This topic contains 33 replies, has 7 voices, and was last updated by Anonymous 6 years, 2 months ago.
October 8, 2012 at 10:15 pm #4723
All of the above posts in this thread are of great interest. I wish we had a way to formally translate all the wordage also into FLOW SHEETS that show the relationships between any kind of therapy used and the variables or parameters used to measure response of the illness to the treatment. For me, that is the proof of the pudding, so to speak. Otherwise, I find myself "stimulated", "teased" and also frustrated because this kind of information will not be regarded as acceptable unless someone objectifies it.
Interestingly, we did that with one patient with a major response x 5 years to DCA and the journals (peer-reviewed ones) so far have not accepted our manuscript for publication.
Stephen B. Strum, MD, FACPOctober 9, 2012 at 7:20 am #4724
An attempt of flow sheet may be this: http://www.thedcasite.com/DCA_protocol/DCA_caffeine_survey_results.html (see also the report inside, last update on 2010).October 9, 2012 at 12:33 pm #4725
What Dan52 indicated above is not my idea of a flow sheet. Let me see if I create a Public Link to a DropBox website with a Word document showing you what a DCA flowsheet would look like. Try this URL:
Remember, you must use the COPY mode of operation if you wish to have a copy of this for your computer's hard drive. If you do not use the "COPY" command but instead you use the "MOVE" command, then that file is removed from the Dropbox website.
You do not need to install Dropbox to your computer but this is one of the best applications for PC or Mac I have come across.
Stephen B. Strum, MDOctober 12, 2012 at 4:30 am #4728
I had my latest CT scan a week ago. My oncologist is on vacation and I have an appointment with him on Oct 16th where I planned on hearing the results of this CT scan.
So I get a call from his clinic yesterday but I missed it and my voicemail was not set up (is now) and I could not reach them when I called back, too late. I am thinking that this is an important phone call, most likely bad news, my tumors have grown, my oncologist has read the results of the CT scan and instructed his office to notify me that waiting till the 16th is too long, that something should be started right away. Typical thought patterns of a terminally ill cancer patient I think.
So this morning first thing I go to the clinic not wanting to hear the bad news on the phone. Becky greats me and I said "I got a call", she hesitates, looks at me a moment then says "right" and leaves the room. Jose who normally takes my blood and weight arrives and says he is looking for my chart. He then explains that my oncologist has called and wanted him to inform me that my CT scan showed NO CHANGE, STABLE disease, everything as has been, no growth.
I again attribute this to Vidaza. It has been a year since I had regular chemo and nine months since I started a three month Vidaza treatment with DCA.
Vidaza caused me no side affects and I feel FINE.
So I now start another three months taking nothing but a baby aspirin a day as I have done for the last six months.
The waves were big today with 30 knot gust but I did an hour swim and rode my bike a fast four miles on Hollywood Beach's broadwalk. November 1st will be six years since I was DXed a Colon Cancer patient.October 12, 2012 at 1:40 pm #4729
Good on you as they say in Australia. My nature as a MD would be to ask why there are also not biomarker studies being done along with CT studies? For CRC (colorectal cancer) I always order, AT BASELINE, when the diagnosis has been established but before the bulk of tumor has been removed, the following biomarkers for CRC:
Of course a routine chem panel with LFTs (liver function tests) and also LDH, and of course a CBC.
Any baseline test is then followed during the patient's "genealogy" or course of illness. Any biomarker that was elevated at baseline is followed. IF there was a significant elevation, for example, in CEA, pre-operatively, to say 64, then I would expect that post-operatively the CEA would drop either to normal if the tumor were completely excised AND no significant volume of metastatic disease. If there was residual cancer, the CEA would drop after the bulky primary tumor was removed but not fall into the normal range. This is a far more sensitive way to detect residual cancer than CT scans, and no radiation exposure.
Also, with the primary tumor, I always recommend at least use the tumor tissue to study the unique nature of that patient's cancer with:
IHC (immunohistochemistry), Chemosensitivity Testing, Gene Expression Profiling.
