Race against time for Ilfracombe cancer sufferer

10:40 06 March 2013

Ilfracombe couple Michele and Gary Marshall hope enough money can be raised to send him to America in a bid to save his life.

Ilfracombe couple Michele and Gary Marshall hope enough money can be raised to send him to America in a bid to save his life.

Archant

Couple vow to defeat deadly brain tumour by fund raising for treatment in the US.

"I am not going to leave Michele - I am going to fight this with everything I have."

Cancer sufferer Gary Marshall.

AN Ilfracombe man who has been given less than a year to live and his wife are pinning their hopes on an alternative treatment available only in America.

The world of Gary and Michele Marshall was shattered in January when he was diagnosed with an aggressive malignant brain tumour and given six to 12 months to live.

On January 29 doctors at Derriford Hospital removed four fifths of the tumour in a six hour operation and a couple of days later they were told the devastating news.

Gary, 54, begins chemo and radiotherapy next week, but has been told this will only slow the fast growing cancer for a few months.

"I am not going to accept being told that my husband cannot be cured - I have to find someone who can help us."

Michele Marshall

“I just kept looking at the surgeon as he was telling us the prognosis and thinking, ‘I am not going to accept being told that my husband cannot be cured - I have to find someone who can help us’,” said Michele.

Determined to beat it, they have found the Burzynski Clinic in Texas, which offers hope to terminal cancer sufferers, but the cost is around £90,000 a year.

Friends, family and even strangers have rallied around the couple, who have launched a race against time to raise the money.

It was a bolt from the blue for Gary and Michele, 53, who married in 2008 after meeting on an internet dating site and discovering they had both served in the Royal Air Force. Gary also served as a firefighter in Lancashire.

In December, the former John Fowler Holidays sales manager began experiencing co-ordination and balance problems.

Then, in January, Gary suffered a seizure while at North Devon District Hospital and a CT scan confirmed he had a tumour; then it was an agonising wait of more than two weeks for the operation and the dreadful news it was a malignant condition called glioblastoma multiforme.

“We both said, that can’t be it, we have to find something that can help us, so I looked on the internet and came across the Texas clinic,” said Michele.

“I was determined. I was not just going to think ‘this is it and they can’t cure him’. But Gary was amazing; he was just taking all the information in while I burst into tears.”

Gary says he is determined to be positive: “I have never once allowed the idea of six to 12 months to stick in my mind.

“I can’t say I don’t have dark moments, but I push them out and don’t allow the idea that this time next year I might not be here to take root. I am giving it everything I’ve got.”

The ‘antineoplaston therapy’ offered by the Burzynski Clinic has been called controversial by some and is not available in the UK, but some cancer survivors say they have been cured.

Examples include Laura Hymas from Kent, who was given six to 18 months to live, but saw her tumour eventually disappear after treatment.

Donations towards the treatment have already amounted to more than £2,300. His daughters Stephanie, 23 and Melissa, 19, are already busy helping, as is Michele’s son Shaun Crawford in London. Melissa is part of the Ilfracombe band Digital Natives and has a fund raising gig planned.

Michele’s friend Belinda Harris has pledged support and her friends, Jamie Stone and David Stratford have offered to complete the Two Moors Walk from Ivybridge to Lynmouth to raise money.

“People who don’t even know me have heard the story and now they want to help by giving their time or making a donation, it’s really amazing,” said Gary.

“I am not going to leave Michele - I am going to fight this with everything I have.”

Michele added: “We are so grateful to everyone for all the donations we have had so far, not just the money, but the knowledge that people are kind enough to help.”

If you would like to help Gary, you can donate by going to ‘Gary’s Brain Tumour Appeal’ at www.gogetfunding.com. To find out more about Gary’s story, contact the family or make a donation, go to www.garysjourney.net

* Click on the link to the top right of this story to go straight to Gary’s website.

