Though guidelines suggest screening starts at 50, researcher says it's premature to change them
by GingerBennett on Thu Jun 09, 2011 05:03 AM
Thanks for all the information you give out. I looked into Burzynski but decided it was too expensive and too far away from California. They require you go there every few weeks. I was diagnosed with GBM in February, have had surgery and have now been through radiation and chemo for 6 weeks. I am supposed to have chemo every month for five days, indefinitely, but I don't think I am going to do that. I realized I didn't have time to do the research to find an effective, affordable and geographically reachable program, which is why I went ahead with chemo and radiation. I have continued researching alternative treatment and am planning to put myself under the care of a holistic physician in San Francisco. I was referred there by a friend who has been in treatment with him for several years with breast cancer. She is well and healthy, full of energy. I've also been doing other alternative adjuncts and will continue to explore. A friend recently sent me to a web site put up by a man who has been healthy for seven years since being diagnosed and treated with agressive brain cancer. He "pulled the plug" on radiation part way through, feeling it was too damaging. Now he writes and speaks about how he healed himself, supplements he used, etc. The web site is healinghut dot net. Everything I read says that cancer is at least 85% emotional. As a long-time professional hypnotherapist, I know that every illness has an emotional issue contained within it and also a potential gift of self-awareness. I have continued going within and have had insights about issues, and hence about necessary inner and outer work, that this diagnosis has brought to light. I believe that I can now use this experience to go on to have a long and healthy life. There is one more resource I would like to pass along. There is a methodology named Total Biology which regards illness as the healing phase of a stress. It is a very enlightening view of serious illness and they have much success with helping people heal themselves by dealing with the underlying stress and convincing the brain there is another way.
With many best wishes to all,
by SmittysLove on Fri Jun 10, 2011 04:40 AM
Unfortunately, Shemay does not have any understanding of Brain Cancer, and GBM in particular.
As a lay person she thinks that all cancers and all cancer treatments are the same. She is very anti-chemotherapy, as are many people. However, unlike people who have the intelligence to be open to all information, she has never grasped the fact that only one Chemotherapy drug is approved by the FDA for GBM, and that that drug actually is much different from many other chemotherapy drugs for cancers that, unlike brain cancer, can metastisize to other parts of the body. Brain cancer does not metastisize to other parts of the body. Just this one fact makes a huge difference in the toxicity of Temador. Of course there are other differences.
She does not know, or even care to educate herself on medical facts about GBM.
We have all heard the adage "If it sounds too good to be true, it usually is". This goes thrice for her misinformation.
And, by the way, brain cancer is not in 'stages', it is classified as Grades by WHO (World Health Organization). And the brain cancer 'grades' are substancially different from other cancer 'stages'. Of course I'm sure "Shemay" will have plenty of unsubstantiated information claiming to discredit WHO. She knows so much more than the medical community!!?!
Burzynski cannot 'cure' brain cancer. He can hasten the end without providing the proper care that provides a quality of life or easing the approach of the end, which current medical and pallative treatments can.
by jon4156 on Thu Aug 04, 2011 07:18 AM
Let your common sense prevail. Anecdotal evidence of people surviving cancer based upon holistic remedy, scientific remedy, or even synthesizing urine, abounds. What the anecdotal evidence does not take into account are factors such as physical condition, size of the tumor, resection effectiveness, and many other important data points.
Temodar and Avastin have by scientific trial proven to provide the longest survival times, in general. This is why most all new clinical trials compare themselves to standard adjuvant treatment. If the new treatment is not better than what is known to provide maximum survival time, then there's no point in approving it for wide spread use. If the new treatment is better than the standard treatment, then that new treatment becomes the new baseline to which all others are compared. This is a logical methodology to finding treatments that provide consistent benefits to the majority of the population.
So user "Willing" claims Bruzynski had 26 cases symptom free for 2 to 5 years, and 6 cases surviving 5 years or more. Sounds great from an anecdotal perspective, but let's look at this claim a bit more logically. First, the numbers are meaningless without knowing how many total people were in the study. If there were only 26 people in the study then the findings are overwhelmingly positive. If there were 100 people in the study then the findings are on par with standard adjuvant treatment of Temodar and Avastin. But if there were more than 100 people in the study the findings indicate Bruzynski's treatment is worse than current standard medical treatment.
