FIRST. READ THIS SENTENCE CAREFULLY. WHAT FOLLOWS IS NOT MEDICAL ADVICE AND SHOULD NOT BE CONSTRUED AS SUCH. IT IS MY PERSONAL OPINION AND WHAT I AM DOING IS NOT A SUGGESTION THAT YOU DO THE SAME.

First read this news article, http://www.oralcancerfoundation.org/news/story.asp?newsId=131 I spent a great deal of time over meals etc. with one of the researchers of this peer reviewed published paper at the head and neck cancer conference in Washington DC. I have over the last couple of years religiously read all the chemoprevention materials that are available to me. While some of these have lead me to established conclusions, many report that those with recurrences of HNC/OC have high COX2 expression after their disease and this likely is a contributing factor in recurrence, though the jury is still out to conclusively state this as a fact. I have visited my general doctor and complained about my arthritic issues, which I have dealt with for some time. For these problems I was prescribed a very well established COX2 inhibitor that has few side effects and is taken by millions of people around the world. Please note that it is inappropriate for doctors to prescribe drugs for "off label recommended use" and I am not suggesting that any medical professional do so. You may be interested in knowing that even aspirin, and some over the counter non-steroidal anti-inflammatory drugs are mild COX2 inhibitors. An example of one of these is Alleve (Naprosyn). I am also beginning my own self-prescribed regime of supplements. These include 400 micrograms of selenium each day with 600 of Vitamin E (I do not buy the dl version, I buy the d version...read the label, and as a tool to remember which one I use, think that dl means "don't like") Selenium is better absorbed when combined with E. To this I am adding two other supplements from the health food store, turmeric and curcumin which is the active ingredient in turmeric. I have completely switched to green tea, which I brew in my coffee maker by the quart each day. I have decided to engage in this relatively risk free path, as a result of my own investigations of published data and studies. Please note that if you research chemo prevention studies that are on going at MDACC and other like institutions around the country, that are in mid trial stages, variations on these things can be found. The final definitive results from most of these trials are still unknown. I am posting this here as an anecdotal comment about my own behaviors only. I have received so many questions over the last 6 months about this topic that I am posting this here. I believe that any person who decides to engage in a program of chemo prevention on their own, tell their doctors what they are intending to do and obtain an OK from them before embarking on any chosen path. Everyone here knows that I am not a proponent of herbal cures, and I am not suggesting that what I am doing is any type of cure. My personal belief is that it MAY help me stave off a recurrence. Whether or not this is an accurate assessment of what I am doing is unknown. I am not suggesting that others follow my path and I have no vested interests in any company or product that I am describing here.

Watch out for Naproxen sodium (AKA Anaprox, Naprosyn or Alleve)- a guy in my bible study group was taking it for a sore back and it ate a hole through his stomach and through an artery - he had 11 quarts of blood transfused. If he hadn't been close to a hospital he would be dead.

All NSAID's can cause stomach upsets, and in extreme cases, as Gray has reported, bleeding. But to balance Gary's point of alarm/danger, it is recommended that they be taken with food, and they are not recommended on the label for anyone who has stomach ulcers or other digestive issues, as Gary's friend certainly had. Long-term use of them can indeed cause stomach bleeding in certain individuals. What Gary has described is not a quick spontaneous condition in most cases. These kinds of reactions to anti-inflammatory drugs occur in individuals who take large doses over prolonged periods of time, or as I said, have existing conditions that preclude their use at all. I am at risk with NSAIDs, and particularly Naprosyn which I took for years as a prescription drug before the FDA deemed it safe enough to sell over the counter without an Rx, as I have chronic inflammatory pain from herniated discs from a helicopter crash. I have been on them for 25 years. (At doses well above what is recommended on the over the counter bottles.) If you have reflux disease, GERD, ulcers etc. these are not for you. Aspirin by the way, a NSAID itself, also causes stomach bleeding in select individuals. While I normally agree with 99% of Gary's posts, I find this one reactionist and out of proportion, without his usual balance for both sides of an issue. Millions of people everyday take anti-inflammatory drugs over the counter in the US. What he is describing is a very out of the ordinary acute reaction, and as my post clearly states, ask your doctor first. But the FDA considers many of them, like Alleve, safe enough to be sold without prescription, right next to the Tylenol, Excedrin etc. in your local drug store. Informed balance in all things is a good idea.......be they medications, or postings.

