March 12 I was contacted by Linda Geddes of New Scientist and asked for an interview.
I am a reporter at New Scientist magazine, the UK-based science and technology magazine that originally broke the story on Michelakis' Cancer Cell paper on DCA and cancer.
I have been following with interest the establishment of websites promoting the use of DCA for cancer patients who feel that they have nothing left to lose by trying DCA.
It seems that the internet, and chat rooms like thedcasite’s, are enabling patients to take control of their illness in a way which would have been impossible until very recently, eg. through sharing information about how to get hold of DCA, how to take it, what the dangers are, etc.
I was wondering whether you'd be prepared to talk to me about your own motivation for taking DCA, your frustrations in getting hold of it, and whether you feel that the Canadian health care system needs to change in order to enable earlier access to experimental drugs like DCA.
Having spoken to Dr Michelakis, I should point out that he feels very strongly that DCA should not be taken by anybody until it has gone through clinical trials to prove its safety in cancer patients in conjunction with other chemotherapy drugs, for example. Without clinical trials no-one can monitor side-effects, and if someone does get sick, this could write-off DCA as a potential cancer therapy before it has even been tested. He is also worried about people buying industrial grade DCA and dosing themselves without the PH being properly buffered.
It would be nice to hear a cancer patient's perspective on all of this, and whether you feel that others should be following your example. Perhaps you could email me, or I can be contacted by telephone on xx xxx xxx xxxx.
Biomedical News Editor
Following is the email "interview" that New Scientist did not print...
Thank you for your quick response, and don’t worry - I can understand your frustrations. An email interview is fine. My questions are:
1) Please could you describe your age, background, when you were diagnosed with breast cancer, what your prognosis is?
"I'd just like to preface this with the statement that I believe every cancer patients' experience is unique. I certainly don't want to be the 'Poster Child' for DCA. It would be like asking one person from the 9-11 tragedy to speak on behalf of everyone who lived through that. But I have been given an opportunity to share my experience and in doing so, it's my desire to help others in some way have hope to deal with this horrible disease.
I'm a 'young forty something', I'm married with two sons, aged 20 and 17. For me, turning 40 was a beginning, a reinvention of myself - I lost weight, and began the pursuit of my passion, engineering. After waiting so long for this opportunity, I drove myself to achieve, but I knew during final exams I was more tired than I should have been, and that I needed to find out why. Three weeks later, driving home from school I got 'the' call on my cell phone, my biopsy was positive, I had cancer. In that surreal moment I became a hostage with a bomb strapped to my body, knowing that the impending explosion would not instantaneously kill me, but the resulting injury would lead to a slow painful death. Over the following weeks I had appointments with a surgeon and an oncologist and it was determined my breast cancer was stage III. Using American Cancer Society statistics (which are better than Canadian) I'd have a 37% chance of surviving 7 years, if I had a mastectomy, chemotherapy (FAC and then docetaxel) and radiation. After much research, I opted to do none of those things."
2) What prompted you to try DCA, and what factors influenced your decision?
"Having an engineering mindset, I tend to question things, and I like to figure out how things work so I read everything I can get my hands on. I read the Materials Handling Data Sheets for the chemo drugs I was supposed to get. I found out that all chemotherapy drugs are carcinogenic, in fact it is possible to track which secondary cancers are likely to be caused by specific drugs. They are so caustic that if spilled, they will eat through a tile floor to the concrete. A haz-mat team is required to clean up the mess. None of this information is of course on the patient information sheets. I was disillusioned by the lack of full disclosure on the part of my oncologist. I also read Dr. Ralph Moss' book, 'Questioning Chemotherapy'. He has been researching cancer for 25 years and has come to the conclusion that for many cancers, chemotherapy is really not very effective. I weighed the loss of quality of life conventional therapy would exact on me with how much time it might buy me, and decided to pursue alternative medicine for treatment. This is not a decision for the faint of heart. It requires discipline and it's expensive because none of it is covered by healthcare. I feel very strongly that all cancer patients should do a lot of homework to be sure they have complete information (all the drug side effects and survival information given in months or years, not percentages) so that they can make their own decision about their course of treatment. My decision meant that my oncologist "no longer wished to be a party to what I was doing to my body." So I no longer have access to MRI's to assess my tumor size. I know others who are withholding information about their alternative treatments from their oncologists, for fear of the same thing happening to them. One lady with stage 4 BC has evidence that her bone is growing back. Her oncologist can't explain it, and doesn't want to know what she's doing. One's choice of treatment should not impact one's care or access to testing.
