He has 3 tumors from 10mm to 40mm and seems to be inoperable. He already had 3 sets of TMZ and he is taking already some supplements I recommended based on my researches on Internet.
Here is his complete current treatment started 1 month after first diagnosis (time to perform biopsy) :
Biopsy revealed :
- IDH1 : negative
- FGFR3 : negative
- P53 protein : 15 - 20%
- no information on MGMT
MRI performed early december has show a slight size increase in the 2 biggest tumors, the oncologist says it is not alarming as the treament started one month after first diagnosis.
Currently my father resists well and tries to keep daily walking activity. Next MRI will be next month.
I just recently discovered the cocktail approach and your blog and I have some questions.
1. It seems many patients are taking Melatonin 20 mg/ day (forbidden in France at this dosage by the way) and that it could be of good help : sustains the immune system, anti-oxidant, anti inflammatory, leads to cancer cells suicide ... Should I add Melatonin to the treatment ? It seems also that Malatonin is non compliant with corticoids as it inhibits corticoids effects : what do you think ?
2. More globally I fear corticoids may have a negative impact on the different supplements. Is there a mean to sustitute it by anything else ? Is Celebrex an option ? If so at which dosage ? (the inflammation is still important, but decreasing).
3. Would you have any recommandation in other supplements or drugs ? PSK mushroom, Valpoic Acid, Metformin?
Thank you very much for your precious help.
1) I've never heard of a problem combining melatonin with corticosteroids, do you have a link with more info on this?
ReplyDelete2) It's usually a good idea to use the lowest dose of corticosteroids that is effective in controlling edema in the brain. There are some drugs that have "steroid-sparing" effects that may allow a person to reduce their normal dose of steroids. The angiotensin-receptor blockers (ARBs) such as telmisartan and other -sartans are one class of drug used for this purpose.
See for example https://www.ncbi.nlm.nih.gov/pubmed/22650322. "Steroid-sparing effects of angiotensin-II inhibitors in glioblastoma patients."
Boswellia has also been used for this purpose. I recommend Wokvel, though not sure if there are brands of Bowellia containing this in France. https://www.pureformulas.com/boswellia-serrata-extract-wokvel-180-capsules-by-progena.html
Celebrex may also help with this. Keep in mind many doctors advise against all NSAIDs, including Celebrex, in combination with steroids like dexamethasone, due to worry about gastrointestinal side-effects. This is likely much more of an issue with non-selective COX1/2 inhibitors such as ibuprofen rather than selective COX2 inhibitors such as Celebrex. 200 mg Celebrex once or twice daily would be a starting place.
There's no guarantee that even all these drugs and supplements could effectively replace corticosteroids, but they may be able to help reduce the dose to a minimal level (steroid-sparing).
Dear Stephen,
DeleteThank you very much for your answer.
1) According to French Health organisation, Melatonin may not be associated with corticoids as it may decrease the efficacy of corticoids. They refer to "Sajith S.G. and Clarke D. Melatonin and sleep disorders associated with intellectual disability : a clinical review. Journal of Intellectual Disability Research. 51-Part I:2-13.2007". "https://www.ncbi.nlm.nih.gov/pubmed/17181598". It is a recommendation only, "to be discussed with the practician".
2)Thank you for the indication. Wokvel Boswellia seems available for France.
If I understand well we could start to use Telmisartan and Boswellia extracts, and reduce progressively the dosage of cortisone. If every thing is fine, we may also delete cortisone and use Celebrex. Is that right ? Even during the 5 days chemiotherapy with TMZ ?
Thank you very much.
When you look for drug interactions in databases, combinations are sometimes flagged due to theoretical concerns, rather than having actual evidence of problems with the combination. I wonder if any actual negative interaction was observed with melatonin and corticosteroids.
DeleteI would be cautious about going off steroids, and go slowly. I think of things such as -sartans, Boswellia, Celebrex as potential steroid-sparing agents, allowing a reduction of the steroid dose, rather than as replacements. Headaches and other symptoms of edema and intracranial pressure will tell you if you're reducing the steroid dose too much or not, but in any case go slowly and under doctor supervision.
Hey all,
ReplyDeleteNeeds advice on drugs for recurre t anaplastic astrocytoma .
First surgery in february 2016 with resection of more than 95 percent
Followed by RT and concurrent temozolomide followed by 6 cycles of temozolomide till december 2016.
No signs of recurrenance till april 2018.
Recurrance in may 2018 followed by reradiation with concurrant temozolomide from 16th july 2018 till 16th august 2018 but disease continued to grow.
Not been on any treatment since then.
Currently he is bedridden mostly .
His biomarkers are
Unmethylated tumour
Microsatellite status - ms stable
Tumor mutational burden- tmb low(4 muts/mb)
IDH1-R132H
ATRX LOSS.
Pl suggest between lomustine or avastin or a cocktail or any other drug .