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Wednesday, April 18, 2012

Could You Be a Brain Cancer Survivor?

 The Dreaded News You Don’t Want to Ever Get
I am the father of a brain cancer survivor. Unknown to my son, my wife, and me our experience with brain cancer was to start in late 2008 when our 27 year old son said he was having headaches thinking it was a sinus condition. By December 2008 his headaches were so severe that he couldn’t get out of bed. He had just started his university teaching career and thankfully was able to complete his first semester of teaching even with much concern about his health. By mid December 2008 the headaches were so severe that when he telephoned us from Philadelphia we advised him to go immediately to an emergency room. He lived close enough to the hospital that he chose to walk there. Can you imagine your child or yourself walking to the emergency room at night in a major city down town with a large brain tumor?

Good News and Bad News
The BAD news is that our son was eventually to have 3 brain cancer removal surgeries, 6 weeks of radiation, and a year of chemotherapy with the prognosis of surviving one and one half years. The GOOD news is that he is back to excellent health, has had clean MRI’s since his last surgery, and is now 3 years past the date his tumor was found. If you’d like to find out what we did that we think has prevented the return of more cancer, please read on.

The Hospital Emergency Room
So to continue our story, the hospital emergency room CT scan showed a large left frontal lobe tumor. He called my wife and me at our home in Georgia to tell us they had just diagnosed a large brain tumor. Since our son had always had remarkably good health, my wife and I were shocked. It was so unexpected. Then feelings of fear and panic started to grip us because we needed to figure out what we could do to help him but knew nothing about brain cancer. I was 57 years old and had never experienced the depth of fear and panic that sprang up in me at that time. I couldn’t believe that one of my children was diagnosed with such a dreaded disease. My imagination ran wild.

The First of Many MRI Scans
He returned home several days later at the end of December 2008, and we were able to get an MRI done on New Years Eve 2008. We met with a neurosurgeon the next day. He showed us the MRI on his computer and told us our son would need surgery causing us more worry about his future quality of life.

Could Nutrition Alone Cure Him and Kill the Tumor?
Because I had attended a talk 6 months earlier by a man who operated a health institute that specialized in nutrition and raw foods I knew that some people were healed by nutrition only, which I presented to my son. So we were able  to take him there immediately for their 3 week program. He did very well there, and they were very happy with his health except for the tumor. Their oncologist told us he thought our son should have surgery immediately. So we returned home and started to do research urgently. We hoped that the nutrition would kill the tumor. By February 2009 we knew we needed to visit neurosurgeons.

Brain Surgery
His first surgery was on 2/27/2009. He was in surgery for about 6 hours. The wait was very stressful for us. The surgeon had prepared us so that we knew that not everyone wakes up after brain surgery - EVER.  When it was over the surgeon told us surgery went very well and that they were sending the tumor to have it identified. They wanted to be careful to get it right. It took over 2 weeks to get the results. That was a difficult 2 weeks. It was determined to be a grade 3 anaplastic astrocytoma and was “very large and measured 7 by 8 centimeters”. This type of tumor sends out “fingers” which make it impossible for a surgeon to know how much of the cancer he was unable to remove. Before surgery the surgeon was concerned that the tumor was too close to the speech center and that he might not be able to remove all the cancerous tissue he’d like to get. This tumor type also makes it difficult for the radiation oncologists to know if they have irradiated the brain in the necessary areas to the necessary degree to reach and kill any cancer cells left by surgery. To add additional worry we were told by one of his doctors that this type of tumor usually returns and would contain some grade 4 cancer cells and be called a glioblastoma which would be the type of tumor U.S. Senator Ted Kennedy was found to have several months earlier. That would be the worst case scenario and actually the one to be expected.


Could Radiation and Chemotherapy Be Avoided?
We still wanted to avoid radiation and chemotherapy so some time passed as our son tried to use really good nutrition, but the tumor returned, so a second surgery was done in August 2009. We continued our research and found a doctor who used a protocol that was somewhat successful for brain tumors so we followed it for several months. It was very expensive and it failed. So, our son decided he would complete the remainder of the “standard of care” which was radiation and chemotherapy. Apparently to be eligible for most Food and Drug Administration trials a person must have failed at least 2 of the 3 parts of the standard of care. Our son felt that if he completed all of the standard of care treatments, he would be most eligible for any FDA trial that he might need if everything else failed. We met with a radiation oncologist in January of 2010 to begin radiation and a MRI was done. The tumor had returned again so he was advised to see his surgeon before beginning radiation because most doctors want as much tumor removed before beginning radiation to achieve the best possible outcome. His 3rd surgery was done in March 2010. His 30 radiation treatments began in that month and ended in May. His year of chemotherapy (5 days of each month) began in April 2010. He did better than we expected with all his treatments and had very little pain and nausea compared to what we thought he might have.


Finally, HOPE and PolyMVA
Flash back to August 2009 5 ½ months after the original brain cancer diagnosis. I happened to find the PolyMVA survivor’s website, www.polymvasurvivors.com. Before then I had not found any reason to hope for my son’s long term survival. There I contacted the person who had the longest survival from a high grade brain tumor. In all my searching Mark was the only one that I could contact that had a really long term survival from a high grade brain tumor. That gave me some hope finally that our son might have a future. Mark told me that he had been using PolyMVA continuously for the last 12 years following his brain surgery, radiation, and (in his case very little) chemotherapy.


