it's almost time for me to decide how i'm going to fight this thing, seems like radiation and chemo are the only alternatives mentioned, which seem to me to be pretty damaging in the long run. has anyone had any experience with alternative therapies?

Sorry but radiation with or without chemo is the only way to fight this besides surgery.

There are many other options which will claim to be cures in the end, its too late for the patient when they realize conventional methods are what works.

Jane,

I believe I read that you were being seen at Sloan. If that's the case then you are probably going to receive state of the art treatment options which may include surgery but will definitely include radiation. Chemo most likely will be recommended due to the nodal involvement.

Jane,

I saw that you are considering the robotic surgery. Are they recommending the da Vinci surgical robot? I have heard of this for difficult to reach surgical sites.

If you are a candidate, we would like to hear how that goes. The surgery with the robot is less invasive and is supposed to have much better recovery times.

Let us know what your doctors recommend.

Jane

Unfortunately the only reliable alternative to surgery and/or radiation and chemotherapy is Hospice care. Last year's TV special on Farah Fawcett drove home just how illusory and bogus "alternative" therapies are (especially the scene where her German doctor celebrated the "cure" about six months before she died). Having Run a marathon is great preparation for oral cancer treatment (TX) and is often used as a metaphor for sticking out the TX even by doctors who have never run one.
We've had some posters here on OCF who touted "alternatives" but we never heard from them again - obviously if these "alternatives' had really worked, those posters would have been back with a big "I told you so", but dead people don't post.
Charm

You are at the premier cancer center in the US, being seen by the best doctors in the US in most disciplines, and you are considering doing an alternative treatment that is different than what has been shown to be successful in thousands of patients. The treatments that have clinical evidence of working are not easy, even difficult. But they have good success rates. And yes, there are quality of life issues over a lifetime in many people. Just remember that in order to have what you refer to as "pretty damaging " effects, those consequences, that most of us live with as long term survivors, only happen to the people who survive to go on with their lives.

If you are going to try some alternative to what the current NCCN guidelines are recommending, which have been proven to work by the major NCI designated cancer treatment centers in the US, I hope you will compare long term outcomes and survival, in an unbiased manner before you decide to do something "alternative" instead of what is known in thousands of patients to work.

ouch, that smarts. i know i'm still living in a fantasy land where i'm going to wake up and my life will be back to normal.
thanks for all the replies. i know i'm lucky to have gotten into msk. what i'm really interested in is alternative methods to support my immune system, etc, while i'm undergoing treatment. i've always been so healthy, and avoided doctors, and am having a hard time with the realization that now i'm so dependent on the medical establishment.
again thanks for all the input, and sorry for the whining.

Whatever you contemplate just make sure that your cancer treating docs approve. Remember their's and your primary goal is to kill the cancer. EVERYTHING else takes a distant position. To do anything that might, however slim that chance is, decrease the effectiveness of the main treatment is irresponsible.

What whining? Compared to the way that I bitched & moaned, your very reasonable dissatisfaction with being transmuted from super healthy to Cancer patient simply does not rise to the level of whining. It is hard to believe that in the 21st Century, the "best" therapy available is to dissect you and then literally burn your cells and then poison them. The TX is barbaric.

As for taking action to help yourself get thru this TX, OCF calls this "adjunctive therapy" not alternative since it does not replace surgery, rad,& chemo. Everyone varies, but yoga, meditation, pilates helped me. True, I had to quit the formal classes and rigorous practices but I could still do "mountain pose" etc. I did quit the weight lifting entirely though during TX as just getting off the couch for radiation was exercise enough at one point.

And yes, I still wake up some mornings and fervently hope that this was all just a bad dream, but as you are finding out, it's all too real. But just read this forum and see how many people have gotten thru this- you will too
charm

I probably would have been less blunt in my post if you had said adjunctive and not alternative. One is supportive as you say, the other is a substitution. I am all for supportive things as long as your docs sign off on them. Surprisingly, some immune system supportive vitamins that we consider commonplace in normal people, decrease the effectiveness of some of the treatments, that's why the comment to include your treatment team in all your decisions.

brian, u mention that some supportive vitamins and medications decrease effectiveness of treatment.

my friend has been advised to take B12 vitamin injections to avoid B12 deficiency. would this adversely affect the treatment?

