Hi everybody and many thanks to Stephen for adding me to
this wonderful blog.
this wonderful blog.
I have some questions regarding my father situation and it’s
a bit embarrassing cause we don’t have detailed information about the tumor as
many of you have, so I wonder if someone could kindly help me to choose the
best probable cocktail for him while I know that it is just a shot in the dark.
a bit embarrassing cause we don’t have detailed information about the tumor as
many of you have, so I wonder if someone could kindly help me to choose the
best probable cocktail for him while I know that it is just a shot in the dark.
He is 69 years old and last year (March 2018) during working
with probably toxic glue he suddenly fainted out and later he had problem in
his stomach. We went through lots of colonoscopy and other procedures during a
year and he lost more than 10 kg. Finally (at September 2018) we had a MRI that
said low grade glioma (in the LT temporal)
is the first possibility. (I guess since his HDL and LDL cholesterol were 41
and 77 mg/dl in July 2018 the tumor was not aggressive at that time). We’d been
told that because of tumor location it is better to do nothing and just wait.
with probably toxic glue he suddenly fainted out and later he had problem in
his stomach. We went through lots of colonoscopy and other procedures during a
year and he lost more than 10 kg. Finally (at September 2018) we had a MRI that
said low grade glioma (in the LT temporal)
is the first possibility. (I guess since his HDL and LDL cholesterol were 41
and 77 mg/dl in July 2018 the tumor was not aggressive at that time). We’d been
told that because of tumor location it is better to do nothing and just wait.
(I am suspicious about
Finasteride pill that he took for 3 years for his prostate and we recently switched
to Terazosin)
Finasteride pill that he took for 3 years for his prostate and we recently switched
to Terazosin)
Then in December we had
the second MRI which shows a “51*47*24 mm heterogeneous mass with surrounding edema
and extension to hippocampus region and mass effect on the LT with mild mid
line shift”.
the second MRI which shows a “51*47*24 mm heterogeneous mass with surrounding edema
and extension to hippocampus region and mass effect on the LT with mild mid
line shift”.
Then we went through a
painful process to decide whether we should take the risk of surgery and
finally we decided not to (which I am still doubtful about it). After a stereotactic
biopsy which only says this:
painful process to decide whether we should take the risk of surgery and
finally we decided not to (which I am still doubtful about it). After a stereotactic
biopsy which only says this:
Sections reveal fragments
of tissue including an astrocytic neoplasm. The cellularity is high. The cytologic
atypia include unclear hyperchromatism and some pleomorphism with scattered
cells having larger more hyperchromatic nuclie, occasional multinucleated. There
is rather extensive necrosis with prominent vascular and endothelial
proliferation.
of tissue including an astrocytic neoplasm. The cellularity is high. The cytologic
atypia include unclear hyperchromatism and some pleomorphism with scattered
cells having larger more hyperchromatic nuclie, occasional multinucleated. There
is rather extensive necrosis with prominent vascular and endothelial
proliferation.
- Diagnosis:
Astrocytoma, anaplastic
with necrosis (glioblastoma multiforme), left temporal and basal ganglia involvement.
with necrosis (glioblastoma multiforme), left temporal and basal ganglia involvement.
We started the temodal (120)+ radiotherapy (30 sessions) recently and now he
is in his second week.
is in his second week.
He is taking 1 sodium
valproate 500, had around 25 dexamethasone (finished now), 3 phenytoin 100, 2 ranitidine!,
and 1 Terazosin a day.
valproate 500, had around 25 dexamethasone (finished now), 3 phenytoin 100, 2 ranitidine!,
and 1 Terazosin a day.
I am trying to persuade
his Drs: to change ranitidine to cimetidine and maybe adding metformin (since he
had lost many weight I don’t know if they accept this and as someone mentioned
here metformin and cimetidine does not go well together. Am I right? But cutting
his carbohydrate too much is quiet hard so I still like metformin)
his Drs: to change ranitidine to cimetidine and maybe adding metformin (since he
had lost many weight I don’t know if they accept this and as someone mentioned
here metformin and cimetidine does not go well together. Am I right? But cutting
his carbohydrate too much is quiet hard so I still like metformin)
Also maybe chloroquine if
they accept.
they accept.
-
So the first silly question is that, if he goes well with the first cycle
can we say his tumor is methylated?
So the first silly question is that, if he goes well with the first cycle
can we say his tumor is methylated?
