My 72 year old wife was recently diagnosed with a grade 4 glioma / glioblastoma. Short history is one hospital wanted to dive right in and do surgery. A 2nd opinion initially ruled it as inoperable after a biopsy. Then they did some tests to determine viability of an "awake" surgical resection. But that all fell apart at the end and she really doesn't want to endure radiation / chemo (treatment worse than the disease).
Current treatment involves mushroom supplements (reishi, maitake, turkey tail and another one I can't think of), tumeric and cannabis. Also melatonin and vitamin D.
It's basically 2 months post-biopsy and overall she is doing fine. There are mood swings, issues in understanding time (how much time has transpired, sense of urgency, etc.) and the biggest issue is aphasia. Working with some software that focuses on that particular issue. Have not had much luck finding any online speech therapy sessions.
For a while lack of sleep was a big issue, but that seems to have improved the last few days.
Overall just overwhelmed. We don't have much in the way of a support system. Small family (both only children). My mom is the only parent alive and she's in her 80's and lives in another state. A neighbor has been supportive and helpful where she can, but that's about it. Additionally we are in central Florida which is a vast wasteland when it comes to any kind of support services.
The past 8 months have been awful. Before the glioma, she had a severe case of thrush brought on by overprescribing of antibiotics to deal with a sinus infection. There was also an incident with a sound system that severely affected her hearing in one ear. One of our cats passed in August. And this winter was the most severe we've had since being down here and we lost about half of our trees and a number of other prized plants we've had for 20+ years. Life just sucks right now.
We're getting by, but it's exhausting. Not sure exactly what I'm looking for here but just reaching out.
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rlwremo
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so sorry to hear, it really is tough but important to take care of yourself and not having a support network is hard for you.
My husband was diagnosed with gb4 in December 21, he has had an extended biopsy, awake craniotomy, chemo and radio. He is currently treatment free but we live from scan to scan enduring an emotional roller coaster.
We have changed his diet… reduced sugar and he has more nuts, esp pecans, blueberries, mushrooms and tries to drink more water. He has set up a fundraising initiative and this has been a positive distraction
we try and take each day as it comes, stay positive and enjoy the time we have together. I have some wonderful friends, to whom I offload. Try and find a coping strategy so that you can be strong for your wife.
Sorry to hear about your wife, diet is an important factor, which you have already started with. Include blueberries and pecan nuts, both have anti-cancer properties as does turmeric, which you are already using.
If you can, try and boost her immune system with some food supplements, in the UK, I use Higher Natures Immune Plus tablets, hopefully you might have something similar in the states.
I also recommend the drinking of ozonated water, which has extra oxygen, which kills cancer cells. I use a Sota machine, which is made in Canada. I have also been adding drops of 3% Food Grade Hydrogen Peroxide since 2010, when I was diagnosed with a grade 4 glio. There is a good document written in the USA about it's use - 'The Truth About Food Grade Hydrogen Peroxide', which you should be able to find on the internet.
Have you reduced your wife's sugar intake, cutting out unnecessary sugar where possible - sugar feeds cancer cells.
The Brain Tumour Charity website has a wealth of useful information and online support services, which you might find useful. You may also find their BRIAN APP a useful tool to also seek support and guidance.
Most importantly stay positive and believe than you can both get through you current situation. Also, do not forget to take care of yourself, which is so easy to do when you are caring for a loved one.
Take each day one at a time as with every step you take.
Wishing you the very best and sending you both 'positive waves'. 😊
so sorry to hear about your wife. It is tough eh. And yes, it is an emotional roller coaster
I was diagnosed with Glioblastoma last December and opted for craniotomy as it was considered operable.
started chemo and radio therapies in February. Have just completed 3 weeks. Now having a 4 week break before going on to cycle 2 of chemo.
Radio was no problem. But chemo left me feeling nauseous and tired. Now feeling much better as body has had some time to recover from the effects of chemo.
Scan in a couple of weeks to see what current situation is.
I'm going to try turmeric and see what impact that has.
I've also tried reiki which I find very relaxing and reduces stress. Acupuncture also that has relived nausea. Also going to try reflexology which is supposed to help feel more relaxed and less stressed.
I do hope your wife's journey improves. Stay strong. Stay positive.