I don't believe that that was one that was pointed out as causing complications. But in all cases his doctor has to be the determiner of what is appropriate and what is not. The rule is if the doc signs off on it, why not take as many supportive things as you wish, they clearly know more about these interactions than any of us. I would want to know from the doctors that a B-12 deficiency was an expected treatment complication prior to supplementation, prior to assuming that it would do any good or not.

thank you brian.

every date for an MRI brings fear.
we did an MRI again today. shows some nodule at the anterior part of the tongue. but it showed a similar anomaly in May 2010, which when checked by way of actual examination showed nothing. our doc is confident that when the first incidence was a well differentiated squamous cell carcinoma and no node was formed, and the test on lymph nodes were negative..there just cannot be a recurrence. hoping the doc is right.

thank you for your support.
regards
-anupama

I'm betting this is true at many of the cancer centers but we found Sloan to have a whole person approach.
While my husband's plan was radiation and chemo, he was referred to a dietician who met with us several times, offered a smoking cessation specialist and a therapist if he felt he needed it. At every visit, the nurses and doctors checked into how he was doing medically and emotionally. After treatment, they reminded him to walk regularly, to build his body back up,etc.
There are many things patients can do to help heal their bodies.
And working WITH your medical team on it is encouraged. I think that's why where you go is so often emphasized here.

There's a huge difference between the terms "alternative" and "adjunctive" as, by now, you've been educated. Your oncologist and dietician should be able to help you with adjunctive Tx. Most of the literature I have read does not recommend vitamins and/or herbal stuff during treatment. The most important thing during Tx is to stay well hydrated and take in enough calories to facilitate healing. I wouldn't recommend taking anything other than what the doctor tells you is ok, even "over the counter" meds.

I would like to add the term "complementary" to the list. To me, "alternative" is something one takes instead of what the doctor ordered whereas "complementary" may be in addition to the doctor's recommendation. I guess "adjunctive" is a similar word, but to me it is an addition the doctor may be in favour of or recommend whereas "complementary" has more of a "natural" or "self medication" connotation (just my take on the difference between the two). And before I get blasted, I believe that "natural" should never be confused with "safe" or "good"(although some may well be). After all, cyanide is natural and it is one of the deadliest substances on the planet (as we learned the day my sister at age 9 triumphantly announced she had just swallowed 9 cherry stones and found herself bent over my father's knee with his fingers down her throat). And we all know how safe that natural leaf first cultivated and smoked by the native Americans is. What was its name again ...?

There are some great websites that allow you to input all your medications and it will report possible interactions which can be discussed with a doctor. A word of caution before racing off to the google "drug interactions": Like "natural" the word "interaction" can be good and/or bad. Whilst we often talk about the bad effects of drugs as interactions, there are desirable interactions too. Unfortunately, the interactions database doesn't know the difference so will just spit out the result and it is up to the user to figure it out (and this where the medic comes in handy). A classic example of a "good" interaction is the use of chemotherapy in conjunction with radiotherapy. Radiation works well but if chemo is added, it works better.

A web based interactions database has its uses and is a good back up for those who might be taking an over the counter medication and forgot to tell their doctor. It may also be useful for someone who can't remember if it is vitamin B that interacts with their chemo or something else. Finally, it may also provide a starting point for discussion with one's healthcare professional around possible side effects and their management. In my opinion it is better than going forward blindly but never as good as talking to the doctor or pharmacist (who will also use a database to check for interactions). PS Nurses are particularly good at side effects and interactions - have you noticed?

If there was a really good interactions website, that wasn't trying to sell anything, that you could turn us on to, I think it would be a good addition for OCF to link to. We are all exposed to so many drugs under so many names, both proprietary and generic, that to have a first look there, and then checking with your doc would be useful... and maybe even advert a negative interaction. Post a couple that you like and let's have a look-see.

Don't be so defensive. I and others on the board that have been hard on the alternative posters, only maim those posters, then eat the young of those who insist that alternative is a viable path outside of proven medicine.