First let me thank you for this board, for your posts and stories, and for your inspiration in a time of such devastation. My father was diagnosed with a stage 4 GBM on Tuesday. It's in his frontal left lobe and impairing speech and some basic memory, but nothing else. Were getting second opinions on surgical options tomorrow and again hopefully Tuesday. First NS said no. I was in shock (diagnosis time) and didn't know enough questions to ask.
I now want him to take everything I can to help. His vitals, heart, kidneys, liver etc are all excellent. He's very fit, non-smoker/drinker. He is on board with whatever I suggest and will cooperate. He is reading Ben William's book but cannot actively participate in boards like this as his brain is impaired. Typing and thinking of words is severely impacted. My mother is a retired RN and will monitor blood pressure daily and blood glucose should we incorporate DCA or Metformin. That said, two scientists in my extended family rejected my suggestions and instead pushed the 'clinical trial' route - which I believe benefits the greater good of mankind in the long term but does nothing for the subjects. It's hard not to be discouraged by their emails of 'concern'. I believe they would have a different opinion were it their loved one. I've been following BW and Rich's doses from the cancer compass board as a starting point but unfortunately my background is in IT and not science. Here's what I want to give dad. Am I overlooking a drug/supplement that is crucial? Unfortunately I don't know the MGMT status or IDH1 gene status. I plan to ask tomorrow. Any suggested edits? So far he is tolerating everything I've thrown at him.
BETWEEN CHEMO SESSIONS:
- Accutane (13-cis-retin-acid), 160 mg/day, 14 days on, 7 days off DON'T HAVE YET - How to get in US??
2 WEEKS BEFORE CHEMO:
- 220 mg Tamoxifen, 2 weeks before chemo. DON'T HAVE YET
need aspirin daily and long walks for blood clotting
START WEEK BEFORE CHEMO:
- Verapamil, 600mg/day Blocks extrusion pump mechanism at BBB increasing penetration of chemo (BCNU)
DAY OF CHEMO:
- Viagara 60 minute before (BBB helper) Would this do the same thing as Verapamil? Any conflicts?
CONTINUE DURING CHEMO:
- Verapamil, 600mg/day
- Verapamil, 600mg/day
CONSTANT (+ during chemo/radiation):
- Brewed Green Tea
- cannabis (TCH + CBD)
- Celebrex (Celecoxib), 200mg/day (I want to up this to 600. Will push our Dr)
- Chloroquine Phosphate, 250mg/day (Dr said no, family member had a script)
- Coriolus versicolor extract PSK/PSP, 3g/day DON'T HAVE YET - On the way via internet
- Curcumin/tumeric extract: 800mg/day
- Decadrone 2 mg day (NS prescribed)
- Fermented Papaya Extract, 1000mg/day DON'T HAVE YET
- Fresh aloe vera (drink/mixed aloe, water, honey),1 cup/day
- Gamma-Linolenic Acid (GLA) Extract, 3g per day
- Green Tea Extract, 4g per day
- Keppra (NS prescribed. Not sure dose)
- Maitake-D mushroom extract, 1200mg per day
- Melatonin, 20mg/day
- Omega-3 Fish Oil Extract, 3gm per day
- Omeprazole (NS prescribed, not sure dose)
- Reishi mushroom extract, 2.5g per day
- Resveratrol, 20mg per day
- Selenium, 200mcg per day
- Silibinin extract, 2g/day
- Soy Extract, 5g per day
- Standard multivitamin capsules, time-release
- Tagamet (cimetidine), 800mg/day
- Vitamin D 5000 mg a week (Dr said this was the max. I want to increase to 10,000 a day)
Thanks for any help or encouragement. I'm incredibly grateful for all of you.
Annie
Annie,
ReplyDeleteThat is quite an extensive list and some of those ingredients are definitely more important than others.
My tendency would be to focus on agents that specifically add to or synergize with radiation during the radiation phase:
http://astrocytomaoptions.com/radiation/
Keep in mind that I'm not aware of anyone who has combined all these agents listed on that page together during radiation, so the safety of that is completely unknown.