Thanks for posting all of this Brian... I would definitely be interested in reading more on this subject... Are there more links?

Also a question, maybe a dumb one: What do you mean by "chemo prevention"? I got a totally different picture when I read that title than what the subject of your post was about... Thanks

Eric

Simply; what supplies can we give our bodies to do their job the best, specifically related to what we know about head and neck cancers? For instance, we know that head and neck cancers express COX2, we also know that those with metastasis have excess of the same. Hence an inhibitor that prevents our bodies from expressing COX2 in excessive amounts MAY be of some benefit. The jury is out for sure, but I have read hundreds of articles that deal with head and neck cancers at the cellular level, at the biochemical level, at the mitochondria level, at the protein activators and receptor levels. None of these alone provides definitive answer to how do we prevent this from recurring. But there are clues if you sift through it all. Thousands of researchers around the world weekly publish on the minutia of all this, I fall asleep at night trying to read what I can, and absorb what it all means to me. From these many, many small scientific studies, pieces of an answer reside. Pieces of bad news also reside there as well. Recent studies in Norway regarding the ploidy of cells (diploid, tetraploid, and aneuploid), MAY dictate which lesions transform to malignancy and which do not, they also shed light on which people will have recurrences and which will not, even more they MAY describe which patients will die and which will not. These studies are very preliminary, but as a questioner, I read everything I can. From that I come to simple deductions, such as the COX2 inhibition idea which has been tossed around by many. I weight the down side, and then, particularly in things where there is little to lose; I add them to my life if they make sense. If in 6 months a different perspective is adopted by the many researchers I follow, my regime will change as well. But the short of it is, that we are biological machines, that have all these microscopic level chemistries and interactions going on, each promoting or preventing another event at the cellular level. The aim of chemoprevention is to promote the good events and limit the bad ones. As to reading more about it, I cannot direct you to a specific link, as no one has gone far enough to make hard conclusions. But hundreds of articles each have shown a small piece, and from those I have started what I do. There are a few more things which I intend to add in the next few months as I correspond with various researchers, and eliminate any that pose downsides. Is what I am doing going to prevent my recurrence? I do not know. But as a science based person, I wish to apply what I can learn in the HOPE that these things will influence, some small reaction in my body that will keep me kicking. I have had some emails from people that think I am ill advised, and that perhaps a greater plan will chose my fate regardless of my actions or inactions. Those that eventually read of my demise will be able to say these were useless paths. I hope that they are wrong. New discoveries, though very small, are made every day of the week. We never thought we would map the human genome, but it has come to pass, as will the understanding of the cascade of cellular events that causes malignancy and what we can do to block the cascade. Perhaps it will happen in my lifetime, likely not. But that does not preclude a person who looks at a partially finished puzzle or equation from doing a little precision guessing, and figuring out at least part of what the answer is. You do not have to wait till the last piece is in the puzzle to see what the final image will be. There are many pieces already put together, and from these, those that dabble in the science of chemoprevention, extrapolate plans and test them out. Each time getting more data and coming closer to an answer. I'm just getting in on the game early. But at best it is a precision guess.

Actually my 45 year old friend did not have ulcers or other digestive issues. He was a perfectly healthy person but had back pain, hence the Naproxen. I took Naproxen myself (also for back pain) but had such severe acid reflux as a result of it I couldn't continue to use it. My understanding is that they now have some analgesics that are coated so that they don't desolve until entering the colon. Maybe some of the COX2 family is in there. Also OTC medications are typically much weaker than their prescriptive counterparts, but I couldn't take Alleve either.

My PDR says that if you take Naprosyn "you should have frequent checkups with your doctor" and "Ulcers and internal bleeding can occur without warning." This is not listed in the "less common or rare side effects" but in the "most important fact about this drug". It can also cause liver disease and "is to be used with caution for people with kidney disease" which are both common issues with many types of chemotherapy (particularly Cisplatin).

I don't make this stuff up - it's right out of the PDR.

Of course having Hep C I am very sensitive about any meds that affect the liver.

Reactionary - you decide.

Brian,
The concept of chemoprevention is a fascinating topic. I wonder if you could start a section in the Resources part of the web site that would list some valuable references for pursuing information on this topic.

Would you mind sharing why you are taking both tumeric and its active ingredient (curcumin) separately and at what doses?

