Tumor specifics: IDH1 mutant. P53 mutant.
Last MRI was July 26th. Inoperable brain stem GBM continues to be absent and the resected GBM (100%) in the left hemisphere shows no recurrence. More diffuse lower grade non enhancing tumor is stable since late last year. Concurrent use of Optune.
| Morning | Evening | ||
| Artemisinin 100 mg Caps 5 days on 5 off | 2 | ||
| Artesunate 50 mg caps 5 days on 5 off | 3 | ||
| Artemether 40 mg caps 5 days on 5 off | 2 | ||
| Fish oil with High EPA/DHA | 2 | 2 | |
| DCA ~17 mg/kg/day wt is 82 kg | 700 mg | 700 mg | |
| Longvida Curcumin | 6 | 6 | |
| Lycopene 10 mg | 1 | ||
| Melatonin 20 mg | 1 | ||
| Super Coriolus | 3 | 3 | |
| Maitake D Fraction | 3 | 3 | |
| Berberine 500 mg / capsule | 2 | 2 | |
| Vitamin D 10,000 IU capsules | 2 | ||
| Ultra Soy Extract | 1 | ||
| Selenium 200 mcg | 1 | ||
| Milk Thistle 300 mg/capsule | 2 | 2 | |
| Thiamin 250 mg | 1 | ||
| Pterostilbene | 3 | 2 | |
| Benfotiamine | 1 | ||
| EGCG (take on days with temodar) | 4 | ||
| Zinc | 50 mg | ||
| PRESCRIPTION MEDS | |||
| Temodar | |||
| Vimpat | |||
| Tagamet (200 mg tablets) | 2 | 2 | |
| Metformin (1000 mg tablets) | 1 | 1 | |
| Celebrex 200 mg tablets | 2 | 1 | |
| Sertraline (Zoloft) 50 mg | 1 | ||
| Minocycline (100 mg tablets) | 1 | 1 | |
| Chloroquine Phosphate 250 mg tablets) | 1 | ||
| Disurfiram (takes days you are on Temodar) |
Mike, why do you only take disulfiram with TMZ? I was thinking whether it is necessary to use it continuously and could not decide. Your son's cocktail looks almost like mine.
ReplyDeleteHi Amber
ReplyDeleteSince there is a theoretical possibility of negatively impacting the MGMT promoter methylation with disulfiram we decided to reduce the chance by taking it only on the days it is likely to offer the most benefit. Since the best thing we have going for us is the probable methylation (based on the finding his tumor is DIDH1 mutant), we don't want to risk negatively impacting this. Because of the possibility disulfiram has an impact on cancer stem cells, once finished will all rounds of TMZ, Jeremy will likely take disulfiram daily for a time.
Thanks Mike!
DeleteOh, Mike, don't you love those MRI results? I neglected to add our recent ones, but I will now. That would be a great addition to all the profiles and probably speaks more than anything else to what we are trying to accomplish. Congrats Jeremy & Dad! You are an awesome team!!
ReplyDeleteMike, how is Jeremy managing to keep up with Optune? I suppose it is very hard to have it on almost all the time! How long do you plan to use it for?
ReplyDeleteMatias
DeleteSorry for the delay in responding to you. Using this new format results in missing posts, but overall I like the format better. Anyway, Jeremy and his optune device are playing very well together. He has worked it into his life in such a way that he manages to average about 20 -21 hours of use per day. He dose better during the winter, but during summer he will take it off to play in adult baseball league. Otherwise he wears it when fishing, playing, working, whatever, without any problems unless its hot outside, then he has to get out of the sun since sweating will result in an alarm going off. He was told there is a new version of Optune coming out that is about 2 pounds in weight rather than the current 7 pounds. He is looking forward to that. Current plans are for two years of use.
Mike, You can have comments to this post (or any post) emailed to you if you click on the "Notify me" box below the comments box.
DeleteStephen. I tried that. Set up the information in Google but I do not receive notification. I will need to go back and take another look at it. Thanks.
DeleteMike, I didn't think we will have access to the new, lower weight device.
DeleteMost likely only for new folks in the future. Did Benkers indicate otherwise? Thanks, Candy
Candy
DeleteJeremy told me she said it would be available to him. At least that was his understanding.
