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PostPosted: Sun Jul 24, 2011 1:32 am 
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Joined: Sat Jul 23, 2011 7:47 am
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Location: Grass Valley, CA
I want to share my story of my brain tumor. I am a 39 year old male. At the end of Jan 2011 I went to the gym with my wife to soak in the hot tub & relax. I went into the sauna for about 5-8 min then soaked in the hot tub for around a ½ hour. The next morning I was getting ready for work and noticed a little “bump” on my forehead, mid line hair line. I really became nervous as I had been sick for some time after a gall bladder failed and was surgically removed in March of 2010. I had been on anxiety meds for a while and was really not sure what this “bump" could be. I went in to the walk in clinic to see the doc. He referred me to see a dermatologist to get it checked out as he thought it was a fatty deposit. The first dermatologist I saw said it was a “fatty lipoma” that he could remove for $380 dollars. I did not like his lax diagnosis so I searched out another doc to check it out as you could feel the skull had been compromised. After the second doc ordered an MRI in March 2011 I was blown away with a shocking result: Brain Tumor! My life was changed forever. I was now fighting for my life on many different fronts. The sad part is I am a father of 2 boys, Benjamin 17 years and Dylan 3 years old. I am also married to my beautiful wife Celeste. This was a crushing blow to our family who was already overloaded with problems from my gall bladder surgery a year ago. I feel so bad to be putting them through this awful life and turmoil. I was physically broken & in despair. I would in an instant take myself out if I knew it would make their lives better, but I really wanted my boys to have their daddy around for as long as possible. I would give my life to spare them of this pain. On April 20th 2011 I had a Golf ball size tumor removed from my skull. It was growing right in the middle of my head, pushing on both frontal lobes of the brain. Luckily, my brain was not compromised during the surgery and the doctor said he believes he got all of it, but wanted me to do radiation therapy to ZAP any cells that my be microscopic as fears it could spread. I had what seemed to be a good recovery from surgery and was back playing on the golf course within a few weeks. Doctors ordered a PET/CT scan on the rest of my body to make sure the tumor had not already spread to another organ or somewhere else. On May 31st I had my PET/CT and 3 days later they called me to say that they found 5 small nodules on my left lung, 3 upper, 2 lower. They were really worried about the 2 lower spots because of the uptake from the scan, but the spots were too small to tell. They wanted to do a CT/Angio scan to make sure what they saw was not a tumor. I had a friend who had tried ozone on a tumor on her spine that spread after her brain surgery 2 years ago. She had a tumor the size of a nickle on her spine that she shrank in two months with ozone funneling. Her MRI showed it was now gone! I was really not sure but after researching it, and talking with 2 people who had terminal diseases that used these remedies to treat themselves, I decided to get an ozone machine to do this at home on my own. I got my ozone generator and funneled ozone to my left chest area every day for 3 1/2 weeks. I went in on July 8th to get the CT/Angio Scan. 3 days later the nurse called me back and told me everything looked ok in my lung as now the 5 nodules that were there previously were RESOLVED!
I asked her to fax me a copy of the report for my records. She & another doctor I talked to said they do not see this happen very often, almost never.
I felt like the ozone had really worked and shrunk my spots. Since my scans had come back clean, it was now time for the external beam radiation to start & I was really scared to do this to my head. I just started last week on July 12th. I went 4 days to my treatments at 3:30 pm every day. After the 4th day about 3 hours after my treatment, I had a very odd episode of pain in my ear. I was driving down the road when it suddenly got really hot in my right ear, high pressure, & painful. It lasted about 1-2 minutes, then went away. I called the docs & they ordered an MRI for the next day. The MRI came back all clean. No tumor in resection area! So at this point the scans all say I am Cancer Free. I went back and did 3 more days of radiation this week as well.
My head seems to feel really heavy & gets irritated really easy. I am looking for any information on how i can keep this tumor and cancer from spreading & coming back. I have a pretty good diet of mostly fresh fruit & veggies, but still find it hard to keep my body alkaline. I use the PH balance stuff but still seem to be acidic. I wonder if the radiation is making me acidic? I have been eating watermelon & drinking wheat grass, eating almonds & really no meat or dairy, or processed foods that much. I will continue to do the ozone every day, ear insufflation for 3-5 min, funneling to my head area for 20 min a day, funneling to chest & abdomen for 20 min as well, just to maintain oxygen in system & flood the body with it. I am also going to try some isopathic remedies I have researched from a local clinic that uses, ozone, Neural Therapy, Hyperbaric chamber, Osteopathy, and cell therapy to help treat the cause & hopefully maintain a cancer free body. The clinic is the Biological Health Institute, in Nevada City CA! here is the website address: http://drbigelsen.com/Biological_Health ... /Home.html
I will post soon again with updates of my fight with this but I am really looking for anyone that has been diagnosed with Hemangiopericytoma and has been successful in keeping the cancer at bay. Looking to stay a brain tumor survivor...Peace & Harmony to all of us...