I would also emphasize the importance of checking with one's doctor(s)before embarking on a chemopreventive routine. For example, in my brief browsing on this issue, I came upon a reference to a study that seems to indicate that tumeric (or curcumin) may inhibit the effectiveness of chemotherapy.
The reference was:

Somasundaram S, Edmund NA, Moore DT, Small GW, Shi YY, Orlowski RZ.
Dietary curcumin inhibits chemotherapy-induced apoptosis in models of human breast cancer. Cancer Res. 2002 Jul 1;62(13):3868-75.

Nonetheless, this seems to be topic that will be of great interest to this board and seems to have real potential for improving the probabilities for oral cancer sufferers. - Sheldon

Following up on the COX-2 inhibitor issue, I met last week with an oncologist to talk specifically about chemoprevention. He said that Celebrex was the preferred COX-2 inhibitor because it specifically targets COX-2 while most of the other NSAIDs target all of the COX enzymes indiscriminately. For what it's worth. - Sheldon

i wonder how COX2 levels are measured?

if that test can be added to routine blood testing, then i'd be curious to see how taking just selenium, Vitamin E and green tea reduce COX2. that would seem to be a good starting point for me. especially since i'd just need to start drininking the green tea that is sitting on my shelf - already taking selenium and E.

so how difficult is it to get some measurements to quantify the COX2 levels?

cu,
larryb

Keep going guys ..whatever your viewpoint is in this discussion ,it is wonderful to get any advice that may help. I for one will be exploring the Cox2 question..all the preventatives have to come from somewhere.

Thank you all for sharing with us .
Marica

Brian,
You must study night & day, thank you for the advice!I have been experiencing some "moans groans & kidney stones" in the waiting period for my thyroid surgery and in the past nine years of my life and have been prescribed & taken Naprosyn...I will not take it again, my preference is not for brand name NSAIDS but for ibuprofen 400 mg.
This may be of interest to you & members of the forum as it covers effects of Radiation in the head & neck area on not only the Thyroid gland but the parathyroids also....I studied long & hard from this website
http://www.endocrineweb.com/capap
as to why I am having excarberated symptoms of depression, mood swings, fatigue, muscle cramps, bone pain & kidney stones since my RX of oral SCC & more specifically since finding a follicular tumor on my thyroid gland. Yesterday I presented the info I had looked up on Hypoparathyroidism (underlined as a link in the section on Follicular cancer of the thyroid-P3.) to my H & N surgeon & was told much to my chagrin that was NOT what my tumor was doing to me..but it seemed perfect!It explained the "hormonal" changes, the bone pain that awakens me each night at 4 am, the absolute sadness, the leg cramps during the night, the "nap attacks" I feel coming on all day, the occassional 4-6mm kidney stone I end up getting pain relief for at the local hospital-all this & more on the premise that the diseased parathyroid gland gives the body incorrect info as to what amounts of calcium it needs & thus takes it from the bones & affects hormones etc according to raised or lowered levels of Calcium - unfortunately this was not the reason for my ailments as my tumor is IN the right thyroid lobe not in the parathyroid gland located just behind it and I have cancer, not parathyroidism.
Point being that although it didn't help much with my RX at this time it was a most informative & helpful site regarding IMRT to H & N areas.
Take care,
Maria

Maria,

Just curious if you have had the Hep C test? The liver can cause all of whay you mention except the kidney stones.

Ed

Ed
I know that my liver is fine; having had numerous tests over the years: before oral cancer I had RA(Rheumatoid Arthritis), before RA I had cervical cancer. I just think my body doesn't absorb calcium well at this point in my life.
Maria

Brian
Since the recent removal of Vioxx, a Cox-2 inhibitor from the market, would you still encourage the use of Celebrex? And does Celebrex have a different chemical make-up?
I do realise that all such decisions are personal and you are just sharing with us what you personally are doing but, I would appreciate your thoughts on the subject.
Marica