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15 comments

  • Once again we cannot be sure whether or not the clinics ANP treatment has cured anyone of any cancer. There simply isn't the evidence to support this. Often I get asked "what I can offer" and the answer is regrettably little. However CRUK can help patients find reputable trials of treatments that show some promise from reputable providers Currently there are 13 trials actively recruiting in the UK. I would advise the family to explore these options (as they are free and offer at least as much chance as ANPs of actually working. Let me be abundantly clear on two points: 1. I receive absolutely no money from "Big Pharma" I am motivated to write and comment about Burzynski because I feel what he is doing is deeply wrong and takes advantage of desperate and vulnerable people. Who wouldn't be angry about that? Who wouldn't be angry about a clinic that appears to be taking advantage of the terminally ill? I do not believe we should allow someone to make thousands from terminally ill people simply in exchange for an empty promise. 2. When you say I offer nothing you should remember that effectively Buryznski offers nothing as well. His treatment is unproven and further research into the pro-drug he uses for ANP (sodium phenybutrate) has rejected it's use as a viable cancer treatment. It may have some use as an adjunct therapy alongside conventional chemo (in a sense acting like a catalyst to help other chemotherapy agents kill cancer cells) but on it's own it shows very little promise. I reiterate: there is no evidence that Burzynski has used ANP to cure anyone. Many of the cases reported as successes (and it is worth noting that Burzynski uses his own definition of success and not the standard accepted definition from oncology or medical science) can be attributed to the delayed onset of effects from prior chemotherapy and radiotherapy, previous surgery (a number of Burzynskis "best cases" has most of their tumours removed before undergoing ANP treatment), spontaneous remission and for some lucky, lucky few just simply being on the right side of the statistics.

    Report this comment

    Keir Liddle

    Thursday, March 7, 2013

  • Just to make it clear to everyone, the Registered charity is Yes to Life - charity number 1112812 On JustGiving since May 2004. www.yestolife.org

    Report this comment

    B

    Friday, March 8, 2013

  • It is worth noting that there has been In Vitro research, and some very poor, poor, quality human studies into ANPs. But what Diddymus doesn't mention is that these studies explore ANPs as an adjunct to chemotherapy. That is to say it isn't given as a seperate agent rather as a chemical used to increase the effectiveness of conventional chemo. Indeed in that respect it shows limited worth. However other drugs have been developed and do the job a lot better.

    Report this comment

    Keir Liddle

    Saturday, March 9, 2013

  • Well said Keir! My facebook has been plagued with invitations to donate to this cause and when I saw the gazette handing this scam the front page I wasn't very happy! I hope people see sense and if they want to give money give it to a registered charity. I wish Gary and his family all the best but instead of wasting the precious time you have enjoy it with your family. I think Lisa and Rexdeus have missed the point here, there is NO evidence any where that the clinic has cured any one. Forget your conspiracy theories and nonsense all Burzynski has to do is publish a paper with proving he has a functioning treatment but he has not done that. The man is in my eyes evil, conning dying people out of their money and precious last moments on this earth.

    Report this comment

    Dan Hunter

    Thursday, March 7, 2013

  • To all those commenting below, I am Gary's eldest daughter and finding the comments of people who do not approve very upsetting. This is not just a story line for people to pass judgement on this is currently our lives and what we are suffering. If this is the path my family have chosen it deserves no criticism from complete strangers. If you do not agree with this form of treatment then I only pray your families do not fall ill to cancer and suffer the way we are. This article was published to try and help my dad because none of us want to lose him, not for you to start voicing your opinions. Keep them to yourselves because the more you try to alter your ego the more you are breaking the heart of a daughter wanting to fight for her dad. And as commented below if our page does appear on your Facebook and you don't approve then just block it, I can't believe how inconsiderate and vile people can be during a time like this.

