Interested in cutting edge research for Oropharynyx Cancer
Helo everyone! I am currently researching Oropharynx Cancer and am interested to share and interact based on medical and unbiased literature..
In my treatment, I do not blindly follow the suggestions made by "doctors": without thoroughly educating myself; embrace the information and reach my conclusions, further edited by experienced based information from sources that "don't have a dog in the fight". Being the patient, the "dog in the fight" I have is succesful treatment for patients. I realize some will do whatever is suggested, and that's fine, but not helpful in terms of the interaction I am seeking, or advanciing the cause through daily evolving information. I am passionate about the things that grab my curiopsity and started this mission after revealing lackluster care, questionable approaches, conflicting opinions among "experts", and an obvious overiding mptivation geared towards financial gain.
My immediate interest is about what treatment(s) work well considering the benefit to risak ratio; Medical Marijuana role in cause and cure (purported ability to kill cancer cells), and what you would want to change about your path in treatment.
The combined intellect of millions of people now able to communicate throughout the internet is a powerful knowledge base today.
Looking forward to helping someone else who might have overlooked, people not happy with their treatment and outcome(s), etc.
Comments
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I think the Marijuana angle
I think the Marijuana angle is interesting, certainly beats other alternative treatment paths like liquefied Kale and garden greens. It will aid in palliative care as the cancer metastasizes into the brain, lungs, and central organs. Beats the opoid addiction that tends to come with prolonged treatment. Meanwhile, at 18 months post conventional treatment, my moneygrubbing ENT is back from his surgery rounds with Drs. Without Borders and says I'm still clean.
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Adjunctive or single therapy I have found that works is Curcumin
In my search, I have been using a gargle, and/or you can swallow it, but bioavailabilty is not as effeective as (contact) with the tumor/ulcer itself. I get immediate pain relief currently, 2 weeks prior to beginning treatment(s). I have chosen single modality; stereotactic radiation, as single modalities are reportedly the first choice, rather than 2 or 3, i.e. surgery, radiation, and checmotherapy. I have "Norco's", but will not use them because of opening the possibility of an opiod addiction. The more benign the treatment is like Curcumin, along with the benefits and effectiveness (they) have, is what moves it up into my first line choice(s). I have found Ibuprofen is more robust in terms of taking down infalamation, than Tylenol.
What I am looking for today (currently) among other experiences; is what strain/type/name of marijuana is said to be effective for Oropharynx Cancer(s)? I have passed the risk benefit equation, and have included it as a modality/adjunctive treatment which will be included in my approach. The answer seems vague because retailers rename this stuff, and get away from what it really is. I am looking for a cancer cell killer, not a pain reliever at this point. What I have read is generally the Sativa is the cancer killer, while Indicas with high CBD and low THC is for pain. The most important question is: What does one ask for by name? It would be easier if it was labeled like foods are, instead of going by apperance and smell, combined with a name that is rarely descriptive of what (it) does. I have read and NOT verified Northern Lights with high THC that kills cancert cells? Also, Charolotte's Web for pain. Any feedbackl opn this?
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Nonsense
THC, whether it be sativa or indica, "killing" cancer cells is fantasy. NO credible evidence. Nothing. Nada. Zip.
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not!
I am looking for a cancer cell killer
There is zero science based studies indicating THC offers any benefit in "killing" or "curing" cancer. It has properties to ease the pain associated with treatment but nobody should heed anything related to use of THC for healing purposes.
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Ron and Donfoo, thank you.donfoo said:not!
I am looking for a cancer cell killer
There is zero science based studies indicating THC offers any benefit in "killing" or "curing" cancer. It has properties to ease the pain associated with treatment but nobody should heed anything related to use of THC for healing purposes.
Ron and Donfoo, thank you. Bill
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NPOE,
From reading your other posts/topics, it seems you prefer to go against the grain and not want to take your doctors advice. That's your choice and we wish you well. Me, I believe in science based research and treatment. My cancer was so rare that my doctor wasn't sure how to treat it so it was done with a little overkill. Others with a similar dx had different treatment options.
Google sent me here where I got the best information regarding my C. Those who have walked through the process know best.