Next, the words "symptom free" are meaningless because anyone who has dealt with this disease knows that a tumor can be growing inside of you yet display NO symptoms. It is not until the tumor becomes large enough to effect the brain negatively that symptoms are displayed. The scientific medical community is not interested in "symptom free" solutions, they are interested in solutions that inhibit growth of the tumor whether or not symptoms exist. This is why all clinical trials use Progression Free Survival (PFS) as one way of determining the effectiveness of a treatment. This is also why most clinical trials boot the patient OUT of the trial as soon as they determine the tumor is progressing (growing) because it is then obvious that the clinical trial is not working for that patient and they need to get onto some other treatment.
I think everyone has to make up there own mind what is the right treatment for them. But I would suggest that those of you looking for treatment do so after lots of research regarding the pros and cons of picking a particular treatment. No treatment should be chosen based upon anecdotal evidence.
by Shemay on Thu Aug 04, 2011 07:40 PM
I have been posting messages on cancercompass for more than five years now. Not ONCE have I ever advocated any cancer patient forgo standard of care treatment for alternative or any other protocol. My goal has always been only to offer hope and INFORMATION for others to research for themselves before just blindly accepting that surgery, chemo and radiation are the ONLY choices with any proven efficacy.
The author of the many negative messages posted to me on the brain cancer board has absolutely no knowledge of me personally other than what is in my profile but for some reason beyond my understanding has chosen to follow many of my posts, not with valid debunking information but only with personal OPINIONS about alternatives and personal ATTACKS on my intelligence and integrity.
At the end of the day I shall have no regrets since I have always advocated for everyone to make their own informed decisions regarding treatment. The same cannot be said for others who use fear tactics and condescending comments to persuade others that their ONLY HOPE is to stay with the current treatment.
It is POSSIBLE they could be wrong!
I pray for wellness for all........ whichever path is chosen.
by SmittysLove on Thu Aug 04, 2011 10:36 PM
What I write is not my personal 'opinion', .. much as you would like it to be.
My comments actually come from something solid, something I actually do, that I'm building, for brain cancer victims:
My work on brain cancer is not 'posting opinions on cancer care' to cancer message boards. Long before I even knew about such message boards, I had started putting the kernels together for a need I saw. Never, ever thinking a brain tumor would affect my personal life, particularly my wonderful husband. However, his diagnosis certainly focused and expanded the basics of what I was originally formulating.
I started thinking about this several years ago, years before Smitty was diagnosed, in a conversation with 2 friends about the large number of brain tumors here. The actual beginnings, beyond conversations, started before my husband's death, when he was doing pretty well.
Since his death from GBM I have been putting together the Brain Cancer Foundation of a large Cancer Society - the only reason I am not including the place in the official name of this cancer society is that it would give away where I live, and I prefer not to. Some on this board, either presently or formerly, know.
There is an unusually high instance of brain tumors and brain cancer, particularly GBM in this area. I am supported in steering this endeavor by personal friends who have lost spouses or immediate family members to brain cancer, and by the Director of the Cancer Society its self, who is a decades long friend. Two decades ago she founded the Cancer Society here herself.
What is it for?:
Very basically to provide information, education, support of many types, referrals and access to care for brain tumor patients and their families/caregivers.
We target the newly diagnosed and those already on the journey. The needs are different, as I so clearly learned.
Because of the unusually high incidence of brain tumors in the area we have developed multiple avenues for public eduction. Unfortunately many brain tumor victims here remain undiagnosed until shortly before death, and in many cases are only diagnosed after death. When you have heard the stories from families who didn't know what was wrong with their loved one.. you realize how terribly important this is. The stories are horrible. Anyone who has heard as many stories of undiagnosed, or diagnosed far, far into the journey as I have would never, ever suggest anyone with a brain tumor take the time to check out non-standard medical treatments. And would realize doing so is cruel, unintended as it may be.
Beyond public education we consetrate on several aspects:
LOCAL MEDICAL COMMUNITY
*Access for training of local oncologists and their staff, and the pertinent staff of the Cancer Society on brain cancer via 2 major U.S. Cancer Centers well known and often mentioned here; as well as access to Cancer Institutes that work with those centers and are physically closer to us, so more easily reached by local patients. Access and brain cancer specific referral contacts also to local internists, surgeons, and the two E.R.'s It is a network.
PATIENTS AND CAREGIVERS
Education on braiin tumors, their symptoms, explanation of terms they may hear and answers to questions - to the extent of informaiton only, for brain tumor patients and their families, who are almost always the caregivers here. We do not advocate one treatment path, drug etc.. In fact we only advocate that the person get treatment, and aid them in doing so. We are constantly working on our 'library' of medical research and papers published in medical journals going back to 2000 on brain cancer. (Lancet Oncology referrenced by Shemay, being only one journal). This is primarily for easy, quick access by local medical personnel, and is only on brain cancer.