-
Do you think Turmeric curcumin NovaSol could work as a replacement for
Longvida? Because of his weak stomach I thought soft gels might work better. (https://www.amazon.com/Turmeric-Curcumin-NovaSOL-Bioperine
Softgels/dp/B018GQJQHM/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1533759320&sr=1-2&keywords=NovaSol%C2%AE&dpID=61EqNrydTdL&preST=_SX300_QL70_&dpSrc=srch)
Do you think Turmeric curcumin NovaSol could work as a replacement for
Longvida? Because of his weak stomach I thought soft gels might work better. (https://www.amazon.com/Turmeric-Curcumin-NovaSOL-Bioperine
Softgels/dp/B018GQJQHM/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1533759320&sr=1-2&keywords=NovaSol%C2%AE&dpID=61EqNrydTdL&preST=_SX300_QL70_&dpSrc=srch)
-
What would you suggest for such a vague situation for a cocktail or other
therapy? ( Ttf and vaccine are not available here)
What would you suggest for such a vague situation for a cocktail or other
therapy? ( Ttf and vaccine are not available here)
I know most of information I said are useless but I thought it might help for some better guess.
Many thanks in advance,
1. MGMT status only matters because it helps predict response to chemotherapy such as TMZ and lomustine. If the chemo is working, then it makes sense to continue using it, regardless of what the MGMT methylation results are or would have been had it been tested. But at this point the more powerful therapy is the radiation.
ReplyDeleteFrom my first website:
http://astrocytomaoptions.com/radiation/
It's a bit late now, but a higher dose of valproic acid/valproate could work well as a radio sensitizer. Lower dose might not be enough for effective radio sensitization. I've summarized clinical trial outcomes with valproic acid for newly diagnosed GBM combined with radiation in the article above.
Bioperine and Longvida are two different formulations, so not equivalent. I've been most impressed with Longivda and the documentation surrounding it, though Bioperine could have benefit as well. If he doesn't like swallowing capsules, the Longvida capsules could be opened and emptied into a beverage. I'm not sure if products containing Longvida are for sale in your country or could be ordered online? Other brands (including Bioperine) are certainly an option.
I can only give very generalized recommendations regarding cocktails. A while ago I made a spreadsheet available for viewing in the Brain Tumour Library on Google Drive (I will share this with you), in which I tried create some order and placed the agents I felt should be prioritized closer to the top of the list. The list is based on both published evidence of efficacy, as well as accessibility (cost, side effect profile, prescription versus non-prescription) and is somewhat subjective, representing my personal opinion. Especially without any genetic testing, this is the best I can offer.
The "cocktail" approach is extremely experimental, which is why nobody can say which protocol works best, esp. because every tumor is different. CUSP9 is a more defined regimen that is being tested in a trial in Germany, and there is also the Care Oncology protocol, which they claim has had good results in GBM, but I'm reserving judgement since they haven't published the data yet.
I’m touched beyond words! Many thanks. The last month was a disaster and now I feel more secure with your help. There are just some more questions that I appreciate if anybody could answer.
ReplyDelete-regarding cocktail and therapy, is there any difference between a low grade glioma that had turned to glioblastoma?
- is surgery still a possibility after the radiotherapy if by some miracle the tumor shrinks and responds to radio-chemo?
- regarding your suggestion and of course while knowing that I am the only one responsible for this cocktail, I will add longvida and boswellia to my father’s pills as soon as possible. And I will fight for taking prescription/ permission from any kind of doctors here! Please let me know if you have any suggestion.
- Substituting 3 phenytoin 100 for 1 (or 2) Levetiracetam 500
2 sodium valproate 500 instead of one
2 cimetidine 400
1 Celecoxib 200
Propranolol (40mg)
? Riluzole
1 Melatonin 10g
1-2 Metformin 500
Regarding secondary GBM (one that evolves from low grade glioma) the most important question is about IDH1 status (mutant or wild-type). But at his age, more often than not a "low grade glioma" is an underdiagnosed GBM and usually having all the genetic characteristics of a GBM. This tumor probably should have been treated as a GBM upon discovery. A brain tumor with an IDH1 mutation might be treated differently, but at his age the tumor is not likely IDH1 mutated (this is most common in young adults in their twenties to forties).
ReplyDeleteYes surgery can be performed after radiotherapy dependent on factors including tumor location. Many patients undergo a second resection at recurrence after first-line therapy.
Regarding choice of anti-epileptic drugs, first question is whether he has a history of seizures or is he being given phenytoin preemptively rather than out of necessity. Second question is which drugs might also have anti-tumor or radio- and -chemosensitizing properties. With regard to this second question, I would tend to emphasize higher dose valproic acid (Depakote) during radiotherapy, and levetiracetam (Keppra) during monthly chemo cycles as it may have the ability to inhibit MGMT expression.