Cancer SURVIVORS and the Cancer Control Society
I didn’t know anything about PolyMVA, but Mark’s main and very urgent advice was that I should attend a meeting that was to take place in 2 weeks over Labor Day weekend in Los Angeles. The group that puts on that meeting every year is called the Cancer Control Society, and they’ve been helping people for about 52 years. Mark, the long term brain tumor survivor, told me in no uncertain terms that if there was any possible way, I must attend that meeting. I went and found there to be many legitimate reasons to believe that my son might survive his disease. It was a 3 day meeting and the majority of the speakers were M.D.’s each speaking for 30 minutes. There were a few authors, researchers, and naturopathic type doctors who spoke but the majority were M.D.’s, and several of them were from overseas and the Mexican cancer clinics. These professionals had been dealing with cancers for many years in many different ways(conventional and integrative), and I felt they had had much better success than the chances of survival my son had been given. My son took all that into account so in the spring of the next year shortly after his chemotherapy began, he started taking PolyMVA.  PolyMVA is a nutritional supplement which is the end result of many attempts to find the best combination of ingredients designed  to improve one's immune system, target cancer cells, and strengthen healthy cells. At the annual Cancer Control Society meetings there is an hour for cancer survivors to speak and tell their stories. Several of the cancer survivors that spoke had used PolyMVA during their course of treatment. They were surviving from cancer! I was stunned.


My Fear and Panic Begin to Subside – No More Cancer?
Our son completed his chemotherapy in April 2011. He is now (as of December 2011) in his 18th month of using PolyMVA and in the process of tapering down to a very minimal, permanent amount. He has had clean MRI’s showing no tumor since his last surgery in March 2010.  Since March 2010 he has had 3 month MRI’s, then 4 month MRI’s, and his next MRI is scheduled 6 months from the last one. His surgeon apparently now feels confident that the MRI’s can be spaced out at greater intervals. The fear and panic I described earlier has begun to subside, thankfully!

Current Status: How Is My Brain Cancer Victim Doing Now?
Our son has returned to Pennsylvania to “restart” his life after living with us for 2 years. God has been so good to him. He was able to get his teaching job back and even an additional teaching position at another of the Philadelphia universities. He appears to be happier and more motivated than he has ever been about a career and his future. He seems to have more energy than we ever remember, and he no longer seems to “sweat the small stuff” as much as he used to. He has regained all the muscle mass he had lost during the 2 years of his conventional medical treatments and more. He really looks better than he did before his diagnosis. He even regained all his hair lost from the radiation. When he returned to Johns Hopkins University Hospital for an MRI some time after the radiation was over, his surgical team was a little upset because they thought he still hadn’t followed their advice to have radiation. They were amazed that even after full radiation treatments, all his hair had returned! Considering all that he has had to live through, we are amazed at how his life has been affected by this terrible disease. He was given 1 ½ years to live. I am updating this in December 2011. If you measure from December 2008, the date of his original diagnosis, he has outlived his prognosis by quite a bit, and his signs of good health are on a trend line of constant improvement without any indication of further tumor growth. Thank you God for his recovery so far. He has no significant physical impairments or neurological deficits caused by the cancer! However, he wanted me to make it clear that he thinks he has an occasional aura related to 2 mild seizures he had between his surgeries and also feels like he has some minor short term memory loss that he didn't notice until after radiation treatments. Most importantly, I must give credit to God, our Savior and Healer, because at every critical point along the way there is no other explanation for our wonderful outcome except that God led us to information and people that allowed us to make the right decisions. We certainly didn’t know what to do!

WHAT ABOUT YOU?
Are you or a friend or loved one dealing with cancer? Do you know someone who is controlling or has beaten their cancer? Please post your story or questions so that others who find or follow this blog can benefit from your knowledge or experience. You can post your message or questions by clicking the word "comments" at bottom.

February 20, 2012 UPDATE
Today we got the fantastic news that the MRI done today showed no recurrence! That makes 2 years of clean MRI's! Praise the Lord Jesus Christ for His tender loving care!


1 comment:

morag said...

Thank you Ben for sharing your story - what a heroic family!
I am a 58 year old lady living in Australia - I have a malignant grade II astrocytoma, and have received 28 radiation treatments, which have stabilised the tumour. I was diagnosed in July 2010 after 'crash tackling' the door frame and splitting my head open. I'd had no warning, other than a headache a few days before, and was actually on my way out the door to work, when the seizure stuck. I've had mixed reactions from drs - one said it was operable, several said not. After much research, I have found that most food 'causes' of cancer are those which cause you to be acidic. The "cures" are those which make you alkaline, so I have come off dairy and sweet foods, and balance my healthy acidic foods with daily doses of chlorophyll,(which is what gives plant leaves their green colour. Another benefit of this is that I no longer have to take medication for reflux - the chlorophyll neutralises the acid!
I'm still well and healthy, and the tumour is still 'stable" (and my hair grew back soon after treatment). I hope this is of some help to anyone who needs it. Keep smilin! Positivity is a huge help.

Morag from Queensland, Aust