Hi, my first post here so I hope I'm doing this right. My husband was diagnosed with GBM on June 13th of this year...on the day my baby turned 8 months old. One night when he was working late at home, he started having chills and feeling cold and started having a seizure in bed while we were sleeping. He had 3 seizures that night and went to the ER and a mass was detected on his scans in his right parietal lobe. He had surgery the very next day and the neurosurgeon said it was 99% removed. At the time, they detected something else on the scans in his right temporal lobe...(I believe it was his first scan at the ER) that showed something, but they couldn't give us a definitive answer of what it was. They said it could be swelling, but based on most recent scans, the NO said he thinks it's progression and that if it is, it's most likely inoperable and they will know for sure after chemoradiation is over. I'm scared to death about the new find, although he suspects that it's not as aggressive as the one that was removed. I'm not sure what he means by "progression" if it was there from the first scan and not as aggressive. Wouldn't it be more appropriate to call it as another tumor rather than progression from his first tumor? Am I not comprehending things correctly? I ask this here as I am never able to accompany my husband to his appointments as I have my infant son and another 8 year old son and I don't have anyone to watch them. I feel really helpless at times and focus whatever free time I have looking up what supplements and diets could possibly help him. My research, however, is often not thorough as I am constantly interrupted by an unsleeping baby and an active 8 year old. I'm hoping you wonderful members/contributors could help me out and take a look at the list of supplements I have compiled so far.... It's been a work in progress as my research evolves and I have taken out some, only to add others.
From what I can make out of his pathology report, my husband is MGMT unmethylated and IDH1 and IDH2 negative. My SIL, who has been taking him to all his appointments, has sent in for Foundation One report so we are still waiting on that.
But this is what I have so far for my husband. Please let me know if there is anything that is unnecessary as I feel bad that my husband has so many pills to take all throughout the day. Also if there are any I should add and if my dosage should be increased, etc. I would ever so appreciate it! I was attempting to put him on a Ketogenic diet, but I'm too afraid to attempt as he has already lost some weight. He went from 200lbs down to 185, which is still an average size, but he seems to have lost some muscle. I am waiting for my Wokvel Boswellia extract to come so I can add that to his list as well. If I add this, would it be safe to take out the Dex? Right now I am putting him on a mostly organic diet with fresh veggies/soy/chicken and avoiding nuts because of Omega 6 and sugars and white starches. I also wanted to add that my husband is going on week 4 of chemoradiation and has been getting good blood count results and has been able to work every day from morning till 4-5pm. Thank you so much if you are reading this!
Rx meds
Taken w/o food
Dexamethasone 20mg (1) 8AM
Famotidine 20mg (1) 8AM
Losartan 100mg (1) 8AM
Levetiracetam 500mg (1) 8AM/ (1) 8PM
Zofran (1) 8PM
Temodar (2) 9PM
Supplements
Taken before a meal:
Berberine 500mg (1) 8AM/ (1) 5PM
Longvida Curcumin 500mg (2) 8AM/ (2) 5PM
Resveratrol 500mg (2) 5PM
Taken w/o food:
Life Extension Milk Thistle 750mg (1) 8PM
Melatonin 5mg (4) 9PM
Taken with food:
Red Reishi Mushroom 500mg (2) B (2) L (1) D
Fucoidan 310mg (5) B (5) L (6) D
Mushroom Science PSK/PSP 500mg (2) B (2) L (2) D
Mushroom Wisdom Maitake D Fraction Professional Strength (2) B (2) L (2) D
Green tea extract 750mg (1) B (1) L (1) D
Omega 3 Fish Oil 1100 mg (1) B (1) L (1) D
Life Extension Pteropure 50mg (1) B (1) L
Life Extension Soy 135mg (1) B (1) L
Vitamin D3 10,000IU (1) L
Life Extension Mega Lycopene 15mg (1)L
Probiotic 46mg (2) L
True Veda Ashwagandha 300mg (1) L
Esther, Agreed. I really don't understand how they could call "something" in another region "progression". Progression would come from the original tumor. Are you in the U.S.? Where is he being treated? Are they considering Optune? Hang in there! (Others here will have a better handle on the supplement situation.)