Most of those drugs are fairly common GBM cocktail drugs, except for riluzole. I haven't heard of anyone trying riluzole as an anti-tumor agent, though there has been some in vivo evidence supporting it.
Hi again,
ReplyDeleteI really need your help!
Just few hours ago, I was very satisfied with the possible cocktail for my father, but all of a sudden I came to a crossroad! I was going to emit phenytoin that was prescript for him. But now I am terrified that since he did not have any surgery and the size of tumor is quit big (51*47*24 mm) the matter of edema might be more important.. so maybe we cannot rely on boswellia and celebrex effects as much as other people here. and apparently phenytoin should be taken with dexa to reduce its negative impact.
do you think this fear is reasonable? I mean, should I take the issue of oedema more seriously than other cases reported here?
do you have any suggestion for the dosage of phenytoin,if I manage to reduce the dexa into 2mg/day or 4mg/day? my father is taking 3 phenytoin (100mg) each day right now.
Many thanks in advance and I wish I could somehow participate in this blog more usefully rather than just asking questions once in a while..
wish you all the best
I can't comment on phenytoin reducing negative impacts of dexamethasone, I've never heard of this usage before. My guess it has something to do with this:
Delete"Phenytoin and dexamethasone are administered prophylactically in combination to prevent potential central nervous system complications seen in patients with head trauma and metastatic brain disease."
https://jamanetwork.com/journals/jama/article-abstract/401043
I can say that phenytoin is rarely used for brain tumor patients in North America, at least since levetiracetam became the go-to drug for seizure control. In the six years I've been doing this I've only heard of three patients being put on phenytoin, and two of those were in countries outside North America (where I live). All three of those patients were also on levetiracetam and were using phenytoin as part of an anti-seizure cocktail. My impression is that phenytoin is much more likely to be used in places where newer drugs like levetiracetam are not as readily available for whatever reason.
The matter of edema is very serious, and in many cases there is no substitute for corticosteroids like dexamethasone (except for possibly Avastin). But as far as I know it's not necessary to use phenytoin for edema control - it's an anti-seizure drug.
One thing to be aware of is that phenytoin is an "enzyme-inducing" antiepileptic drug, which means it can affect the metabolism of other drugs, and this is one reason it has largely been replaced by drugs such as levetiracetam and lacosamide for seizure control in brain tumor patients. So if he goes off the phenytoin, the dosage of other drugs taken concurrently might need to be adjusted.
Drugs.com says
"MONITOR: Phenytoin and other hydantoins may induce the CYP450 3A4 hepatic metabolism of corticosteroids and increase their clearance and decrease their half-lives, possibly reducing their therapeutic efficacy... Some corticosteroids have also been reported to cause increases or decreases in serum phenytoin levels; however, data have been inconsistent.
MANAGEMENT: Patients should be closely monitored for clinical and laboratory evidence of reduced corticosteroid effects and changes in phenytoin concentrations during concomitant therapy. Some patients may require increased corticosteroid dosages."
Anti-seizure drugs sometimes require a tapering down period rather than stopping abruptly. Also he would need a prescription for a different anti-seizure drug to replace the phenytoin, especially if he has a history of seizures. This can all get kind of complicated and best done under doctor supervision.
Do you have any advice about using Fucoidan and Agaricus Blazei against GBM ? Can we use them with Curcumin, Pterostilbene and Honokiol ? Thanks
ReplyDeleteWhen my husband had his first resection in Seattle, they put him on phenytoin while in the hospital as a precaution. He did not have a history of seizures. He had a terrible reaction to it so we are not a fan. Interesting that rarely used in US.
ReplyDeleteCandy
Thanks for sharing this. I cannot imagine how would I survive this situation without this blog.
DeleteBest luck
Thanks Stephen,
ReplyDeleteyour comment gave me the courage to go in the battle with different drs today and I finally win! after some humiliation for interfering with their work, they all agree at the end! (some of them were more open and nice)
I will taper the phenytoin very fast since my father never had seizure, I've got permission for valproate sodium 1000 and even for adding metformin (which I am not sure yet)!
regarding the fact that I will add Boswellia (wokvel), longvida and (maybe) metfomin, and also since we will get rid of phenytoin, I dare to begin with 2 mg dexa and see what might happen with Edema...hope it works. (or maybe the oncologist would be kind enough to think about low dose Avastin, we'll see)
Here is the link to that article about phenytoin-dexa, which I don't care about what it says :)
http://sci-hub.tw/10.1586/ecp.11.1