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PostPosted: Thu Sep 04, 2014 10:40 pm 
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Joined: Thu Sep 04, 2014 9:09 pm
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Hi
I had my first tumour (golf ball size) removed in 2007, and have since had another three.

For the last few years post radiotherapy, there has been no regrowth, though I still get an MRI every 6 months.

So touch wood there is no metastasis, but specialist says the statistics will say otherwise.

After my first op I had a clostridium (bacterial) infection where the tumour was removed, and as a result receive an intragam infusion every 4 weeks to support my immune system which doesn't really cope any more.

Other than that I work full time, do most other normal things, avoid special diets and so on. Though I do try and eat organic and fresh food, other than dark chocolate, strong coffee and other yummy things.

I also join in with a local brain tumour support group known as 'grey matters'. You can google our website or f/b page.

All the best

Graham


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PostPosted: Thu Sep 04, 2014 11:28 pm 
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Joined: Wed Aug 06, 2014 11:43 am
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Hi Graham,
Why skip on the yummy things? I take my diet seriously, I have a large brain tumor which I have lived with for many years now ( radiation induced by CT scan and high likelihood of coming back if removed, if that was possible, it would cause to much damage to surrounding tissue anyway, which also rules out gamma treatment ) , to control growth I don't eat cane sugar (cancer cells consume three times the amount of glucose than normal cells). To support my immune system I take a drink before sleep of pomegranate juice with ground garlic, ginger and turmeric.
Apart from that I eat a fairly normal diet keeping in mind trying to avoid cane sugar which is getting harder now, recently I have seen that they are even putting it in tinned vegetables like kidney beans.
I use no sugar products ( stivia and or maltitol ) for my yummy things, dark chocolate and coffee.


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PostPosted: Fri Sep 05, 2014 3:39 am 
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Joined: Sat Jul 23, 2011 7:47 am
Posts: 7
Location: Grass Valley, CA
Hello guys,
I would like to speak with you someday soon, as for me i have been clean and fine for a few years now but had some bad days lately, since Aug 3rd. with what seems like nerve pain on my scalp, but never had this type of pain before since my surgery in 2011. I had an MRI in Jan and all was good, but going in today as I am very anxious to find out what my pain really is. I'm just hoping to speak with another survivor out there to help with a few questions i have. Maybe we can share a few things from both sides. My phone number is 530-575-7186, if you would like to speak. I am going in this afternoon for my mri so lets hope my results come back clean tomorrow. Thanks for sharing your story, it really helps with the anxiety.