With each method of COX -2 inhibition there are slightly different courses of action. Hence the two unique patents on Vioxx and Celebrex. Do they both cause problems? The manufacturer of Celebrex says that their studies did not show the adverse effects of the Vioxx group, but they are undertaking a separate set of studies (not required of them) to establish this for sure. That to me is the mark of a company that not only is covering their financial ass, but is perhaps also genuinely concerned with more than the bottom line. The FDA has not asked them to do this at a significant expense. (On the other hand some risk management consultant probably told them that it was the prudent thing to do.) I have been taking very low doses of Celebrex. I see a cardiologist for other issues that were of interest to me, not related to clinical cardiac need or cancer. He reminded me that while there have been issues with some individuals and cox-2 inhibitors (Vioxx), the issue in the news is a reflection of legal/financial defense and to pay attention to the small numbers of individuals (out of millions that took the drug) who were impacted negatively by it. The data that revealed the problem has not identified what those who had a negative reaction to it had in common. So essentially while those impacted were a small number, even one is too many if you DO NOT NEED the medication. When it comes to chemoprevention, the argument could be easily made that we do not need the medication and therefore it is not worth the unknown level of risk. So I began looking at alternative cox-2 inhibitors. Certainly the naproxen avenue which is over the counter as Aleve is one option that has an extremely low adverse reaction rate, (low enough for the FDA to move it from a Rx drug to and over-the-counter drug), and then there are herbal cox-2 inhibitors as well. A trip to any health food store will allow you to locate a variety of herbal combination supplements (some with 8 or more herbal ingredients) that have some of the same cox-2 reduction effects. For those with any concerns, these would seem the most appropriate, though their strength will be significantly reduced. But there is not an established level of inhibition which has been determined to be effective in recurrence prevention (and published as such), so perhaps these would offer enough from a chemoprevention standpoint, and even enough to alternate with the Aleve that I take for my many back problems, (and inflammatory pain), from falling out of the sky in helicopters too often. This doesn't answer your question with a finite answer, but it is the best I can offer.

Brian
You explain things so succinctly...thank you, I appreciate your taking the time to do so.
Marica

Isn't COX2 over-expression a component of active disease? Meaning if you don't have active disease a COX2 inhibitor provides no benefit from a chemo-prevention stand point. Is this not the case?

-Brett

As far as the hard science is concerned, this is a chicken or the egg kind of situation which has been defined in general terms at this point in time. Most of the researchers that I have spoken with believe that it is a precursor event, and not a by-product event. Yes it is a component of active diseases many times, but the appearance of it often precedes the symptomatic disease. So the question is, is it a facilitator and promoter or not?

Seems to me that Gendicine falls into the same "Chicken or the Egg" paradox.

Reading their claims it sounds very promissing.

I have all but bought tickets to Beijing. :-)

Without exception; every one of the 26 Dr's I've seen since Dx (some of them of Chinese disent) have dismissed Gendicine as rediculous.

http://www.sibiono.com/sites/admin/enmain.jsp?catalogID=58

Of course, that's what the establishment thought of Pasteur too.

Maybe the best vector to consider is AAV2 based on the recent announcement from Penn State.

http://live.psu.edu/story/12505

Hope. Is this what it feels like?

Brian, Thanks for the information and the article link. Since my husband's BOT cancer diagnosis in January, I've spent a great deal of time researching H&N cancer, treatments - traditional and complementary. Regarding the COX-2 inhibitor, are you familiar with an herbal product called Zyflamend -often recommended by Dr. Andrew Weil on his website, as a substitute for a prescription COX-2. A few of its key ingredients are turmeric (with turmerones and curcuminoids), ginger, and green tea, among others. I would be concerned about my husband using prescription COX-2 drugs since he has had liver problems in the past (although his liver tests have all been normal for six years now). Also, my husband is just 7 weeks post radiation. He never had to use the peg except to get extra water. He still has it. Would there be any issues with using the peg for green tea consumption? I'm most interested in anything that would prevent recurrence especially since he was just told there is a possibility he may have a tiny one in the exact spot that they did the surgery and then radiated. Tests are in progress. I, also, would love to see more on this topic.

This may be of interest -- almost 2 years ago I was diagnosed with prostate cancer, which eventually turned out (after tests at Hopkins) to fall into the "insignificant" indolent form common in older men (it has been found that 40-50% of men in their 60s and up to 80 % of men in their 80s have some cancer in their prostates, based on autopsy studies, but in most cases they never know and it never progresses). I am currently enrolled in a study at Hopkins which is monitoring us for any progression over time, the goal tbeing to develop better predictors for aggressive vs. indolent disease.