The comments notifications probably won't go to your Google inbox. In my Google account they automatically get placed in the "Social" folder, which you have to scroll down to find.
DeleteCan't remember ....is he in the trial or in as an individual?
DeleteHe is not in a trial. We were very lucky to a have access to optune being this is Jeremy's first gbm occurrence. It is a secondary gbm, but being optune is only approved for recurrent gbm's we were very fortunate.
DeleteThen yes he probably will get the smaller unit when ready since he's not in the trial. That will be awesome cuz the larger one is one of the drawbacks.
DeleteBTW, way to go on the MRI!!! You guys deserve it!
ReplyDeleteThanks for sharing your son's list.
ReplyDeleteCould you let me know the brand as well as the strength of the Longvida Curcumin, Super Coriolus and Maitake D?
Thank you.
Tania
Hi Tania
DeleteJeremy is using 500 mg capsules of longvida curcumin. Takes 6 capsules twice per day. He is using a dose higher than most. We went with the higher route since even with the lipid soluble formulation of longvida, only a relatively small amount of curcumin crosses the BBB. Since we don't know how much is needed, we figured it might be a good idea to take a higher dose. The longvida comes from Vitamin Research Products. Super coriolus comes from JHS Pro and the Maitake D fraction is from Mushroom Wisdom and is the Pro 4x strength.
Michael, Is there any particular reason why you get your longvida cucumin from Vitamin research products as their cost for 60 capsules @500mg each is $59.95 and at Nutrivene 60 capsules of longvida curcumin at 500mg each is $35.95 and you can negotiate a cheaper price for bulk buys. as per link. They are both American brands and I am from Aus so I'm hoping the quality of Nutrivene is good.
Deletehttps://www.nutrivene.com/view_item.php?id=331
I have a wholesale account set up with Vitamin Research so I am paying around 29 per bottle. Longvida is of course a trade name for the curcumin formulation. Any manufacturer that pays for the right to use this formulation should have products of similar quality I would think.
DeleteHii mike may i ask why u are using the EGCG only when using the TMZ??
ReplyDeleteMy understanding is egcg shows benefit with tmz only. Even if there is benefit in the absence of tmz (Stephen any thoughts on this) the greatest benefit is with tmz and in an attempt to keep the overall number of supplements to a relative minimum, we would only use egcg with tmz.
ReplyDeleteDon only takes CCNU pill once every six weeks. Don takes EGCG every day. So Mike/Stephen, should he still continue to take EGCG since he's no longer on TMZ and should he only take on chemo days?
DeleteThanks, Candy
I have seen only one study showing EGCG has benefit for brain tumors, and this was a mouse study combined with TMZ.
DeleteHowever I've also seen human studies where no green tea catechins were detected in the cerebrospinal fluid after ingestion of 250 mL of green tea.
I've added both of the above studies to the Brain Tumor Library (preclinical folder, and pharmacokinetics folder, respectively).
A group from the University of Florida has developed a three nutraceutical blend of EGCG, curcumin, and sulforaphane, which they've given the name of "epidiferphane". This mix has prolonged survival in mouse models of glioma, and even greater benefits were seen when combined with a modified low-carb, high-fat diet (not as strict as ketogenic). These studies have not been published yet, except in abstract form at the 2014 SNO conference.
Is Jeremy taking dca on the same days with temozolomide? I read that those are synergistic. My brother never took it at the same time. We wonder if we should do so.
ReplyDeleteJeremy has been on DCA without interruption since late December 2014 or early January 2015. He is not rotating on and off.
ReplyDeleteMike, great to hear Jeremy's MRI's are looking good. Yeah team!! Did Jeremy get to see the new NO you talked about? How often does Jeremy have to see Benkers?
ReplyDeleteDon has done well. We just celebrated his 2 yr anniversary, especially when the NO gave him 3-6 mos after resection. He's had to take several "rests" from the arrays since skin issues got pretty bad. We will find out in a couple weeks how trial doc takes that. I hope to put them back on later this week. He's had to take couple of "rests" from the CCNU too due to platelets, etc. He looks great but the CCNU kicks his numbers. I wish he was back on TMZ since he's methylated.
Can't get the doc's attention on that. He definitely suffers from some cognitive issues but nothing we can't live with so feel blessed at this juncture.