Peace & Health my friends...Bobby Blackmon


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PostPosted: Fri Sep 05, 2014 11:01 am 
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Joined: Wed Aug 06, 2014 11:43 am
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Hi BlackmonBoby,
I think my atypical (high growth) meningioma is pretty much the same as your Hemangiopericytoma (which is a type of meningioma with high growth level), if I have the surgery with cell biopsy, doctors can not provide final diagnoses until that's done. The position of my tumor seems to be also the same as yours. I also have a high risk of it spreading to my lungs.
The scalp pain you describe usually comes from vascular restriction, causes are usually from surgery and radiation, it can happen right after from the surgery and quite some time later. You may also be going a bit bald localized or all over which is another sign of vascular restriction. I get the scalp pain (which can happen anywhere on my scalp) as a result of surgery from a fracturing my skull (different location to my tumor) which also put a hole in it, unfortunately that injury may have caused my tumor as I had many CT scans with high contrast levels of radiation while waiting for surgery, I did not find out till later that I had the genetic vulnerability to radiation, my uncle (died from brain aneurysm) also had meningioma which he kept secret from our family. When I found out from my other uncle what had happened to my uncle, he became a valuable source of information which has helped me. I have spent thousands of hours reading everything I can about brain tumors and treatments from both conventional medicine and alternative.
What I want you to do most is to stop worrying, for many reasons. Be alert but be aware that we all tend to over react because of the position we find ourselves in, below is some musings I have had about our condition. Sorry I can't call you on the telephone as the cost is to much as I'm in Australia but ask any questions I will try to answer for you, but you remember I'm no expert and I'm suspect of anyone who makes that claim even if they work in this field.

The ozone and radiation treatment are making you acidic, I have looked into alkali ideas as a form of treatment and have found them to be largely incorrect, tumors can be acidic, alkali or neutral pH. The only way to tell which yours is by biopsy.
Ozone seems to have some good results but may cause heightened cell ageing.
Don't have any CT or PET anywhere on your body, only MRI from now on.
Get a second opinion on all medical advice.
The spice turmeric seems to do very good things to fight cancers and is recognized by conventional medicine.
Diet is very important, no packet foods, super foods are fine, avoid cane sugar for 2 reasons. 1) glucose feeds tumor growth 2) insulin, its full name is insulin growth hormone.


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PostPosted: Fri Sep 05, 2014 3:14 pm 
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Joined: Sat Jul 23, 2011 7:47 am
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Location: Grass Valley, CA
Hey Mike,
Thanks for sharing your story..i had a good MRI results today with no tumor returning, and my resection looks fine, so I am very relieved. but this must be some kind of nerve damage or something on my scalp along the scar tissue. What i did on August 1st was a Clay Poultice with Calcium Bentonite Clay..I had heard this clay is very good at getting radiation and pulling it out through the skin. My protocol was to do a clay poultice once a week for 3 months to slowly pull the radiation out of my head if I actually could. I had done this before where I take the clay and cover my whole head and face and back of my neck, (anywhere I think excess radiation from my treatments would be)and had major tingling and itching as the clay dries.
Then after 20 min I wash it off and i actually feel lighter in my head and a sense of being clean. But this time, 2 days later the symptoms started acting up like nerve endings exposed through the skin. It acts up if I move my skin by squinting or moving my eyebrows sometimes, but not all the time and not the same pain, or move a certain way or even wear a hat can make it sensitive. I put creams on it and that seems to temper down the symptoms a little so it makes me think it may be in the scalp area over the titanium mesh where they cut out my skull around the tumor. Im hoping these symptoms die down soon as I have any activities i want to do this coming fall.
Mike on your advice is good, I will not get another CT only MRI, I also always get more than one opinion on every issue that comes up, and I also live in a good community in Northern California where we have access to many alternative medicines and therapies. The ozone must only be done in low amounts and anyone using ozone therapy needs to be trained first before even thinking about it. It is very safe, but also very potent and must be instructed and used under the most strictest of guidelines and supervision. I use it to flood my body with oxygen in the ozone sauna, and funnel my ears for a min or two, maybe 3 times a week. I really stay away from GMO foods and eat mostly organic meats and fresh produce from the local health food store, even though the good food is pricy, disease is way more expensive. I also have a sweet tooth for Dark Chocolate!! and eat a half a bar every night, 75% cacao and only 7 grans of sugar...not too bad but i keep all other sweets to a very rare occasion. I also have a few other therapies I practice and will share when I have more time. It's nice to be able to talk about the issues with the pain and (strikes to the head) and get another view of it. My other question is when they first operated on your tumor, did they get it all out? and then do radiation to keep it from coming back?, and what was the time span between your recurrence and surgeries? How long did you go without a recurrence after the first surgery?