ReplyDeleteYes, we are in the US and being treated at UC irvine. They said he could do the optune after his chemo radiation but there is also another trial that is opening up right around the time he will be done, so I guess we will see if he qualifies for that. Thank you for your comment... I guess we will just have to wait and see for the next MRI, but I literally drive myself crazy just thinking about that other area. I really hope it was just inflammation or something!
DeleteSorry to hear that you've joined our group.
ReplyDeleteTo answer your dex question, it's doubtful that you could stop it while he's going through treatment but absolutely keep on top of your doctors about reducing it. It's negatives are significant, as I've unfortunately learned.
And, to echo Jude, you should absolutely look into Optune if possible.
Thanks Logan for always being so helpful to me and for directing me here! You're right, I probably can't stop dex as they said there is still swelling and I think a pool of blood from surgery site? I'm not 100% sure on that one as that's what my SIL told me and she's not always accurate. That also scared me so I took out garlic supplements since I know it can thin out blood. They said he can do optune after his chemo radiation but there is also a trial opening up so we will see if he qualifies!
DeleteI would pick Optune over a trial as in a trial, there's always a chance you get a placebo whereas Optune, you know you're getting a treatment. With 99 percent resection, he's a solid candidate.
DeletePlacebo is only a concern in phase 3 trials and randomized phase 2 trials. I'd be most interested in open-label single arm phase 2 trial, or a single arm phase 1 trial with very good preliminary evidence.
DeleteOf course not all trials are created equal. There's only a minority that I'd get excited about. Any idea what therapy is being tested in the new trial Esther?
Well, I believe it's a trial for those with recurrence... So that will be another factor to consider when the time comes and they compare the MRIs. Hopefully there is no recurrence.
DeleteI would definitely add Chloroquine
ReplyDeleteI will look into it! Thank you!
DeleteEsther,
ReplyDeletebringing to your attention also Valcyte, and also cannabis oil. Depends on where you live (or well...)
Wishing you lot of strength in this fight, to you, your husband and whole family.
You are doing amazing.
Yes, he is doing the cannabis oil! Thank you so much!!
DeleteEsther, One other thought since you can't attend appointments. I assume you are receiving a copy of his visit reports, but if not that would be very helpful. There's no reason you and his doctors can't be closely in touch (electronically) even if you are unable to attend appointments.
ReplyDeleteJude, I don't know you personally but I feel I do after reading all of your posts. I think it's really wonderful of you to stay with us to help with your opinions. I just wanted to say, thanks.
DeleteAnd Esther, I was telling my daughter-in-law about your post and she reminded me we included another family member by phone for a couple of appointments. We just called her when the doctor came in and she could participate in the full discussion.
DeleteThank you, Logan. Finding Stephen on Cancer Compass was a Godsend and then he went on to start this amazing site. I felt blessed beyond measure for his accessibility, advice and/or suggestions. I hope he knows how much is he appreciated, but I'll just stick around to be sure!
Golly Jude, sure is kind of you to say so. I've certainly been feeling the love. I echo what Logan said, thank you for continuing to contribute to the discussions here! You're also very much appreciated.
DeleteYes, next time I am going to demand that they call me! I must turn on my water works as I have asked before and have been unsuccessful at my attempts ;).
DeleteEven though I am new here, I am feeling the same sentiments as Jude.... Godsend for sure and I feel so blessed to have all of you responding with so much support! It really is very uplifting to come here and receive this kind of support. Thank you all~~
Just want to reiterate what both said here about Jude and Stephen. I don't post often but I read every day. And I don't think I ever hit send on my post to u Jude and I felt horrible :-( as u were one I always read from the beginning on cancer compass and get such strength from. So glad u r still here. No words. I m not as eloquent a writer or great w medical jargon and terms as others so I learn more from others but I m still here and so appreciative. I also know when the time comes u all will b hear. And Esther, u r so in the best place getting the best advice. Don't ever doubt that.
DeleteDear Esther, I'm so sorry you have to join our group. Just to build on Jude's point can you make a list of questions and get your SIL to record appointments? also it should be possible for you to have a Skype or FaceTime call with your husband's doctors so you can ask questions directly. It's so important and don't worry about asking the same questions over again. I'm no expert but I don't think you should stop the Dex if he is still undergoing radiation, it will be needed to mange inflammation. However from experience, you do need to be aware of the side effects and when the time comes be careful to come off the Dex very slowly. Good luck to you all.