Blessings to you & Jeremy and all the folks on this site, Candy
Hi Candy
DeleteGreat news about Don. Happy to hear this. Jeremy was seen at UCLA. We were scheduled to see Dr. Cloughesy but he was busy when we were there. So we saw Dr. Lai. Extremely personable doc. We really enjoyed him. He is neutral on the cocktail approach, but encouraged us to continue with it since Jeremy was responding so well. He sees Dr. Benkers every two months when he has an MRI at Swedish. His next MRI is Monday. We expect nothing but good news, but as we all know, MRI time is a bit stressful. I will post an update once we have the results.
Hi Candy,
DeleteCongratulations on 2 years, that is great news. I have found shark liver oil to help with platelets, seems to take a few months to have effect. Hubby takes 12 a day and depending on blood test I will at times half the dose for a f/n and then review.
Dear Mike
ReplyDeleteI saw in a previous post you posted that you paid only 200-300 euros for the optune device before your insurance company covered it.
Can you please tell me how you were able to get it for so low?
My dad really wants to use the optune device but they emailed us that it costs 21.000 a month or we need to wait for insurance.
I dont know if my dads insurance will cover i really really hope so. This is our only option since there are no other options left. Could you please give me your contact person with who you had contact with from novocure?
thanks a lot.
Kind regards,
Lycka
I asked Novocure the same questions, as a Canadian, and was told this:
Delete"The patient assistance program in the USA is only available to US citizens or legal US residents. As such, Canadians citizens interested in being treated in the USA, would need to seek coverage from their private health insurer, provincial health insurance program or self-pay."
It might be a different scenario in other countries where Optune is approved, but sadly here in Canada, it's not.
MRI Results
ReplyDeleteJeremy had an MRI today. Been 14 months since GBM diagnosis and 13 since surgery. Finished his last round of TMZ a week ago. There is no evidence of the GBM, either the one resected, or the inoperable brain stem. The rather diffuse non enhancing tumor remains stable. Initially showed substantial shrinkage, but for the last 10 -11 months its been stable. No edema, and other than some minor short term memory issues and occasionally coming up with the wrong word, he is neurologically intact. We have tweaked the cocktail a little, but very similar to the last one posted. Disulfiram is now being used daily rather than just with TMZ, and we have added copper. Hopefully the increased use of disulfiram will positively impact the remaining non enhancing tumor. If no improvement in a few months,we might revisit the use of IV vitamin C infusions.
We are blessed to have the time to keep looking for approaches that might result in a greater impact on the remaining tumor.
Good to hear that.
Deletewe also looking for immunotheraphy for Cornel.
And we continue with Tmz until 18 month.
Melinda
Hi Michael! I´m glad to hear about Jeremy doing so well! May I ask you why you are giving him copper? As far as I know, and according to Nutritional Solution´s research, it is supposed to stimulate tumor grow.
ReplyDeleteAll the best!
Matias.
Hi Matias
ReplyDeleteCopper appears to enhance the effects of disulfiram. For example, here is an abstract. Steven has also posted a study on the combination. Maybe this is the same study, I did not check. But here is what it says:
DSF potently inhibited angiogenesis both in vitro and in vivo. Cu improves the anti-angiogenic ability of DSF both in vitro and in vivo. DSF/Cu suppresses VEGF secretion through EGFR/c-Src/VEGF pathway.
Disulfiram (DSF) possesses anticancer activity by inducing apoptosis in vitro and in vivo in a copper (Cu)-dependent manner. DSF also potently inhibits angiogenesis, but the effect of Cu on this anti-angiogenic activity is unknown.
Here we show that DSF inhibits the proliferation, migration, invasion, adhesion and complex tube formation of human umbilical vascular endothelial cells (HUVECs). Aortic ring assays and Matrigel plug assays revealed that DSF significantly inhibited the formation of microvessels. Importantly, Cu improved the anti-angiogenic activity of DSF in all these assays, while copper alone had no effect. DSF/Cu treatment of U87 human glioblastoma cells resulted in suppression of VEGF secretion through the EGFR/c-Src/VEGF pathway. Reduction of EGFR phosphorylation disables recruitment of multiple Src homology 2 (SH2) domains, resulting in transcriptional down-regulation of VEGF. The role of EGFR/c-Src/VEGF pathway was further confirmed by using specific inhibitor, which significantly improved the anti-angiogenic activity of DSF/Cu. DSF/Cu also exerted increased anti-tumor effects on subcutaneous and intracerebral U87 xenograft models by reducing microvessel density (MVD) and VEGF expression. These results indicate that Cu improves the anti-angiogenic activity of DSF by targeting the EGFR/Src/VEGF signaling pathway, thus providing a rationale for the use of DSF/Cu rather than DSF alone as an angiogenesis inhibitor in clinical applications.