    Report this comment

    Stephanie Marshall

    Saturday, March 9, 2013

  • I would ask that the Marshalls seriously reconsider this course of action. There is little evidence to suggest ANPs are in any way effective as a treatment for cancer and there is some considerable debate as to whether they will be available in the future (as the clinic is in the middle of an exceptionally long FDA audit). In over 35 years no publications of trial results in ANP therapy have been published that show it has any efficacy in curing cancer. Burzynski has been sued by a small number of his former patients for making exaggerated claims of efficacy or because the therapy was claimed to have harmed them. Notably the 2012 case of Lola Quinlan. In 1983, Stanley and Bernice Zabodyn filed a suit against Stanislaw Burzynski. They believed that their daughter’s treatment at the Burzynski Clinic increased her pain and hastened her death. The case was settled in 1986 with a payment of $300,000 to the Zabodyns. In 1998, Mark and Susan Bedient filed a suit against Stanislaw Burzynski, seeking damages for the death of their daughter Christina. They claimed that the the doctors made misrepresentations to them about the efficacy of antineoplastons, the effect that the treatment was having on Christina’s tumour, and about her prognosis. They said they had believed the alleged misrepresentations. They also claimed that Burzynski and his clinic were negligent and treated their daughter in a manner that violated the standards of acceptable medical practice. Also in 2000, Russell Middleton, individually and as representative of the estate of a former patient, Gail Middleton, filed a suit accusing Burzynski of fraud, constructive fraud, negligent misrepresentation and breach of contract. Middleton’s petition alleged that Burzynski had knowingly andor recklessly made false misrepresentations as to the amount of fees to be charged, failed to provide detailed and itemised billing, and made false representations regarding FDA approval and sponsorship. In February 2012, Kenneth Adams, individually and on behalf of his deceased wife Lilly Louise Adams, filed a wrongful death lawsuit against Burzynski. He said that in November 1998, his wife sustained injuries that eventually led to her death while seeking cancer treatment at The Burzynski Clinic. Again I stress there is no scientifically proven benefit of ANPs as a treatment for cancer. They also carry with them significant risks associated with the treatment due to the high doses of sodium involved. This can be fatal if not carefully and correctly monitored and indeed may have been implicated in the death of some of Burzynskis paediatric patients. Please think over this decision carefully. It may seem like Burzynski is offering hope but it is false hope. I note with sadness that off the three or four examples often quoted in these articles of UK patients who have reportedly seen some success from this treatment we are now down to just one. To the journalists still reporting stories like this as human interest. Please, please note that you are ignoring a large scale medical scandal here and to simply state the treatment is controversial is not enough. It is false balance and it is enabling the exploitation of the vulnerable and the desperate. Whether this is an intentional explotation or one born out of arrogant hubris is a matter for some debate.

    Report this comment

    Keir Liddle

    Wednesday, March 6, 2013

  • In response to the comment above. While it was obviously sent with good intent, there are other considerations here. I have never met the Marshalls, but I'm sure that they have seriously considered all courses of action, before deciding on the one that they are taking. The fact that there is little evidence to suggest ANPs are an effective treatment for cancer, does not mean that there is no evidence. The fact that some people have sued the clinic, does not take away the fact that some have been cured.Families of the deceased or terminally ill, quite understandably want to seek blame. If this Burzynski person is a quack as many claim, maybe he will be judged at some time for that. Either way, this treatment offers hope, which is what Gary and Michelle need. They both seem very positive and determined too. This attitude in itself has been known to help people survive cancer. It's not for us to decide whether we believe this treatment is right for Gary. That's a decision he has made with Michelle. Now they are asking for our help. We as fellow humans should respond with that help by sharing the story, sending good wishes, donations and praying too.I think Gary will beat this. Please donate and give him the chance to at least try the treatment he has chosen.

    Report this comment

    Lisa White

    Wednesday, March 6, 2013

  • Ignore Mike Stevens If he was correct antineoplaston research would not have been done in Poland, Korea, Russia, Egypt, Japan, China, Taiwan (Republic of China), and the USA More research was just published in China 62012

    Report this comment

    Didymus Judas Thomas

    Saturday, March 9, 2013

  • Many thanks for all your comments on this story. We are aware there is an ongoing debate regarding this treatment but out of respect to the family, who have taken the difficult decision to pursue this course for Gary, we have decided to close further comment.

    Report this comment

    Andy Keeble

    Monday, March 11, 2013

  • What would you do Keir Liddle? Give up and bury your head in the sand? Let us not forget motives here. We all know that a psychoanalyst does not want to cure the patient, for if he did, he would lose a client and that means income. I have read up on this Clinic and was not surprised of the aggressive tones of people who have been disappointed and the more sinister reporting by people who obviously are in the pay of the Pharmaceutical industry, that fears a real cure, a cure that will no doubt bring in less money for their share holders. People have been cured, not all by some have, and that means for Gary, a chance too. I cannot guess what your motive is Kier, but to demoralise someone determined to fight his ailment with all his and his family might, is disturbing in some way. I know Gary, and I know what a good rational man he is. He will do his best to beat his Cancer and deserves every chance to do so. Like I have already said, the clinic has cured people in the past, and that is enough for me. It is better than doing nothing, or have you a better idea?