Over the past year I have been doing a lot of reading, taking many supplements (based on my own research and the advise of my naturopath) and having high dose vitamin C intravenous drips. In my research I discovered a link between DCA, pangamic acid (vitamin B 15) dimethylglycine (DMG) and diisopropylammonium dichloroacetate (DIPA), http://www.ajcn.org/cgi/reprint/32/7/1534.pdf Even back in this study in the late '70's it was being examined as a treatment for lactic acidosis (something every cancer patient has) and "had been shown to inhibit the pyruvate transporter in rat liver mitochondria". Before Christmas I saw my surgeon for an exam. He again tried to convince me to accept conventional treatment. He said without it I would have about 4 years. A year ago when I saw him he told me I'd have about 2 years. I think that is some evidence at least what I have been doing has slowed the progress of my cancer, but I'll honestly admit it has not been a cure. In light of this, and the compelling science behind DCA, I decided to try it."
3) How did you go about getting hold of it? What were the obstacles that you faced? What is the legal position in terms of being prescribed DCA in Canada - did your doctor/pharmacist need special permission from Health Canada to give it to you, for example? Is it pharmaceutical grade DCA or Lab grade DCA you are using, and how did you prepare it?
"I am one of the fortunate few who has found a doctor willing to prescribe it for me. I have seen him a few times over the past year. He has been monitoring my general health through extensive blood tests. My family's doctor told me that if he prescribed it to me he would lose his license (something that other people have faced when trying to find a doctor), but my other MD said he was prescribing it to me on compassionate grounds, with my full understanding that it is completely experimental. I am on my own so to speak. Many people have asked me how I got the drug, and I tell them to look for MD's who are open to alternative treatments. Go to a healthfood store and ask questions. Some doctors are willing to examine the science behind a potential treatment, others immediately reject it because it is not "Standard Protocol". I also found a study out of Winnipeg, Manitoba on Lactic Acidosis that should allow any doctor to legitimately prescribe DCA to treat lactic acidosis (Type B1) specific to cancer patients. http://www.emedicine.com/med/topic1253.htm "
4) How long have you been taking DCA for, how is it going, and how long do you plan to continue taking it for? Are you taking any precautions, eg. Thiamine supplements?
"I've been taking DCA for 13 days now, building up my dosage slowly. Beginning today I am at 25mg/kg/day. I have a prescription for 6 months. I will base part of my decision to keep taking DCA on the test results of individuals who are taking the drug who still have access to MRI's, CT's etc. If it is shrinking their tumors, I believe that is good evidence it is shrinking mine. I am taking many supplements, about 80 pills a day actually, but two especially with DCA are Benfotiamine (to protect against peripheral neuropathy) and Milk Thistle or silymarin (to protect the liver)."
5) Some professionals have expressed concerns about the fact that people are self-medicating with DCA and swapping tips on-line on how to go about doing it. As well as the risks to individuals’ health, Dr Michelakis is concerned that if even one person gets sick through taking DCA, this could put back the chances of it ever being approved as a drug. What would you say to these people?