I am also under the care of a medical oncologist who specializes in PC and who closely follows the literature on emerging adjunctive therapies since diet and lifestyle play such a large role in PC (and other cancers). One research finding is that suppression of COX-2 is linked to a slowing or halting of PC proliferation and recurrence (there is quite a bit of literature on this). Consequently this oncologist prescribes Celebrex to his PC patients who are able to tolerate the drug and who have no cardiac issues. I take 200 mg/dy although 400 mg/dy is often recommended.

My PC is really a non-issue now, my last two follow-up biopsies were unable to find any cancer and according to the PI, based on 10 years' of study data, I have less than a 5% chance of any progression.

However I was diagnosed with HNC three weeks ago and the doctors at Hopkins and Sloan both compared CT scans taken in October (when it was misdiagnosed as a neck abscess) to those taken last week and say there has been minimal progression in 8 months (however it was already stage IV in October, alas!). I wonder if the Celebrex plus the other anti-prostate-cancer measures I have taken in past two years have had some small impact on the (much more serious) SCC disease as well.

I intend to continue to take the Celebrex as long as I can swallow the capsules!

Barry Cooper

Phoooey! I just went to my local health food store, which always SEEMS to have every herb, tincture, mineral, vitamin and extract under the sun and looked for circumin. Couldn't find it (I forgot it was in turmeric so maybe they did have that and I didn't see it) and the young woman I talked to had never heard of it (but she was just a shelf-stocker so that doesn't mean too much--in fact this store is a coop and so she may only work there a couple of hours a week for all I know).

It seems that with all the recent news about this it should be somehting a health food store has in stock. Anyway, they will try to order it for me. I hope it's not a softgel since I've yet to figure out how to get those down when I can't swallow pills.

Hi Nelie, first time I've checked in for weeks now. After all we went through with my husband in 2005, I was diagnosed with an early stage breast cancer in early November (via a routine screening mammogram) and have been too caught up in my own treatment. Glad I came back as the news articles are pertinent to many kinds of cancer. At any rate, we bought New Chapter's TurmericForce at our local health food store. You can buy it online from Vitamin Shoppe or elsewhere, if you can't find it in a store. Also, check out the 12/22/05 aricle called "Sabinsa's Curcumin C3 Complex Ingredient Preferred by M.D. Anderson Cancer Center". I think we'll order this brand next time around. You might also check up on Zyflamend from New Chapter which is said to act as a natural COX-2 Inhibitor. I've seen the recent articles on melatonin and Vitamin D as well. We have been working on a anti-cancer diet/supplementation program - especially now that cancer has affected both our lives. Hope things are well with you. Jerry is doing pretty well. Still getting acupuncture. His saliva keeps returning. He is eating just about everything now, even breads. He still considers it a chore and tiring, but I can really see the improvements. A month ago, it took him 30 minutes longer than me to eat less food at dinner, and now he keeps up pretty well. It has been a year now since his diagnosis and almost eight months since the end of radiation.
Connie

Hey Connie, it's good to see you here!

I'm sorry to hear you've been fighting your own breast cancer battle. My breast cancer was also caught very early and thanks only to a routine mammogram (too small and deep to be felt in a breast exam). Thank goodness for early detection there, huh?

I read the article about Sabinsa here and in the request form I filled out at our local co-op I requested the Sabinsa brand. But I actually went later and found Sabinsa's website and it isn't really clear to me that they put out a brand that can be ordered wholesale by our co-op -- it looks like they may make stuff more on demand for medical trials. The person who I spoke to there had never heard of Sabinsa and she gave me the impression she'd heard of most brands.

I actually have a bottle of Zyflamend softgels and the problmem I have is they are softgels. BIG softgels. And I can't swallow them right now! I think I'd prefer to get soemthing that's just circumin, or pretty much just circumin, anyway, and is standardized which some of the turmeric supplements are not. I found that "Source Naturals" puts out a brand like this--and it also has something else in it that's supposed to help the body absorb the turmeric. And supposedly they carry it at the co-op where I just put in a request (I wish I had thought to say "tumeric" and not "circumin"). Anyway, I'm planning on going back there today to look.

I'm planning on trying out acupuncture for the new year--anything that will help! I'm hoping maybe it could help with the swallowing too. I'm glad Jerry's doing so well. I hope I'll get to where he is eventually.

Take care of yourself, and feel free to send a private message if you need any support on the breast cancer front (but there is so much more support available for that, I've found, isn't there?)

Nelie