ReplyDeleteThank you so much! I have tried getting my SIL to record, but she accidentally deleted it once and I've asked to FT, but don't think my husband is comfortable with that. I've also texted a list of questions, which he never gets around to :( But yes, I need to continue to push. Thank you!
DeleteDear Esther,
ReplyDeleteThe psichological part of cancer is very much overlooked. I'm a GBM patient as well and I firmly believe that when your energetic body is ok there is no reason for your physical body to be sick. Besides everything you do which is all wonderful if you don't mind I'll recommend some literature which helped me a lot with finding my path for cure. My bible was and still is "Dying to Be Me" by Anita Moorjani, "The Power of Your Subconscious Mind" by Joseph Murphy, "You Can Heal Your Life" by Louise Hay. The most important think that cancer thought me was that I have in me all the answers in the world. I learned to listen to my own instincts and I'm the only person who makes desisions on how to treat myself. Of course my friends send me materials so that I can learn new things but the final desision is always up to me. Your husband needs to learn to listen to his instincts because he has all the answers. Ask him to listen on how he feels about a medication or a book his body will speak to him. The first reaction is the right one. There is a lot of mysticism in cancer and I believe that the Univers never sends a challenge that one is not ready for. Good luck to you you and your husband on your journey with GBM. Hope you'll find YOUR unique path to cure!!!
Jo Jo Hristova
Amen, Jo Jo, I am with you completely. This is out there on leading edge thought, but it's not just Louise Hay and Deepak Chopra any more. Two more books: Radical Remission by Kelly A. Turner, Ph.D., and Mind Over Medicine by Lissa Rankin, M.D. I am reading one now I can't put down: Breaking the Habit of Being Yourself by Dr. Joe Dispenza. What we know is nothing compared to what we have yet to know.
DeleteThis comment has been removed by the author.
DeleteThank you Jude for the recommendations. I'll definitely take a look at those books.
DeleteI received this morning this TED talk. Hope it will be of help to everybody.
https://foodrevolution.org/blog/video-can-eat-starve-cancer/?utm_campaign=frn16&utm_medium=email&utm_source=email-automated&utm_content=2060&utm_term=existing-email-list&email=jojittonyc%40yahoo.com&firstname=Jo+Jo&lastname=
Thank you for recommending these books and for the link! Hopefully, I can get around to reading at least one! I still have not found the time to watch "The Truth About Cancer", which my friend sent me. But I agree that each path is unique and it's not an exact science! I appreciate the recommendations.. Thank you!
DeleteEsther,
ReplyDeleteMy wife was diagnosed less than a month before your husband. I'm very impressed by the regimen you've put together--you've clearly done a great deal of research, despite the obstacles you've faced.
I don't see much of anything to recommend eliminating, and perhaps unfortunately, there's a lot one might consider adding.
The burden of swallowing multiple fistfuls of pills is not trivial. Keeping the pills to a minimum, but perhaps also smaller pills, may be worthwhile.
In the context of glioma, I was unfamiliar with fucoidan. As a polysaccharide, I would doubt it could cross the blood-brain barrier. However, some polysaccharides (PSP/PSK) may boost immune response. As temodar, radiation, and decadron all suppress immune function, boosting immune function is certainly worthwhile.
You may want to read Stephen's article on "re-educating the immune system"
http://astrocytomaoptions.com/re-educating-the-immune-system/
It's worth more than any of my words.
There's an opportunity to swap his Famotidine for Cimetidine. They'll do the same job of protecting his stomach, but cimetidine may have immune function advantages.
Also, melatonin seems to be substantially broken down in the process of digestion and absorption. Melatonin lozenges that dissolve in the mouth may give higher bioavailability. We use orange flavored ones from BotanicChoice that are not unpleasant.
You might consider celecoxib (Celebrex). I have Sherryn taking an enteric-coated aspirin daily, both for possible anti-tumor effect and perhaps to reduce the elevated risk of blood clots. Both of these agents should absolutely be cleared by your NO.
She's also on otc lansoprazole to try to reduce the acid-pump tumors use to thrive in their acidic/hypoxic environment.