"First of all I would ask them, "Are they watching their parent, spouse, child or sibling die of cancer?" These people need a more vivid picture of the desperation of this situation. I wish I could send them the emails I get from people. One distraught man (whose mother has stage 4 cancer) has even mentioned suicide because the doctor who is caring for his mom is adamantly against DCA and will likely drop her as a patient when he finds out this man (after an incredible amount of searching) got another doctor to prescribe it for her. People are shredded by the questions, "Am I doing the right thing? What if I give this and it hastens their death? What if I don't give this and find out it could have saved them?" People want the assurance they have done everything they could to save their loved one. And they aren't going to patiently wait for drug trials. They need the help now!
Second, there isn't anyone on the DCA site forum who wouldn't prefer to have a doctor prescribe this drug. The trouble is the medical establishment has abdicated it's responsibility in this situation by dumping the information about DCA on the public, without a plan to undertake immediate trials or provide access to the drug. Dr. Michelakis is a brilliant man, and I have difficulty believing that he accidentally let the information slip in his television interviews, about how easily DCA can be obtained. He also mentioned his apprehension that no pharmaceutical company would pick up the drug for cancer trials. Without a patent for the drug, there is no money to be made on it, and beyond that, if DCA is a cure for cancer, drug companies stand to lose billions in obsolete chemotherapy drugs.
It is in fact, the controversy of people self medicating that has kept this story in the press. It may otherwise have been buried like other non-patentable treatments have in the past. The idea that people should wait for clinical trials is a moot point - the information is out and people will use it. Of course we are all hoping and praying that no one will be hurt, but even if that happens, one person's injury or death might impact clinical drug trials, but if DCA is found to be a valid treatment against cancer, nothing will stop people from getting and using the drug.
Most of the people I have talked to who are trying or thinking of trying DCA on their own, have exhausted their other options. Assuming DCA works, many will still probably die because their cancers are just too advanced, but at least they have hope that it might be better for others after them. Most are not on chemo, (it's either failed or they no longer want to live through the side effects) so the risk of drug interactions in those without medical support is very limited. Besides, people are injured or die of drug interactions with medical support, as well. My father had a serious heart attack because of a KNOWN contraindication between two prescribed drugs he was taking.
Aside: The community that exists in the DCA site forum functions very much like a group of survivors after a plane wreck. People who are hurt badly themselves are reaching out in spite of their own injuries to help others. People are organizing after a tragedy. They're encouraging and supporting each other. A lady with stage 4 cancer is setting up a data base; others are writing politicians; others are pushing paperwork forward for clinical trials; others are trying to locate doctors who are prescribing; others are documenting their experience using the drug; others are researching past studies of the drug. It's inspiring to think that this may be a cure for cancer, and we are watching it unfold with front row seats!"
6) You say you are working with other people in Canada to get DCA prescribed. How many people are you in contact with? How many are getting hold of it, and how? Do you feel that the health system needs to change in order to allow earlier access to experimental drugs like DCA?
"I am not advising people who contact me on-line, just as I'm not advising people in this interview, I'm merely sharing my experience. I mention how I was able to find my doctor, what supplements were suggested by my doctor and pharmacist, and how much I've been prescribed. I've also helped to explain the math on how my dosage was calculated. They ask if I've seen any results yet. I say, not yet and that I'm waiting for others who still have access to MRI's and CT scans to post their results so we can all see if DCA is working or not. Yesterday I had over 25 emails, but I would say that represents about 10 people. I don't know how many are getting the drug, because some people will only go through a doctor and others will be more resourceful (like find a chemist for example - two of the doctors who are posting on the forum did that.)
I feel that the health care system needs to be less ridgid and allow people freedom to make choices about their quality and quantity of life. Those choices should include, but not be limited to, access to experimental drugs. Why should only the wealthy be able to attend private clinics for alternative cancer care? Why is it I have no access to the money I am saving the health care system (by not having surgery,chemotherapy and radiation) to put towards my $3000/month alternative care? Why should people be afraid of losing access to diagnostic testing if they are found to be using alternative treatments? I'm not in any way advocating experimental drugs become standard protocol without rigorous testing - I'm sure drug companies are salivating over the prospect of getting their goods to market even faster - but for people who want to take the risk, they should not have any obstacles put in their path."