* Support to families and caregivers somewhat similar to but not the same as Hospice, which is not available here. This is not easy and is, and will likely always be, a work in progress. It's less medically oriented and more directed to 'ease of life for all involved' (e.g. taking people to appts, sometimes house cleaning, laundry, meals, picking up prescriptions,.. the list grows). However, regarding end of life, we return to our medical network who know brain tumors.
*Ongoing logistical support, informaiton, and help with things like appointments at Cancer Centers; help with travel information and with transportation, lodging, and any other help we can. We are slowly buildng up a small network of kind resources. And are sometimes able to provide things like air travel, lodging, meal allowance, etc. for those who need it but can't begin to afford it - we have a lot of those in our area.
Lastly, but most importantly.
* As I menitoned we are in an area which has an unusually high instance of brain tumors, and is unusually isolated, it also has an unusually low instance of transience in the general population. Because of this we are working towards getting a research program on the area. This is my greatest hope in this endeavor. Just as an anecdotal example, if you go around the area and mentioned 'brain tumor' to as many people you encounter as you can, about every 3rd person will have at least 1, frequently more, family member or close friend who has died of a brain tumor. As a little experiment, I even asked several pretty diverse people (who didn't know each other or live near each other) to do this on purpose and to a one they've come back to me astonished. Obviously that's annecdotal, and not scientific, but it's pretty scary! Obviously, I have an ongoing compilation of locals who were dx'd with brain tumors.
In this endeavor, I speak frequently with oncologists, neuro-ondologists, neuro-surgeons, radiologists, neuro-radiologists, and other of their pertenint staff. Trust me, I learn loads in these conversations.. while far from an expert, I've gleaned a fair amount of solid knowledge. Because I've had to in order to do this.
The charge that I post "not with valid debunking information, but only with personal OPINIONS (caps sic)" is not accurate.
I KNOW what happens when a brain tumor sufferer does not get the medical "standard of care", or does not get it soon enough.
by secondaryGBM on Sat Aug 06, 2011 02:50 AM
by niallsmum on Sat Aug 06, 2011 07:53 PM
Well said, Smitty's love.
by Willing on Sun Aug 07, 2011 06:21 PM
Shemay you are a trooper and I applaud you and your efforts.
It goes like this, 20 years of lies, gossip, rumor, and false info go up in flames starting August 7, on the Documentary Channel. If someone REALLY wants to know about Burzynski they will watch. If they don't really want to know they will keep tongue wagging. It is up to the individual but for the first time since the clinic went into buisness ALL the cards are on the table. One of my favorite John Mellencamp songs goes like this:
"The simple minded, and the uninformed can be easily led astray.
Those that cannot connect the dots ,look the other way.
People believe what they want to believe when it makes no sense at all.
So be careful of those who kill in Jesus's name, and don't believe in killing at all.
I AM THE ONLY PERSON IN THE STATE OF SOUTH CAROLINA THAT HAS EVER HAD A MEETING GRANTED WITH THE FDA AND THE ONLY PERSON IN THIS STATE TO HAVE THE FDA VERIFY TO HIM THAT BURZYNSKI SAVED 6 BRAINSTEM GLIOMA PATIENTS WITH NO RADIATION OR CHEMOTHERAPY.
by jon4156 on Sun Aug 07, 2011 10:52 PM
Did you also ask how many patients were treated but were not saved?
by celticcaucasian on Tue Aug 09, 2011 12:57 PM
On Apr 05, 2007 12:00 AM Gailwhale wrote: has anyone gone to the burzynski clinic in houston for astrocytoma brain cancer? we are looking into it, and would like any feed back.thanks!gail
On Apr 05, 2007 12:00 AM Gailwhale wrote:
has anyone gone to the burzynski clinic in houston for astrocytoma brain cancer? we are looking into it, and would like any feed back.
Hey Gail, I am looking into Dr.Burzin sky's clinic also.It very frustrating ,because I am not sure. My 19 yr old nephew in Ireland has a grade IV ,wrapped or growing into the brain stem. I live in the US & arrived here in Ireland sunday 8/7. My nephew has been exposed to all the radiation allowed in a life time in less than 1/2 the standard treatmemt sessions & Chemo. The doc's told my sister & mother last week 12-16 months.I have been researching since he was diagnosed 3 1/2 ,months ago.Now that I am here,I have not slept in 2 days.All I can do is research & more research.I did have contact with 2 sisters, their mother is a Pt., of the Burzinsky clinic & they were very happy. If you find any info out,in any other palce ,PLEASE share.
GOD watch over your loved one & family.
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