Mike, Really good to hear Jeremy is doing so well. Love hearing great MRI results.
ReplyDeleteIts been a while since I provided an update on my son Jeremy. In February, after 16 months since diagnosis of his GBM, Jeremy was found to have a recurrence in the occipital lobe. The original GBM was left parietal. There were three enhancing areas. Obviously a multifocal recurrence outside of the original tumor area is not a good finding. This was treated with SRS in 5 sessions, and he was placed back on Temodar 5/23. I modified his cocktail a bit by increasing the DCA and adding copper gluconate to 500 mg disulfiram. These were started prior to SRS and have been continued along with his current cocktail. His two month MRI shows the three enhancing areas have completely resolved. Obviously we are pleased with his response, but we have been told this response does not necessarily translate into longer OS. He continues on TMZ, Optune and the cocktail.
ReplyDeleteI talked to his NO at UCLA and Swedish about prescribing Nivo off label and both agreed to do so. Since Seattle is closer to us than Southern California, his NO at Swedish will be the prescribing doc. Nivo is a very expensive drug but we were able to obtain it without cost. Jeremys costs will remain substantial though since we are told he has to pay for the infusions out of pocket, which translates into $700 twice per month and airfare to Seattle twice monthly. Hopefully he will begin Nivo in the next week or two. I will provide periodic updates as his treatment continues.
The question now is what, if any cocktail drugs should be continued. Once we have this figured out, I will pass the information along as well.
Mike
Mike I am sorry to hear about the initial recurrence but glad to hear the following MRI showed a positive response. I feel certain Jeremy will get the best of care because you are a wonderful and wise advocate/father.
ReplyDeleteCan you tell me what Nivo is? Can you share how you were able to get it w/o cost at Swedish?
Keep us posted.
Blessings,
Candy
Hi Candy
ReplyDeleteNivo (Opdivo) is a PD-1 checkpoint inhibitor. Numerous trials are in progress using this drug as a monotherapy or in combination with other drugs. My understanding is the drug is very expensive, in the neighborhood of 140,000 per year. But Bristal-Myers will provide it free if you meet their criteria. Once someone will prescribe it, and insurance had refused to cover it, if income requirements are met, it can be obtained free. There maybe other criteria I am not aware of. Since only my sons wife is working and they are a family of 4, they qualified. My understanding is Keytruda, another checkpoint inhibitor, does not have income restrictions. This information was originally provided by Dr. Lai at UCLA. Since Swedish is closer to us than UCLA, I asked Dr. Benkers if she would prescribe it.
Hi Mike,
ReplyDeleteI´m so sorry to hear about Jeremy´s recurrence!
Please, don´t think in terms of OS, think of the long life you´ll have with your son, because you guys are doing all that is possible to combat this thing, and it isn´t going to take him down easily!
Best wishes,
Matias.
Hi Mike,
ReplyDeleteI'm so sorry to hear about Jeremy's recurrence, but heartening to hear that he's had a great response. All of us live with that possibility looming over our heads every day. Like you I'm a caregiver and when we have a setback we revaluate, update and put plan B into place. Jeremy is lucky to have you in his corner. Hugs
As promised, I am providing an update on Jeremys treatment. He received his first infusion of Nivo today at Swedish. As previously mentioned, Bristol Myers is covering the cost and Swedish is covering the cost of infusions (3000 per month for infusions). He is receiving Nivo outside of a clinincal trial. His NO at Swedish is fine with Jeremy maintaining the cocktail he is on which receiving Nivo. With any luck the various drugs and supplements that are part of his cocktail that influence the immune system in one way or another will act synergisticly with Nivo. He continues to be on the 5/23 TMZ schedule and continues using Optune. His next MRI is in June. With the last MRI showing a complete response to his recurrent GBM, we are hopeful good things will continue for him. I will provide updates as he progresses.
ReplyDelete