Go right ahead and try the pot or whatever oogah boogah medicine you want. I'll stick with tried and true. And no, the vast majority of doctors and medical staff actually want to help patients heal. It isn't about the money. If you look hard enough I'm sure you'll find one or two who might be a bit greedy. It's human nature.
Hope you live through it long enough to survive.
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Dear NPOE - I wish you wellnewpairofeyes said:Adjunctive or single therapy I have found that works is Curcumin
In my search, I have been using a gargle, and/or you can swallow it, but bioavailabilty is not as effeective as (contact) with the tumor/ulcer itself. I get immediate pain relief currently, 2 weeks prior to beginning treatment(s). I have chosen single modality; stereotactic radiation, as single modalities are reportedly the first choice, rather than 2 or 3, i.e. surgery, radiation, and checmotherapy. I have "Norco's", but will not use them because of opening the possibility of an opiod addiction. The more benign the treatment is like Curcumin, along with the benefits and effectiveness (they) have, is what moves it up into my first line choice(s). I have found Ibuprofen is more robust in terms of taking down infalamation, than Tylenol.
What I am looking for today (currently) among other experiences; is what strain/type/name of marijuana is said to be effective for Oropharynx Cancer(s)? I have passed the risk benefit equation, and have included it as a modality/adjunctive treatment which will be included in my approach. The answer seems vague because retailers rename this stuff, and get away from what it really is. I am looking for a cancer cell killer, not a pain reliever at this point. What I have read is generally the Sativa is the cancer killer, while Indicas with high CBD and low THC is for pain. The most important question is: What does one ask for by name? It would be easier if it was labeled like foods are, instead of going by apperance and smell, combined with a name that is rarely descriptive of what (it) does. I have read and NOT verified Northern Lights with high THC that kills cancert cells? Also, Charolotte's Web for pain. Any feedbackl opn this?
Dear NPOE - I wish you well all throughout treatment...sounds like your radiation for oropharynx cancer will be starting up soon. The side effects may be rough, and I commend one with your inquiring mind who explores options. Please realize that the reasons to have confidence in the medical profession far outweigh the risks of witholding that confidence. Good luck with everything.
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Marijuana
The only thing I can contribute is I live in California and marijuana is now legal. As such, my husband's healthcare team did recommend its use for palliative care, but not as a cure. Also, my husband was diagnosed with stage 4 cancer, and it was recommended that he do 2 out of the 3 standard procedures. He chose chemo and radiation. Surgery was out of the question as his tumor was too close to his carotid artery.
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Tommyodavey, I'm in agreementtommyodavey said:NPOE,
From reading your other posts/topics, it seems you prefer to go against the grain and not want to take your doctors advice. That's your choice and we wish you well. Me, I believe in science based research and treatment. My cancer was so rare that my doctor wasn't sure how to treat it so it was done with a little overkill. Others with a similar dx had different treatment options.
Google sent me here where I got the best information regarding my C. Those who have walked through the process know best.
Go right ahead and try the pot or whatever oogah boogah medicine you want. I'll stick with tried and true. And no, the vast majority of doctors and medical staff actually want to help patients heal. It isn't about the money. If you look hard enough I'm sure you'll find one or two who might be a bit greedy. It's human nature.
Hope you live through it long enough to survive.
Tommyodavey, I'm in agreement with you. I choose to research and find a doctor and follow his advice. I'm hindered more by our HMO Insurance, than by a doctor. I wanted a ACS teaching hospital and it took a while to get my insurance to allow it. I have oropharyngeal squamous cell carcinoma HPV. It's behind the pharyngeal wall. I also wanted the robotic surgery. Does anyone have experience with this? They said they'll do the robotic surgery then they're going to strip out the lymph nodes on the left side of my neck. I wanted the surgery first, due again to my insurance. I'll still face the radiation and chemo, but I'm hoping for lower doses.
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Klingles, mine is between myKlingels said:Marijuana
The only thing I can contribute is I live in California and marijuana is now legal. As such, my husband's healthcare team did recommend its use for palliative care, but not as a cure. Also, my husband was diagnosed with stage 4 cancer, and it was recommended that he do 2 out of the 3 standard procedures. He chose chemo and radiation. Surgery was out of the question as his tumor was too close to his carotid artery.