The magnolia bark extracts honokiol and magnolol look promising to me:
http://www.ncbi.nlm.nih.gov/pubmed/?term=(honokiol+OR+magnolol)+AND+glioma
Finally, I understand your concern about ketogenic diet and weight loss. However, the impact during radiation treatment may be very large, based on animal studies. As this is a relatively brief 6 week period, I think it's worth pursuing, despite rather substantial weight loss.
Ahhh thank you for sharing your wealth of knowledge with me- which I, too, am impressed by since you say your wife was diagnosed only 1 month prior to my husband!
DeleteI had read about the aspirin, but since my husband takes ocycodone as needed (which is daily), I was a little hesitant to add the aspirin as he has had a history of ulcers and had an incident of stomach bleeding. I know quite a few of the supplements I have added may also cause GI problems, but just aspirin + ocycodone seemed a bit worrisome for me. Do you have any thoughts on that? I also know Celebrex can cause GI problems, so I was hesitant about that as well. I know there is no clear cut answer as all of these dugs/supplements are being added to my own discretion, but if you do have any thoughts on these, I'd love to hear them!
I am going to ask the dr about switching to cimetidine and will look into lansoprazole and honokiol/magnolol!
Thank you for your informative response and best wishes to you and your wife! I hope she is doing well and you are both staying strong on this difficult journey~
Also, can I ask how much of the lansoprazole your wife takes a day? Thank you!!
DeleteA history of GI ulcers probably rules out aspirin and probably celebrex as well.
DeleteWe're in a similar situation. You can contact me directly at stevemdfp4 -at- yahoo -dot- com
My inclusion of lansoprazole (prevacid) is based on my familiarity with the safety and availability of the agent. Dosing is an unknown, as the degree of penetration across the blood-brain barrier is uncertain, though I believe I came across an abstract implying that there is some penetration. For now, she's on 15 mg twice a day. We'll probably double that.
There's some concern in the literature that long-term use over years could increase risk of alzheimer's or certain GI tract tumors, but if she lives long enough to suffer such risks, that would be a huge victory. Short-term, it's very benign stuff.
"Wouldn't it be more appropriate to call it as another tumor rather than progression from his first tumor?"
ReplyDeleteThe word progression is often used in a more general way, to signify any advancement of disease, as opposed to other things that might show up on an MRI. In this sense they're just saying they think its tumor as opposed to edema,inflammation etc.
It's always a good idea to get second opinions from top neurosurgeons when a tumor is considered to be "inoperable".
As Steve mentioned, if there is a best time to do the ketogenic diet, it is during radiation, at least according to mouse studies. If his weight is still in a normal range for his height, it is probably worth it.
Many people require steroids during radiation, even if taking supplements like Boswellia. I know people who went through radiation without any steroids at all. Each case is different, but the general rule of thumb is to use the lowest dose of steroids that can effectively control cerebral edema. If dexamethasone can be tapered to a lower dose without adverse effects, it's usually a good idea to do so, under the guidance of the prescribing doctor.
It's probably not necessary to avoid all nuts - each type of nut has a different ratio of fatty acids. Coconut and macadamia nuts are quite low in omega-6 fatty acids, and as long as you're supplementing with omega-3 fish oil, these should be fine. The highest content of omega-6 oils is found in seed oils, for example sunflower oil, which is mostly omega-6. Tropical nuts are usually higher in saturated oils (omega-6 and omega-3 oils are polyunsaturated), and nuts are often higher in monounsaturated oils, such as hazelnut. So in general seed oils tend to be more of a problem than nuts, with regards to high omega-6 content. A major exception to this is flaxseed, which is significantly higher in omega-3 versus omega-6. Fish oils are a superior source of omega-3 compared to flax, as fish oil contains the long-chain omega 3s that the body needs, while shorter chain omega-3s in flax need to be converted to the longer chain forms, but not everyone can do this efficiently.
Losartan itself may help reduce cerebral edema, and there is a trial in France testing losartan for this purpose in brain tumor patients. However, telmisartan may have better blood-brain barrier penetration.
Famotidine may also have some beneficial effects on the immune system, as seen in breast cancer trials, although cimetidine has been researched more in relation to effects on GBM.
See also this page for some evidence for things that could co-operate with radiation specifically.
http://astrocytomaoptions.com/radiation/
It's clear you've managed to do quite a bit of research even while being a mother to 2 young children, good work!