    Report this comment

    Rexdeus

    Wednesday, March 6, 2013

  • Once again we cannot be sure whether or not the clinics ANP treatment has cured anyone of any cancer. There simply isn't the evidence to support this. Often I get asked "what I can offer" and the answer is regrettably little. However CRUK can help patients find reputable trials of treatments that show some promise from reputable providers here: http:www.cancerresearchuk.orgcancer-helptrials%20?ssSourceSiteId=home Currently there are 13 trials actively recruiting in the UK. I would advise the family to explore these options (as they are free and offer at least as much chance as ANPs of actually working. http:www.cancerresearchuk.orgcancer-helptrialssearch-results?AdvancedSearchFormType=research_and_trials_adv_search_form&cancertype=157%23126%23Brain%20tumour&stillrecruiting=Open Let me be abundantly clear on two points: 1. I receive absolutely no money from "Big Pharma" I am motivated to write and comment about Burzynski because I feel what he is doing is deeply wrong and takes advantage of desperate and vulnerable people. Who wouldn't be angry about that? Who wouldn't be angry about a clinic that appears to be taking advantage of the terminally ill? I do not believe we should allow someone to make thousands from terminally ill people simply in exchange for an empty promise. 2. When you say I offer nothing you should remember that effectively Buryznski offers nothing as well. His treatment is unproven and further research into the pro-drug he uses for ANP (sodium phenybutrate) has rejected it's use as a viable cancer treatment. It may have some use as an adjunct therapy alongside conventional chemo (in a sense acting like a catalyst to help other chemotherapy agents kill cancer cells) but on it's own it shows very little promise. I reiterate: there is no evidence that Burzynski has used ANP to cure anyone. Many of the cases reported as successes (and it is worth noting that Burzynski uses his own definition of success and not the standard accepted definition from oncology or medical science) can be attributed to the delayed onset of effects from prior chemotherapy and radiotherapy, previous surgery (a number of Burzynskis "best cases" has most of their tumours removed before undergoing ANP treatment), spontaneous remission and for some lucky, lucky few just simply being on the right side of the statistics.

    Report this comment

    Keir Liddle

    Thursday, March 7, 2013

  • After reading Keir Liddles negative comments about our choice for Gary's treatment I felt it was important for the clinic to be able to answer the allegations so please see their response below: There are many inaccuracies in this written piece. The accusation of Dr. Burzynski not publishing is a completely incorrect. A cursory glance through Pubmed.com would show a listing of 46 http:www.ncbi.nlm.nih.govpubmed?term=Burzynski%20SR. Over the last 10 years, at least once or twice a year we have presented our clinical and basic research data at large international congresses attended by thousands of specialists in the area as well as news media and the general public. The most important congresses were annual meetings of the U.S. Society for Neuro-Oncology, the European Association for Neuro-Oncology, the World Federation of Neuro-Oncology, and the International Symposia on Pediatric Neuro-Oncology. After the congresses, the abstracts of presentations were published by the highly respected journal, Neuro-Oncology, and printed by Oxford’s University Press. Additional data were also presented by a group of Japanese doctors including the recently published results on randomized, controlled clinical trials in colon cancer with liver metastases, which was presented at the European Society for Medical Oncology meeting and published in the Annals of Oncology. Attached are 25 abstracts of interim data on clinical trials, basic research and some case reports that were published in Neuro-Oncology from October 2003 to September 2012. These abstracts are available in libraries all over the world and through the Internet. In addition, there was a Japanese presentation published in the Annals of Oncology (attached). There were five interim results articles on Phase II clinical trials with the last one published in 2006, and three review articles. There is also a book chapter on both basic and clinical research on Antineoplastons published in 2006, one recent article on basic research published in June 2012, and two articles on targeted therapy, published in 2011. Attached is a non-exhaustive list of the articles that were spoken of. Highly respected peer-reviewed journals are unlikely to accept interim results on clinical trials. We tried to submit such data, but were rejected. This is one of the reasons why we did not publish additional articles on clinical trials since 2006, because we decided to wait for the completion of the clinical trials which occurred just a few months ago. Since July 2012, we have prepared numerous manuscripts which describe the results of clinical trials, and we continue this process at present. These manuscripts are at various stages of peer review and submission to medical journals, and it is beyond our control when they will be published. The lawsuits brought against Dr. Burzynski have been frivolous and accusatory which has led to their dismissal. The first complaint you mention was a grievance by the family in which the doctor’s insurance carrier settled a claim without proceeding further. The next few, likewise, were in the same category. The Adam’s lawsuit you mention below involved a patient who fell outside the Burzynski Clinic building and wanted to sue the clinic. This lawsuit was withdrawn by the patient’s attorney. Our clinic has had virtually every regulatory agency that is involved in healthcare matters investigate us on a monumental scale dating back to the 1980’s. They continue to do so today. Therefore to call our clinic “a large medical scandal” is preposterous to the point of it being comical if it were not maliciously delivered. A small subgroup of individuals have gone after any and every patient they hear is attempting to get treatment from us with more or less the same false accusations such as those we’ve addressed in this letter. We hope this helps to answer some of your questions and concerns. Best regards, Michael Hamilton International Relations The Burzynski Clinic 9432 Katy Freeway Houston, TX 77055