Also keep in mind that Ben and Rich designed their cocktails 20 and 8 years ago, respectively, and they would both likely do things differently today. The reason I'm saying that is that not many people could afford or tolerate every possible cocktail ingredient that might be beneficial. The trick is to prioritize those agents with the best current evidence. I do my best to summarize the current evidence on my website Astrocytoma Options.
There are several alternatives to surgery for inoperable tumors, such as radiosurgery and NeuroBlate, which are both available outside of clinical trials, and also focused ultrasound which is only available in a couple early-stage clinical trials.
http://www.elekta.com/patients/treatment-information/treatment-centers.html
http://mybrainsurgeryoptions.com/directory/locations/
http://www.monteris.com/
http://www.insightec.com/ExAblate-Neuro.html
10000 IU vitamin D is probably fine for people in northern latitudes.
Thank you Stephen. Will check out those links and radiation drugs. First oncology meeting is Tuesday so will see what they suggest and share with the group for input.
ReplyDeleteStephen - I'm looking into the other surgery options you mention - thank you. You said some ingredients are more important than others. Without knowing genetic test results of the tumor, would you please comment on what you might suggest? Looks like cannibis, Depakote and Pterostilbene. Are there any on my list that you would recommend or omit?
ReplyDeleteAnnie,
ReplyDeleteOne drug I would recommend during radiation would be Celebrex, for two reasons:
1) Radiation causes an increase in prostaglandin E2 production, which has pro-invasive and immunsuppressive effects. COX-2 inhibitors such as Celebrex inhibit PGE2 production.
2) COX-2 and PGE2 are also thought to play a role in cerebral edema.
The problem is that doctors do not want to prescribe NSAIDs (such as Celebrex) to patients that are on dexamethasone (Decadron). According to drugs.com
"The combined use of oral corticosteroids and nonsteroidal anti-inflammatory drugs (NSAIDs) may increase the potential for serious gastrointestinal (GI) toxicity, including inflammation, bleeding, ulceration, and perforation. In a large, case-control study of elderly patients, those who used corticosteroids and NSAIDs concurrently had an estimated relative risk (RR) for peptic ulcer disease and GI hemorrhage of 14.6 compared to those who used neither. Oral corticosteroid use was associated with a doubling of the risk (estimated RR = 2.0), but the risk was confined to those who also used NSAIDs. It is possible that both categories of agents are ulcerogenic and have additive effects on the GI mucosa during coadministration. Some investigators have also suggested that the primary effect of corticosteroids in this interaction is to delay healing of erosions caused by NSAIDs rather than cause de novo ulcerations."
However, these studies of corticosteroids and NSAIDs were carried out in the 1990s, before the introduction of selective COX-2 inhibitors which have reduced risk of GI complications.
http://aje.oxfordjournals.org/content/153/11/1089.full.pdf+html
http://www.ncbi.nlm.nih.gov/pubmed/2012355
So caution is required when combining corticosteroids like Dex with NSAIDs, although the risk of GI complications (peptic ulcers) described in the above studies is probably not so high when using selective COX-2 inhibitors (ie Celebrex).
Another supplement people are using to reduce edema is Boswellia. Click on the Boswellia label on the side-bar to review what has been said recently.
The recent phase 2 trial of valproic acid (a component of Depakote) for newly diagnosed GBM led to good PFS and an outstanding median overall survival. In this trial valproic acid was taken beginning one week prior to the start of radiation and continued for the 6 weeks of combined radiochemotherapy. Strategically I like the idea of taking valproic acid during radiochemotherapy and then switching over to Keppra during follow-up monthly chemotherapy cycles. Some people on this blog have taken both of these anti-seizure drugs concomitantly.
Chloroquine phosphate (250mg daily) taken every day beginning with radiation led to positive survival results in a series of trials done in Mexico, though the chemotherapy used in these trials was BCNU, not TMZ. Chloroquine could be especially useful if the tumor is EGFR+ or EGFRvIII+.
Much of the other evidence on the Radiation page comes from animal studies (DCA+radiation, iron+radiation, pterostilbene+radiation, cannabinoids+radiation, ketogenic diet+radiation). It's up to each patient how experimental they want to be. All of the above are available without a prescription.
