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Alternative treatments that helped Chris Amundsen become a long term survivor of Glioblastoma Multiforme (GBM)
Alternative treatments that helped Chris Amundsen become a long term survivor of Glioblastoma Multiforme (GBM)

Why did we do the docuseries?

 

To get the word out…

When Chris was diagnosed we were told he had 3-6 months to live. We did not accept that timeframe. It was not in our nature to accept what we were being told. We decided to find a way to help ourselves and we found Dr. John Boockvar who refused to put a time limit on Chris’s life. He gave us the option of a study that would help prolong Chris’s life. Chris and I came up with the motto “Keep ahead of the technology.” We had no illusions of a cure. We did believe that if we could keep Chris alive long enough there could be a long term treatment or cure someday. We just had to keep him alive long enough to receive it. Chris did not make it to a treatment but that does not mean that someday, someone will not be the first. Chris maintained a positive attitude throughout the entire illness and that is a very important aspect to survival. Acceptance of your situation and a positive outlook. It’s hard to do…especially under the circumstances of GBM but the best thing you can do is try everyday to find some kind of joy in life and be grateful for the time you do have.

When Dr. Boockvar asked us to do the docuseries we agreed because we wanted others to see that you could be a long term survivor like Chris. By the time his second tumor came back we were 2.5 years into his GBM diagnosis. Remember, he was given 3-6 months at the hospital that originally diagnosed him. The average survival rate is 12-15 months. We knew showing our struggle would give people hope and I know that telling Chris’s story was not in vain if it helped people to find some kind of hope.

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Our Personal Treatment Decisions

When you are diagnosed with GBM, you must make your own decisions about how you want to handle it. You should decide if you want treatment or not. It is a hard choice because treatment and fighting GBM comes with consequences. Deficits will inevitably come at some point and there will be pain. How far you want to go with your treatment is a personal choice and remember that you can always change your mind. However, you do not have time to sit around and think for too long. It’s an aggressive cancer and you do not have time to wait and see. Also, if you want to do a study making a choice to do basic care can knock you out of certain studies, so you want to contact doctors immediately after diagnosis to see what your options are. Not all doctors know ALL the options. Do not assume they do. Also remember, medicine is a business and they try and get you to choose their study.

If you want to fight and try to keep ahead of the technology it is my opinion to find a study. Of course I am partial to Dr. Boockvar out of Lenox Hill in NYC. Don’t be afraid to travel to get treatment if you have the means to do so.

As a caretaker, after your person has left this earth you have regrets, its inevitable…its human nature. The one thing I do not ever question is choosing Dr. Boockvar and his team and choosing his studies for Chris. A lack of regret when choosing treatment is a big deal and it is a gift. Remember, you must find the positive in all things. Chris and I used to say “We have the best in the crappiest situation.”

Our personal choice was to combine western medicine with natural medicine. We researched for hours upon hours to find what we felt would be the best at home treatments. We wanted to hit the tumor and keep it weak. Again, long enough to stay ahead of the technology. Our strategy was that when we were doing western medicine we would give it our all. Supplements can interfere with chemotherapy so unless the supplement was meant to assist the chemotherapy we never combined the two.



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The Treatment

We chose to go with conventional treatment first. Based on the genetics of the tumor Chris did traditional chemotherapy for 6 weeks and radiation. From what I understand going this route could bump you from potential studies now, so before you decide to do this…you must make a decision about how you want to handle your treatment. This was the standard treatment when Chris got sick at the time and you could not do a study without first doing the standard treatment, so this is what we did. Like I said, technology changes all the time. If you already did standard treatment, don’t worry. It doesn’t knock you out of all options and some studies require you to do basic treatment. This is why you must accept reality quickly and contact different neuro-oncologists immediately to find out your options. You know who I suggest already…Dr. John Boockvar.

Chris then participated in a study called “Super-Selective Intraarterial Cerebral Infusion Of Temozolomide (Temodar) For Treatment Of Newly Diagnosed GBM.” It was a phase 1 study. In Phase I studies, you get the medication. In Phase II studies you get the medication. In Phase III studies you can get a placebo. We NEVER considered a Phase III.

Chris then completed one year of maintenance chemotherapy with Temodar. One week on, three weeks off.

When Chris was not doing his maintenance dose chemo we used natural remedies. We did a lot of research. We watched the documentary “Surviving Terminal Cancer” and read the book “Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails.”

Again, I am not a doctor. I am a Family and Consumer Science teacher and Chris was a Mechanical Engineer. I am not one to give out medical advice. This is what we did to try and keep Chris ahead of the technology. I am not saying it was the right thing…but it is what we chose to do.

Cannabis

Cannabis-Indica strain-High THC.  It must be Indica dominant. I am looking into Indica Dominant THC/CBD 1:1 to see if it can help prevent some of the psychoactive effects for a family member who also has GBM. I do not know how it will would work yet.  Cannabis can cause anxiety and fast heartbeat which can be concerning for people with high blood pressure.  Chris asked his doctor for Xanax to help manage the side effects. It is generally known as Rick Simpson Oil.  I have made it using Everclear which is a little different than traditional RSO but is food grade alcohol and that is what I feel safe using.  It is suggested you make it yourself. I cannot suggest that you make it yourself but you should look up the RSO official website.

 It must be ingested.  It cannot be smoked.   There are studies that show cannabis cancer cells in-vitro and is being studied  in Israel and Spain. 

 Chris was taking a maintenance dose for years and we felt it was keeping the tumor at bay.  He wanted to stop the cannabis because he was having trouble with concentrating at work.  We disagreed about this. I wanted him to stop working or slow down but he wanted to work.  He stopped without telling me and the tumor came back.  We never got control of it again.  Once started, I would NEVER stop taking cannabis.  Most long term survivors online will site cannabis as one of the strategies they use to stay alive. 

