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#53596 08-17-2004 04:49 PM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#53597 08-17-2004 05:42 PM
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#53598 08-17-2004 06:56 PM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#53599 08-20-2004 05:19 PM
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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


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#53600 08-21-2004 04:32 PM
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#53601 08-21-2004 07:48 PM
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#53602 09-02-2004 04:57 AM
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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


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#53603 10-26-2004 12:58 PM
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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


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#53604 10-26-2004 02:22 PM
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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

#53605 10-27-2004 10:12 AM
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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


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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