The latter is done via a company called Caris (formerly Target now). Chemosensitivity testing must be done on live tissue so this needs to be set up in advance of any surgery and it is best done by Cancer Research headed by Larry Weisenthal, MD in California or by Robert Nagourney also in California:
Larry Weisenthal, MD
Weisenthal Cancer Group
16512 Burke Lane
Huntington Beach, California 92647 USA
T: 714-596-2100 or 714-894-0011
T: 866-364-0011 (Toll Free)
Robert Nagourney, MD
750 E 29th Street
Long Beach, CA 90806
IHC (immunohistochemistry) is best done by Helmut Bonkhoff, MD in Berlin, Germany and can be done on the paraffin-embedded tissue blocks that are created from the live tissue and are kept by the hospital doing the surgery for a minimum of 8 years (by law). IHC is a panel of tests that show the unique enzyme nature of the tumor. For example, the "expression" of estrogen receptors may be high, mid-range or low in various tumors like BC (breast cancer). In PC (prostate cancer), the expression of the enzyme FAS (fatty acid synthase) is often high. It helps the tumor obtain energy for cell growth, invasion and metastases. Therefore, if the tumor is "over-expressing" FAS, the clinician should work with the patient to instruct him or her about what can be done to reverse this, to starve the tumor–just as we are attempting to do with DCA. FAS inhibitors are available. In oncology, when we inhibit such substances it is called down-regulation (dR). What down-regulates FAS?
Xenical (orlistat), EGCG, 1,25 DHCC (Calcitriol), parasitic loranthus, GLA >alpha linolenic acid > DHA; CLA
Xenical is available in Costco as ALLI. EGCG is the active ingredient in Green Tea and high dose EGCG supplements are available from companies like Swanson and Life Extension. A high dose of EGCG would be 300mg a day to up to 300mg three times per day (tid).
Those like Robmx should have their medical records gathered together and put into chronological order with as much detail to show evidence of DCA efficacy. Just as with Bill Wieland, the gent with cholangiocarcinoma (bile duct cancer) who appeared to have a complete remission after DCA, when his records were painstakingly recreated and put into a chronological EHR (electronic health record) we learned that the start of his DCA was followed within a few days by a major course of radiation to his tumor bed. Sure, perhaps there was synergy between the DCA and Radiation, but naysayers in medicine (lots of them) will discount any meaningful interpretation of DCA in this setting, until anti-cancer activity of DCA is proven to the satisfaction of the vast "herd" or majority of scientists.
Stephen B. Strum, MD, FACP
Medical Oncologist & member of ASCO (American Society of Clinical Oncology) since 1975.October 12, 2012 at 5:44 pm #4730
Again congratulations on your continued good news from your doctor, and thanks for giving Vidaza credit for that. I believe that Vidaza is really underestimated for its efficacy against cancer and HTLV; its demethylating action is apparently critical to restoring / preserving normal cell functions. Also, the fact that you had a relatively short treatment duration (3 months) is even more impressive. I am glad that you feel fine and experienced no side effects with Vidaza – I've read that some people experience severe side effects. My best wishes to you on reaching your 6th anniversay of being daignosed with colon cancer, and your continued health.October 12, 2012 at 7:16 pm #4731
My recent CEA levels were .9 after the three months on Vidaza. 1.3 three months later and 1.4 three months after that. I don't know yet what my CEA level is after the last scan and will not know till a few days after the 16th of this month.
As to your mention of the patient who used DCA and then was found to have had a major course of radiation, my first use of DCA started May 21st 2009 and I was doing nothing else but Vitamin B. I did add supplements over the 18 months I took DCA which included fish oil, green tea and near the end Metformin but the most effect I had was in the first four months during which I took nothing but Vitamin B.
The second time I used DCA was this year with Vidaza where I took DCA at a gram a day for 90 days. I cannot seperate out what Vidaza and DCA did but the first time I used DCA for the 18 months my tumors grew soon after I stopped. This time they didn't so I assume it is the Vidaza primarily or the combo that worked.October 12, 2012 at 7:30 pm #4732
Good that you did the green tea – it's another demethylating agent, like Vidaza.
Best wishes.October 13, 2012 at 12:50 am #4733
"My recent CEA levels were .9 after the three months on Vidaza. 1.3 three months later and 1.4 three months after that."
SS: The 1.3 and 1.4 is not significantly different. Even the 0.9 vs the other values may not be depending on what laboratory did all three tests. Most important, but missing from the above is the issue of what was the CEA at baseline, prior to any surgery and what was it upon relapse. If not significantly elevated, then the CEA is not worth doing. Same question for the other markers I mentioned e.g., CA-19-9, CA-72-4 and CA-125. Any biomarker is amost always UNhelpful if at baseline it was not abnormal. It appears that the tumor's elaboration of these enzymes and proteins remains pretty constant, with an occasional exception.
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