Thanks for any help and input you can share,
Peace and Best of Health


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PostPosted: Fri Sep 05, 2014 8:33 pm 
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Hi BlackmonBobby,
Glad to hear your MRI is clear. You are correct about the nerve damage along your scar, the pain/pinching feeling will move about and change in sensation as the area heels slowly over time but unfortunately it may never disappear, that's part of the risk when you have surgery, if it bothers you to much you can maybe give it a gentle massage with a finger which seems to help mine.
I have not had surgery for my tumor, the surgery I have had was for an injury. I was making a cup of coffee for my girlfriend one morning ( who was recovery from a cancer operation herself ) and accidentally drove the corner of the top kitchen cupboard through my skull by turning to quickly, it punched a hole in my skull. I had to be put on a waiting list for surgery as I was not going to die from it right away. The waiting period for my operation was about 18 months because my operation would continually get knocked back for more critical patients, I had 3 CT scans to monitor the injury during my wait. During the last scan I had a feeling of being just a little unwell and out of curiosity asked the radiologist how much radiation I was getting during the scans and how much was to much? The answer I got raised the hackles on the back of my neck " I don't know we do what were told to do by the requesting doctor". I also found out that even though they where using iodine to enhance picture contrast quality they had to turn up the out put of the radiation to get a better picture, that feature is an elective range which was in use on all CT scanners at the time, I do believe that has changed with newer machines as people have been burned by CT scanners and it was exposed to the newspaper/media services. Anyway to cut a long story sort I got my operation and all was good for about 5 years.
Apart from my hair and facial mole growth, I got and get teased by my relatives all the time about my ever increasing baldness, I am the only one in my family on both sides of my mum's and dad's who has ever suffered from baldness, I am also the only one who has moles on my face as well. I must have received one hell of a dose of radiation. The nearest estimate is about the equivalent of about 3000 to 5000 x-rays to my head, it's all documented and I still have the original scans with doctors report that apart from my injury that the rest of my brain appears to be "average", no sign of tumor or anything unusual.
I'll make this next bit as short as I can but if you have questions please ask.

After five years I started having problems (symptoms) First- bumping into furniture, could not estimate distance properly and depression. Later- personalty changes, memory issues, blurry vision and finally speech problems. At first I went to my GP and was given anti-depressants and a referral to a specialist who then got me into hospital and another CT scan. I got a very honest diagnoses that I had a Meningioma with high current growth rate and I would probably not be alive in 6 to 12 months. An operation was not a good option for the following, position, size, tendrils extending into vascular system, brain and skull, large amount of blood vessels in tumor and very high likelihood of only partial removal possible. The risk was to high and gamma gun had the same risk level and other forms of radiation treatment ineffective due to the original radiation which caused it in the first place. My genetic vulnerability was discovered later when my wider family found out.
I with the backing of my brother decided to roll the dice, my treatment options were very poor options so I decided to look into herbal medicine. I had 2 things in my favor, a large amount of blood vessels in my tumor and my genetic vulnerability which has a relationship to a high mitochondria count in my cells. After all my reading and learning I took on a combination diet and herbal treatment.Cancerous tumors cells turn off mitochondria as they normally supply energy and act as policemen in healthy cells. Turmeric has a known and proven anti-cancer chemical in it called Curcumin and has been proven to turn mitochondria back on and when the policeman function of mitochondria detect that the cell is cancerous and it literally tells the cell to commit suicide. I don't want anyone to stop their treatment after reading my post, it's not worth the risk. I risked all because I had very little choice, I don't do turmeric alone and have been experimenting on ways of improving up take and complimentary combined treatments.
Here's a link to the American Cancer society to explain some things about turmeric. http://www.cancer.org/treatment/treatme ... s/turmeric

It's not perfect as any treatment for cancer is, my condition now is that I have had no new growth, I can estimate distances again, I feel as I once did with what I believe to be normal emotional levels, the moles on my face are gone and I have no speech or memory issues. It has now been 4 years since I told the bad news. My GP gradually increased my visit intervals till he said " I want you to start coming to see me once every six months, actually forget that, why don't you wait until the next time your sick" and that was just over a year ago, and last but not least My baldness is static as well, now if only I could quit smoking that would be amazing.


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