Klingles, mine is between my carotids as well. They said the radiation and chemo will kill the cancer and is still considered a first line treatment. Prayers for your spouse.
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momall25ofumomall25ofu said:Tommyodavey, I'm in agreement
Tommyodavey, I'm in agreement with you. I choose to research and find a doctor and follow his advice. I'm hindered more by our HMO Insurance, than by a doctor. I wanted a ACS teaching hospital and it took a while to get my insurance to allow it. I have oropharyngeal squamous cell carcinoma HPV. It's behind the pharyngeal wall. I also wanted the robotic surgery. Does anyone have experience with this? They said they'll do the robotic surgery then they're going to strip out the lymph nodes on the left side of my neck. I wanted the surgery first, due again to my insurance. I'll still face the radiation and chemo, but I'm hoping for lower doses.
I had the TORS on my base of tongue and it worked great. If not for the robotic arm they would have had to break my jaw to get down so low in my throat so I'm very grateful. There was a month in between my tongue surgery and the right neck dissection. The neck surgery sounds bad but it isn't painful. They cut a bunch of tendons and muscle but you'll adapt okay as long as your doctor can avoid cutting a nerve. My cancer was below a nerve so it took over a year for my arm to stop hurting but he didn't cut it. And I also had lower dose rads. Somewhere in the ballpark of 5700 instead of 7000 gys. So far so good as far as side effects go. Good luck going forward!
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My only reservation about
My only reservation about using marijuana is Dr Gillison, the doctor who proved the connection between oral cancer and hpv, says marijuana seems to hurt the immune response to hpv. She has written about it in some of her published work. She can not explain why but claims that marijuana users have a harder time clearing the virus. I do not if this is true or not, but it gives me reservations.
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Medical Literature
You flatter yourself as being much smarter and wiser than you are. My advice is to find a doctor who is very good and will talk to you about what is important to you and than follow his or her advice. It is incredibly naive and arrogant to think your judgement will be better, YES you are the patient and have a dog in the fight but that can hurt your judgement as much as it can help it, doctors are famous for screwing up when dealing with their or their family members. If you have ever listened to good doctors debating a medical study it is incredibly nuanced arguing control group not matching experimental group, experimental group not be reflective of normal population, using wrong statistical test, researcher is known for bias etc, etc, etc,A good physician also has a load of knowledge / experience you simply don’t have access to from treating patients and studying medicine for decades. Often things are changing very fast in medicine and the literature often lags behind. What is your understanding of statistics? If you do not have a very strong background in statistics you cannot understand the literature nearly as well as an excellent physician.
Yes i I am a physician but have a lot of experience as a patient and after several missteps came to this conclusion for myself. I have an illness in which I was already an expert but it Is extremely hard to be objective about your own health. I have an advantage at using inside network of knowing physicians who are excellent but I find an excellent one make sure they understand my values and goals and do what they say
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I am in Colorado where MJ is
I am in Colorado where MJ is legal (for the most part). The kids I am associated with were keen for me to try it, but the more I looked, the more I became skeptical. I consumed a fair amount back in the '70s, but none since then, so I don't, per se, have a bias or preference.
But, bear this in mind: MJ became a form of relief back when most of the anti-nausea drugs were still under patent and obscenely expensive. Those drugs are now generics, and I was issued two different drugs, +40 doses each, at the start of treatment, and the cost was around $20 total. So 40 doses of MJ is probably about the same price.
Also, and my kid the ER doc made this point, the effects of MJ on cancer patients, for any purpose, have no clinical studies behind them, and medical practitioners are uneducated on their effects, AND ESPECIALLY THEIR INTERACTION WITH THE OTHER DRUGS IN THE CHEMO COCKTAIL. Because MJ is still illegal in parts of the country, research will probably be slow in coming. So, yeah, it may make you feel better, but maybe not. My kid will not use or tolerate proximity to MJ just because of the issues regarding medical licensure; his career is not worth the risk. His particular interest is in Toxicology, and he is slated for a fellowship in that. He sees the mysterious chemical interaction cases, and drug interactions can be really messy, and quite unplanned. So, despite Colorado statutes, the country remains schitzo on the issue. If you do it, and things go bad, you are in unexplored territory.