It's not so much that I would omit any item on your list, but I would prioritize and rank the most important ingredients. As an example, I haven't seen any evidence supporting the use of papaya other than a few in vitro studies (in vitro studies provide support to proceed to in vivo work in rodents or humans, but shouldn't be considered proof of efficacy in a living body).
http://www.ncbi.nlm.nih.gov/pubmed/23212988
I would also not use vitamin E during standard treatments, based on this study:
http://nop.oxfordjournals.org/content/early/2015/05/06/nop.npv008.abstract?papetoc
I would prioritize pterostilbene over resveratrol due to its superior bioavailability, but there's no reason you couldn't use both.
Oral GLA would also not be particularly high on my list, since the supporting evidence for brain tumors was a study in which the GLA was injected directly into the tumor bed.
ReplyDeleteSildenafil (Viagra, Revatio) and other PDE5 inhibitors alter the blood-brain barrier through a different mechanism vs verapamil. Another potential benefit of PDE5 inhibitors is the inhibition of immune suppressor cells and this use even has some human evidence.
http://astrocytomaoptions.com/re-educating-the-immune-system/
Thanks very much Stephen. Met with Oncologist today. She had a fit about Chloroquine. Also was not happy with my suggesting Viagara pre-radiation/chemo; I had read that it can infiltrate the BBB and was thinking he could take it an hour before TMZ. He has taken it before without ill effect. She called my dad 3 times to say "Someone is trying to give you Chloroquine... don't take it". I'm feeling defeated and doubting my efforts. The last thing anyone wants is to cause harm. Is there a good base cocktail mix to start with? We don't have genetic testing. She will order if we want to apply for a trial - which isn't my first choice of treatment paths. We've been recommended daily TMZ - I'll get the dosage and share later this week. Also have an appointment to see about NeuroBlate but not until later this month. This is so hard. I am no doctor. I don't want to hurt my dad.
ReplyDeleteYou don't have to say any names of individuals here, but what hospital is your father being treated at? Having a fit about the suggestion of a patient taking chloroquine doesn't sound very professional. And the refusal to do any genetic testing doesn't sound that co-operative either. MGMT methylation status and EGFR status should be the bare minimum testing for every GBM patient.
ReplyDeleteThere is always a certain amount of risk involved in the cocktail approach, and the outcome is never certain. However with the current standard of care, the known outcome is not good (understatement). Not being proactive enough is the bigger risk with GBM. I think most people here would agree.
It was a local Cancer center in Puyallup, WA. Today we're visiting the Seattle Cancer Care Alliance for a second opinion on NO. I'm curious if you would continue Chloroquine now or wait until radiation. I've added Milk Thistle and understand the long term risks with Chloroquine in vision and liver values, but agree 100% that the greater risk here is the tumor.
ReplyDeleteBrief update: Saw SCCA today and was very pleased. Dr was OK with everything I brought up and actually wanted to discuss it. Plan is now TMZ and Depakote as well as supplements above. If I get around to it I'll post a profile of what we're taking as a separate post. Hoping to get an opinion on NeuroBlate ASAP before we start chemo and radiation.
ReplyDeleteAlso they're ordering genetic testing for me (if they can - sample may be too small). to check MGMT. He said EGFR is likely (60% are) so Chloroquine will stay on my list. IDH1 mutation he said chances are less than 5% given my father's age.
ReplyDeleteHi Annie,
ReplyDeleteWish you good luck and strength the coming time, i think we need that.
4 weeks back my dad (62) had a brain-scan and they found some sort of pingpong ball in his head. An estimated 5,5 cm in diameter.
Last Tuesday there was the real diagnoses, conclusion a primary GBM Multiform and already had surgery and removed most of the GBM. It was in the form of a wake surgery while they did some tests while he was awake. As they tested a critical part of the brain which is used to know that you have a left body they stopped. So not all visible tissue has been removed but they did a good job.
