 8 weeks. So far he is doing well for the last 16+ weeks with minimal if any growth. We have him on a comparatively limited cocktail, with Diabetes drugs, Keppra, Bactrim (as long as decadron is over 1) High DHA Fish Oil 3+gm, Coriolus Vs, Bacopa Monnieri, Boswellia, Valganciclovir, Pterostilbene, curcumin, 20 strain Probiotic, selenium 200 mcg, zinc, & Melatonin 20 mg, Vitamin K-1, & Beta Glucans, 1, 3 , and Loratadine mg. So Far, So Good...
ReplyDeleteSorry to hear about your struggles. Its such a rotten disease to have to fight against.
ReplyDeleteAvastin alone has modest OS impact in some people by shrinking vasculature and somewhat starving the tumor of easy food supply. It also causes a strong reduction in swelling for some patients which can both provide seizure relief and allow reduction in steroid use (which in turn can improve OS).
Agree.
ReplyDeleteThere is a belief that Avastin gives progression-free, but not overall survival benefit, on the basis of two phase 3 clinical trials in newly diagnosed GBM carried out several years ago. These OS outcomes were confounded by the fact that many of the patient in the control group did receive Avastin at recurrence. If you only look at the patients who did not receive any second-line therapy, Avastin did give about a 3 or 4 month extension of median survival, in line with the progression-free survival results.
https://www.ncbi.nlm.nih.gov/pubmed/27006178
Avastin is no miracle drug, but certainly can have quality of life and possibly even survival benefit in selected patients, especially where nothing better is available.
The BELOB randomized phase 2 clinical trial (2014), showed a slight improvement in 9-month overall survival statistics when Avastin and CCNU were combined, compared to CCNU or Avastin alone, in the MGMT unmethylated subgroup. [OS-9 40% CCNU alone, 12% bevacizumab alone, 58% CCNU + bevacizumab]
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(14)70314-6/fulltext
A phase 3 trial (Wick et al 2017, EORTC 26101) did not find that CCNU + Avastin was superior to CCNU alone, but the combinanation wasn't compared to Avastin alone.
https://www.nejm.org/doi/full/10.1056/NEJMoa1707358
The reasoning used by the oncologist to use Avastin is probably something like "TMZ did not work, so lomustine is unlikely to, given his MGMT unmethylated status". But it could be worth discussing the BELOB results with the oncologist, and whether or not lomustine would be suitable in relation to his current blood counts and fitness for intensive chemo.
Low doses of daily TMZ 40 mg/m2 or less could have indirect antiangiogenic benefit even if not doing much against the tumor directly, although there is no high quality prospective clinical trial evidence to prove this, which is what most oncologists would want to see before prescribing.
Thanks for the replies. I am currently looking up antiviral drugs and potential drugs to add to the cocktail - CUSP9 type of drugs. I am a bit cautious due to the 3 types of anti seizure drugs: phenytoin, keppra and clonazepam.. He is in good health and his speech has returned back to normal and to look at him you would have no idea there was any illness issues. He will have his 2nd dose of avastin next Monday. We have been reading Facebook groups and people claim they had success from avastin alone. Again I know the odds are against us but it is good to know that people are still going several years after the avastin treatment.
ReplyDeleteIt is true that once the oncologist says decide to use a certain treatment, it is hard to not go along with it. There is still the option that they might add chemo drugs. Will have to see how it all goes.