I personally took no pain meds, and the anti-nausea drugs seemed to be enough. My marching orders for my docs was at all times we will do what in your opinion is medically optimal. I got perfect results from exceptional people, and would alter nothing if I had to start over tomorrow. I don't see that as stoic, I simply wasn't in pain, wasn't troubled by the mask, and didn't eat enough to really get sick. I am now (18 months after) really glad I didn't do pain meds because it seems like that is a really tough habit to kick once it gets started.
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Yeah, i used to love mjAnotherSurvivor said:I am in Colorado where MJ is
I am in Colorado where MJ is legal (for the most part). The kids I am associated with were keen for me to try it, but the more I looked, the more I became skeptical. I consumed a fair amount back in the '70s, but none since then, so I don't, per se, have a bias or preference.
But, bear this in mind: MJ became a form of relief back when most of the anti-nausea drugs were still under patent and obscenely expensive. Those drugs are now generics, and I was issued two different drugs, +40 doses each, at the start of treatment, and the cost was around $20 total. So 40 doses of MJ is probably about the same price.
Also, and my kid the ER doc made this point, the effects of MJ on cancer patients, for any purpose, have no clinical studies behind them, and medical practitioners are uneducated on their effects, AND ESPECIALLY THEIR INTERACTION WITH THE OTHER DRUGS IN THE CHEMO COCKTAIL. Because MJ is still illegal in parts of the country, research will probably be slow in coming. So, yeah, it may make you feel better, but maybe not. My kid will not use or tolerate proximity to MJ just because of the issues regarding medical licensure; his career is not worth the risk. His particular interest is in Toxicology, and he is slated for a fellowship in that. He sees the mysterious chemical interaction cases, and drug interactions can be really messy, and quite unplanned. So, despite Colorado statutes, the country remains schitzo on the issue. If you do it, and things go bad, you are in unexplored territory.
I personally took no pain meds, and the anti-nausea drugs seemed to be enough. My marching orders for my docs was at all times we will do what in your opinion is medically optimal. I got perfect results from exceptional people, and would alter nothing if I had to start over tomorrow. I don't see that as stoic, I simply wasn't in pain, wasn't troubled by the mask, and didn't eat enough to really get sick. I am now (18 months after) really glad I didn't do pain meds because it seems like that is a really tough habit to kick once it gets started.
Yeah, i used to love mj through college and I wonder if it hindered my immune systems fight against the virus. I respect it’s use as a pain reliever not produced in a lab, but I worry it could encourage a recurrence. Especially after reading Dr. Gillisons opinion on it. I respect her work.
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Tommyodavey, thank you fortommyodavey said:momall25ofu
I had the TORS on my base of tongue and it worked great. If not for the robotic arm they would have had to break my jaw to get down so low in my throat so I'm very grateful. There was a month in between my tongue surgery and the right neck dissection. The neck surgery sounds bad but it isn't painful. They cut a bunch of tendons and muscle but you'll adapt okay as long as your doctor can avoid cutting a nerve. My cancer was below a nerve so it took over a year for my arm to stop hurting but he didn't cut it. And I also had lower dose rads. Somewhere in the ballpark of 5700 instead of 7000 gys. So far so good as far as side effects go. Good luck going forward!
Tommyodavey, thank you for the reply. It helps knowing you've already walked the path and it worked. They told us they would have to break the jaw .... maybe because the C is behind the pharyngeal wall and hard to reach. The decision to go with TORS was to avoid higher doses of rads/chemo. How long ago did you have your last treatment?
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The DRJ820, THANK YOU forTheDrj820 said:My only reservation about
My only reservation about using marijuana is Dr Gillison, the doctor who proved the connection between oral cancer and hpv, says marijuana seems to hurt the immune response to hpv. She has written about it in some of her published work. She can not explain why but claims that marijuana users have a harder time clearing the virus. I do not if this is true or not, but it gives me reservations.
The DRJ820, THANK YOU for this information!
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