Currently this weekend he is at home to test how he is doing it at home. He has become in a sort of psychosis after the surgery and still has to deal with that currently. First of all he was very Fearful and distrustful and even tried to escape from the Hospital as he was thinking he was in a Military Test facility where they did tests on him. Currently he's doing better thankfully.
The next step is a talk with radio/ chemo therapists next week on Tuesday so as i'am writing this in about 10 days. They would like to start with the therapy 4 weeks after the chat.
After the initial scan 4 weeks ago i did some research on brain- tumors and found out the most fit would be likely GBM, but still was hoping for some sort of infection or whatever better then GBM but unfortunately. I was digging more on this type of tumor and the possibilities and also watched the documentary "Surviving Terminal Cancer" seeking for some little hope. Also contact prof. dr. Halatsch and he send his emailaddress to contact him. Hope i can have a little chat with him soon on the situation.
Currently i'am trying to check the lists of supplements, but i cannot really getting grip of some of the terminology and have no clue where to start. My main language is Dutch and some words in English are sometimes hard to understand while it go's about medical thingies. We live in the Netherlands.
So i would love to get some more understanding on current treatments, experimental trails and compiling a list of possible supplements to discuss the possibilities with my father, the downsides, side effects etc.
I would love to try and keep in contact with you Annie while our paths feel some sort of parallel, please let me know how you feel about that.
Thanks for any help, i'm very grateful for all of you.
Jespar
Ps. My english could look a little struggled but as i mentioned we are Dutch.
Hi Jespar,
DeleteSorry about your dad.
We are Dutch also, My dad is operated on 26th april with full resection.
At cancercompass I have uploaded My dad's cocktail profile a couple times but I will upload it soon here as well.
Currently My dad is doing okay, he received 23 radiation treatments. He took Temozolomide for one week and has completely stopped with that.
Now he is doing Dendritic cell therapy in Germany, and he takes a couple of cocktail-meds.
At the time (and some time before) he received radiation he took a lot of cocktail medication for example:
Chloroquine(150mg), Celebrex (400mg/day),Metformin(2x500mg), Tagamet/Cimetidine(2x400mg), Verapamil (only couple days), Disulfiram(250mg) disulfiram he took only a week because we didn't know if he was methylated. Also supplements like maitake-D, Pterostilbene, kurkuma, alfacalcidol (vorm van vit. d).
-LYCKA
Jespar -
DeleteHere is the link to Stephen's site: http://astrocytomaoptions.com/
And the original thread I started with regarding dosing/drugs: http://www.cancercompass.com/message-board/message/all,74411,0.htm
I started reading that one and tried to follow what Rich and Tom discussed. Somewhere in that I was lead to this group.
Can you share me some info on below Dendritic cell Therapy probably, ie. website, telephone number ?
Delete"Now he is doing Dendritic cell therapy in Germany, and he takes a couple of cocktail-meds."
Thanks a lot.
You can email me about it if You want ? Just leave your email address and i'll send You some stuff
Deletegbmwar -at- gmail - com
DeleteThanks,
Jespar
Jespar - I am sorry to hear that you are dealing with this as well. Most of my information came from Stephen's site and a previous link/thread that I believe is linked here as well. It's late here but i will reply again tomorrow and forward you the links that I found most helpful. Others of course are welcome to chime in with additional information too. Yes, lets stay in touch. This board is more informed than anyone I've met with so far.
ReplyDeleteLycka -
ReplyDeleteHow does methylation status impact Disulfiram ? We don't know my dads status and I was going to request Disulfiram.
there is a theoratical possibilty that disulfiram could change methylated to unmethylated, so that's why we didn't do it for a long period because we didn't know if he was methylated or not, however Stephen once emailed me that he didn't believe it was an issue. But I don't recall it very good
DeleteCan someone please link me some good readings about what is: "MGMT methylation status and EGFR status should be the bare minimum testing for every GBM patient".
ReplyDeleteThanks everyone for being so kind and fast responding.
My own current status: Little tired and really feeling rookie currently.
Jespar
Are there any questions/ suggestions we may ask next week we have the radio/chemo therapist talk ? As Annie mentioned, she couldn't ask enough the first time.
ReplyDeleteThanks, Jespar