Laetrile aka Amygdalin

Found naturally in bitter apricot seeds.  It is a treatment covered up by Sloan Kettering in the 70s.  Amygdalin can kill cancer cells but it may also kill other cells as well so manufactures usually suggest 2-3 seeds a day. 

Boswellia aka Frankincense

Has been found induce apoptosis in various studies.  Chris took it in organic pill form. He also took food grade essential oil under the tongue a few times a day and diffused it at night.

Diet and Exercise (if possible)

 Low sugar, low carbohydrate.  High leafy greens, eat a lot of cruciferous vegetables and if you want take a cruciferous vegetable supplement as well.  It’s a simple concept, cancer eats sugar…eat less sugar and starve the cancer.  Exercise because its healthy, help with depression  and because it will keep up your strength as the steroids destroy your muscle tone. 

Turmeric and Ginger

Has been found induce apoptosis in various studies.  Also, both have been found to be able to cross the blood brain barrier.  Both possess anti-inflammatory effects as well.  I suggest that they take both and if possible, a fermented version.  Dr. Mercola makes fermented versions and I myself take the fermented turmeric to keep my blood inflammation down which works beautifully for my own inflammation.  I do not have to take medication for my Rheumatoid arthritis because I can manage it naturally. This is one of the supplements I use.   When Chris would break from his diet or ingest any type of sugar (complex carbohydrates included) that they take a ginger and turmeric as it will travel with the sugar to the tumor site and hopefully induce apoptosis.  Side note: Black pepper can make turmeric work more effectively.

Melatonin

Reduces blood sugar, helps to starve the tumor.  Helps balance out the high blood sugar from the steroids.  Chris used the extended release form.  This is not a supplement. It is a prescription drug. You can get it because there is a new law called “Right to Try.” Terminal patients are given the chance to try any drug to keep them alive even if it is not approved by the FDA for that specific treatment. That does not mean your insurance will cover it…but guess what? Steroids…which you will most likely be on increase your blood sugar. Your doctor may be able to get you melatonin because the steroids have increased your blood sugar. Talk to your doctor.

Magnesium

 This is a supplement that Chris used an hour before radiation treatments.  “All the results demonstrated that magnesium may elicit protective effect against radiation induced brain injury by reducing calcium overload, improving redox and inhibiting cell apoptosis. Moreover, magnesium significantly down-regulated the protein or mRNA levels of NF-κB and ICAM- 1. The findings may provide references for the application of magnesium in clinic for brain injury induced by radiation.”

https://pubmed.ncbi.nlm.nih.gov/29366417/

GCMAF Yogurt

Tumors produce an enzyme called Nagalase that prevents the body from making GCMAF.  Of course, you cannot get GCMAF treatments so you have to ingest it.  You do not eat it like regular yogurt, and you do not make it like regular yogurt. You must follow the websites directions.

 http://gcmafyogurt.com/gut-critical-to-health 

Breast Milk

I wanted Chris to ingest my breast milk.  He couldn’t do it….it just grossed him out too much but if the person is open to it…  He did take cow colostrum.

Essiac Tea

 There are stories that this tea helps with cancer.  I have never known for sure.  There is a documentary on it.  Chris did take it at the time everyday for the first year of his treatments.  There are a lot of types of the tea out there but this is the only one that I have ever found that had the correct ingredients. 

https://store.renecaissetea.com/products/blue-moon-herbs-essiac?fbclid=IwAR3ToTzcpv1fmuFIaKXTv9zn8utyhcrUsAmg_Ymrj0w_S6g6ER22tTAG-3k

Other possible supplements that will help and that we did here and there:

To keep up immune system:

 Liposomal Vitamin D and K

 Liposomal Vitamin C

 Medicinal Mushroom blend:  I know chaga, shitake and lions mane  and turkey tail and Rishi mushrooms are used in Chinese medicine to increase immune system and fight cancer. 

 Probiotic with live cultures (refrigerated)

 L-Lysine-for immune system health and to prevent viruses.

 Coconut Oi for immune system health and to prevent bacterial and viral infections. 

Brain Health:

 Omega 3 fish oil or Flaxseed Oil

 Blood Sugar

 AMP Florcacel

 It is an aloe special processed to help with auto-immune issues.  It helps to bring down blood sugar.  I use it for my Rheumatoid Arthritis and my blood sugar issues. 

Alternative Treatments Continued…

Massage:

To help with the pain.

Hyperbaric oxygen chamber: Possibly will make cancer cells easier to kill with treatments like chemotherapy and radiation while also activating the healing process in your body.

Accupuncture /.com/gut-critical-to-health://pubmed.ncbi.nlm.nih.gov/29366417/

Final Thoughts

Make sure to find out if your tumor is methylated or unmethylated. MGMT methylation - This is short for O6-methylguanine-DNA methyltransferase indicates how effectively the tumour cells can repair the damage inflicted on them by certain chemotherapy drugs, such as Temozolomide.

There are some studies that are geared directly towards the different proteins and genetics of your tumor. Make sure you do your research on the studies.

Remember that disease is a business and every hospital wants your tumor to study. Don’t let your current doctor scare you from a treatment that may help you.

Understand your disease. Learn it. Don’t read the statistics…don’t be afraid of the statistics…they are just numbers. You are not a statistic. Be involved. Research…ask questions. Bring in a list of questions to your doctor…and if your doctor is annoyed by this get a new doctor.

Accept what is…accept reality…face it and leave denial quickly. You can be depressed and sad but you don’t have time to wallow in it if you want to fight. That’s the harsh reality but it is the only way you stay ahead of the technology and be a long term survivor.

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For Chris-My favorite person. I will love you forever.

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