My husband was dx with a Grade 4 Glioblastoma and underwent a right craniotomy. He did chemo radiation and TMZ. He is on his 2nd cycle of 5 days of TMZ. He also started Optune. Repeat MRI Doctors are unsure of deleted swelling and tissue necrosis vs tumor regrowth. Started Avastin generic form and getting 2nd infusion soon. Still on steroids and very tired. Every time he eats he’s tired. Any advice ? Every heard of a study drug from Minimax? Thank you very much
I just joined this group in order to reply to your post. I was looking at her supplement regimen and noticed that Berberine was not on it. You might want to consider adding berberine based on the following reviews and studies :
' The most typical malignant brain tumor, glioblastoma multiforme (GBM), seems to have a grim outcome, despite the intensive multi-modality interventions. Literature suggests that biologically active phytomolecules may exert anticancer properties by regulating several signaling pathways. Berberine, an isoquinoline alkaloid, has various pharmacological applications to combat severe diseases like cancer. Mechanistically, it inhibits cell proliferation and invasion, suppresses tumor angiogenesis, and induces cell apoptosis. The antitumoral effect of berberine in GBM is increasingly recognized. '
' We found that berberine effectively inhibited the migration, invasion, and proliferation of different human glioma cell lines, and increased the apoptosis rates. At the molecular level, berberine decreased the expression of Ki67 and PCNA, which was the likely basis of its anti-proliferative effect. '
A relevant study quote regarding the combination of Berberine/Curcumin :
' We found that co-treatment of SLCP and berberine produced more glioblastoma cell death, more DNA fragmentation, and significantly decreased ATP levels and reduced mitochondrial membrane potential than did single treatments in both glioblastoma cells lines. In addition, we observed that co-treatment inhibited the PI3K/Akt/mTOR pathway more efficiently than their single treatments. Our study suggests that combination treatments of SLCP and berberine may be a promising strategy to reduce or prevent glioblastoma growth in comparison to individual treatments using either compound. '
I just wanted to share this information with you and hope you may find it useful.
On a related note, Berberine has a very good safety profile as discussed here :
' In the abovementioned clinical treatment process, only a few patients have occasional abdominal pain, and drug safety is significantly higher than the original treatment measures.'
' Berberine is clinically safe and well-tolerated by the human body. Few adverse reactions are reported, and no negative effect is observed on participants’ diet. '
Berberine has a multitude of potential health benefits for many different health conditions. It is also a potent antioxidant and has anti inflammatory effects while attacking various cancers such as glioblastoma via multiple pathways and methods of action.
Btw, I like your choice of melatonin as it is also active against multiple forms of cancer through multiple mechanisms of action and multiple pathways, but an adequate dose is probably very important .
Hi there. I am 65 years old, and discovered my 4th grade Glioblastoma tumor last year. Had surgery on September 1st immediately after my kids and I discovered it. I had forgotten my kid’s names, and was having a horrible time talking. I’ve always been really good at eating organic foods and being healthy my whole life. I was totally against Chemo and radiation and thought I could cure it with herbs and vitamins, as well. I’ve also have been using a Berkey water filter for many years as well. The tumor grew back, and I had to have another surgery in January. Just started horrible chemo and radiation about 2 weeks ago. Not suffering any symptoms yet, but I probably will.
I exchanged all my clothing and my bed and etc into 100% cotton, thinking it might be safer. I have someone coming Wednesday to check my house for mold and any other symptoms that might not be healthy for my body to be living with. I wrote an email to the author of a book I’ve been trying to read for several months. He just sent me a long newer updated report that I’m trying to read and see what I should do. The author’s name is Ben A. Williams, and the name of the book is SURVIVING “TERMINAL” CANCER. He has lived over 25 years since he got Glioblastoma cancer. Also, I found an interesting short article online about Amy Pomykal. It has a list of herbal supplements that she uses or used. I think it happened along time ago, and she studied Ben Wilson as well. I think she lived a long time, but I don’t know if she’s still alive or not.
I’m also using a sauna once or twice a day. I read someone’s comment somewhere where he or she says they got rid of Glioblastoma from 104 temp of sauna and taking Frankincense. We also need to get 1/2 an hour of exercise everyday. If it’s too cold and rainy here in Seattle, WA (USA) then I use my mini trampoline for about 5-10 minutes.
Just got told by my oncologist that I won’t have another MRI until May. Ridiculous! So I’m going to look for another doctor, and see if my insurance will pay for another MRI in the beginning of March. If not, I’ll just pay for it. I want to know immediately if the chemo and radiation is helping or not.
Hi everyone. I apologize I haven't been able to respond sooner. I truly appreciate all of the responses to my initial post.
The last week or so has been pretty rough but I think we've gotten to a good balance for the moment. And this week I want to go back and re-read all of the responses (I did read them, just couldn't process them at the time).
Hi, I'm really sorry to hear about your situation. My husband was also diagnosed with this in January last year. He was unable to tolerate chemo so we had to look for alternative treatments. He has had good results with the Care Oncology Protocol. It's a system that uses 4 relatively cheap medications which are known to be effective on glioblastomas. Doxycycline, mebendazole, Metformin and atorvastatin.
And he takes herb teas. An equal mixture of wormwood, mistletoe herb, mugwort, centraury herb. 1.5gm in 200 MLS boiling water. Inspired by this research.
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