Stephen! Thank you so much for all this information! I am going to see if his Drs can maybe substitute those two drugs for the latter you have mentioned and I'm going to check out that link ASAP! And thank you for the big compliment... Often times I have no time or energy to do any research (which is why my response on here is so late), but knowing that what time I did have was done productively/effectively makes me feel good. I want to thank you so much for creating this blog to make my research so much easier. I wish I could give you a big hug! Thank you!!
DeleteAnother thing for people to keep in mind is that grain-fed meats are typically high in omega-6 and low in omega-3, while meat from pasture-raised animals is higher in omega-3 and lower in omega-6 compared to grain-fed.
ReplyDeleteThank you for noting this differentiation! I kept that in mind as we were eating out tonight, along with your comment above about nuts and seeds :)
DeleteThis may seem like a silly quest Stephen but for the meats as rite now my sis husb is on the grain fed meat kick; r u saying it's better to eat from pasture raised meats? She's just started metronomic Temodar (believe 80 mg daily; does that sound right?) I need to dble check her older genomic report and when get her recent biopsy report I ll have some quest.
ReplyDeleteHi Kylie. I started checking food labels after reading Stephen's comments and I heard an article on BBC radio just yesterday where a nutritionist was explaining the benefit of grass fed due to the Omega 3 vs grain fed Omega 6. Better for all of us, not only our loved ones!
DeleteYes, every animal species has its own diet that evolution prepared them for, but ruminants like cattle are supposed to eat grass and green plant matter, but are fed grains in feedlots to fatten them up, contrary to their natural diet, which causes many health problems for them.
DeleteAs a rule, animals that eat seeds and grains will have a higher ratio of omega 6 in their fat compared to animals that eat mostly green plants, which increases the level of omega 3s in their fat.
So for example, free range chickens eating a variety of foods including grass will have a much higher level of omega 3s in their fat and eggs, while chickens fed only grain will have a grossly disproportionate amount of omega 6s in their fat. And as Anne said, this is a health matter for everyone, not just for those with cancer.
Hi Esther,
ReplyDeletea thought on the Ashwagandha is that the True Veda product seems to be a root only extract, while the cytotoxic component Withaferin A is mostly found in the leaves.
( http://www.ksm66ashwagandhaa.com/did_you_know.html )
Hmm... That link didn't seem to work for me. Is there a brand you would recommend?
DeleteI've left Ashwagandha out of my cocktail for the moment being as I haven't yet found any brand with high a content of Withaferin. Those I've seen either say nothing or they state a guaranteed low content. I think Stephen has mentioned the brand Sensoril as being based on both the leaves as well as the roots.
Deletehttp://nutragenesis.com/sensoril-optimized-ashwagandha-root-and-leaf-nutraceutical-extract-possesses-unsurpassed-efficacy-and-safety/
The Sensoril page however mentions "a full suite of health-promoting nutrients but with minimal levels of Withaferin A (standardized to ≤0.5%)". I have no idea if the content of less than 0.5% Withaferin A would still be enough to provide any benefit. Maybe Stephen can fill in?
I highly doubt that Sensoril would have any direct activity against the tumor cells, I consider it more of an immune supporting agent. Withaferin A on the other hand has direct activity against cancer cells, but as far as I can tell no clinical testing has determined a safe dose of this for humans.
DeleteHowever, a company called ImStar has chosen a compound they call IMS-088, a withaferin A derivative, as their lead drug candidate for Lou Gehrig's disease.
http://imstartx.com/news.html (see Jan 2014 article, second from top).
It doesn't sound like this has made it to clinical trials yet.
http://www.accel-rx.com/newsstory/accel-rx-and-bdc-capital-invest-in-imstar-therapeutics-a-canadian-company-developing-therapeutics-to-treat-als/
Hi Stephen, an idea for the non-pharma list.
DeleteWould it be possible to add a "purpose/target" column? I.e. immunesupportive vs anti-tumor and so on and maybe a ranking which ones you find most->least promising among the agents in the list?
Peter, I've incorporated your suggestions into the non-pharma list (folder 0, Brain Tumor Library). I haven't completely filled it out yet, but the requested columns have been added.
DeleteGreat job, thanks!
Delete