    Report this comment

    Michele Marshall

    Thursday, March 7, 2013

  • The problem with Burzynski's treatment is that there is no credible evidence it works - he has registered over 60 clinical trials in the last 20 years and published none of them. Most of the high profile cases we have seen in similarly heart-rending fundraising human interest stories in the press, have followed a path of huge public support, early promise, odd results spun as progress by the clinic but seen as much more worrying by oncologists, and finally terminal decline and death. Stanislaw Burzynski is not an oncologist. He uses standard chemotherapy drugs as part of his treatment, but he follows a cargo-cult version of targeted chemotherapy regimens. His trademark treatment, "antineoplastons" seems to be off the market now following a visit to the clinic by the FDA. It is hard to see what Burzynski offers that is distinct from legitimate cancer centres, other than a history of atronomically large bills and unrealistic promises. It's worth remembering that his practice would be illegal in the UK, and it is skirting the margins of what is legal in the US, surviving mainly on the basis of political pressure and apparent "astroturfing" (fake grass-roots campaigning sponsored by the beneficiary). http:josephinejones.wordpress.com20111129burzynski-blogs-my-master-list has a good selection of discussions about Burzynski and why he's considered a problem by many people. Yes, he may be a "brave maverick doctor" who simply lacks the ability to publish his results in a way the scientific community can understand, but given the number of different people who have tried and failed to work out what he is doing it is more likely that he is simply wrong. That's allowed in science, but being wrong and then telling the world you are right, is not.

    Report this comment

    Guy Chapman

    Wednesday, March 6, 2013

  • Dear Dan Hunter, While i respect you do have your own opinion, there is a hide and block button on your Facebook as well as other pages in the local paper - oh and a bin. It is your option to read or disregard. There is evidence to prove this treatment works as they are living today to tell their story. There is no more risk with conventional medicines, it is simply how the individual reacts as to the benefits of any drug. The fact is alternative is irrelevant to the cause. The majority of cases against the clinic date back many years AND they are Americans who tend to have a tendency to take anything to court. With respect to your own opinion, i urge you to place yourself in Gary's shoes with 2 young daughters, simply wanting a chance to live longer. I don't think you can knock a man or any person for wanting that?

    Report this comment

    l SohTanq harris

    Thursday, March 7, 2013

  • I'm sorry Michelle, you clearly don't understand the term "publish in a peer-reviewed scientific journal". If one sends an abstract to a conference, this abstract will not be peer-reviewed but will automatically appear in an associated journal's report of "abstracts from the xxx meeting". These reports are preliminary findings, and usually are work that is then formally submitted in correct trial format to a journal, where it will undergo proper peer-review. None of these published "abstracts" meet the criteria scientists lay down for published articles. None of the research you say Burzinski has done has made its way into the scientific domain in a format where others can scrutinise data and findings. If the work was so revolutionary and effective, it would be immediately seized upon, analysed and attempts made to verify and replicate it. The fact that data and studies have never been published speaks volumes. The only one with something to hide is Burzynski, and everyone wants to know why. The only plausible reason is that he fears disclosure, and revelation as to how ineffective his therapies are.

    Report this comment

    Mike Stevens

    Friday, March 8, 2013

The views expressed in the above comments do not necessarily reflect the views of this site

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