Need Info On Supp.

Hello,

I am trying to help my friend who has been diagnosed with Lymph nodes in the neck cancer. I'm new to this whole ordeal. I have some questions.

1.Is this forum in anyway affiliated with commercial provider of supplements or alternative treatments? Doing so would be unethical and I don't want my friend to be given advice from forums whose ultimate goal is to exploit desperate peoples vulnerablities.

2.This said, how do I go about verifying this or any other forum objectives and affiliations are good?

3.Finally the crux of my being here. How can I validate claims of supplements? I list them here and if you can tell me how to VALIDATE and find RELIABLE SOURCES I'd be so happy!

* Spirulina
* Blue-green algae
* http://www.allicinfacts.com/allicin01.htm Allicin powder extract - Allisure, Allimax, Alliforce, Allitru, Alli-C

http://www.mrcabbagehead.com/2008/04/28/five-potential-natur site says these are actual cures!

* Pau d’arco (Tabebuia impetiginosa)
* Gaviola (Annona muricata and Annona montana)
* Tayuya (Cayaponia tayuya)
* Barbed skullcap (Scutellaria barbata)
* Zeolite

I do not want to put anyone on the path that will lead to know where so it is important if I can validate before I pass on information! I just don't have any idea how and I unfortunately I can not find an Oncologist willing to councel with me.

Please help me!

I cannot say enough good things about  this site but I do not have verification for you either.

Only a couple of pp have masqueraded with the intention of luring patients to their supplement sales.  You'll know them right away by their email notes that show up here and there, irregularly.  

I'll go out on a limb and respond here.  As a couple, my husband (stage four nasopharyngeal) and I are open to all methods of medical care.  My husband is of asian ancestry so we are very familiar with what is called "alternative" in the west.

As someone who sits squarely in the middle regarding alternative medicine, I can give you my objective opinion.  Please keep in mind that it is only that.

The medical community is less willing to look at alternative medicine because the research/clinicals have not been done.  We should be grateful for this as it provides some measure of responsibility/accountability.  The downside of this is that they lack knowledge about potentially organic solutions to our problems.  I liken this to chiropractic medicine which was once shunned thru the states and now widely accepted and even covered by many insurances.  Further driving this are the pharmaceutical companies who currently benefit from the sales of their meds. 

From the alternative side, they have not done the proper trials to prove the theories so that the medical community can go out on a limb.  The few trials being done are by the more progressive teaching facilities - Johns Hopkins, Mayo Clinic and National Cancer Institute - to name a few.  This makes me skeptical of the alternative meds because if they are so good then why can't they make their claim?  But, organic must be better as it is natural right?

Okay, so there is so much more to this than what can go in one posting.   Let me tell you now how we made our decisions and what we decided.

We decided that since my husband's cancer was stage four, we didn't have time for clinicals and hypotheses.  We needed proven protocols.  If he had been stage one or two, we might have considered alternative only.

He had the typical 36 radiation with cisplatin 170 mgs x 3 with two adjuvant chemos of cisplatin and 5FU 24 hour infusions x 4 days.

Our oncologist fairly said that if my husband took a lot of natural supplements, he couldn't determine what combo might be affecting him negatively when they did.  In other words, which veggie spoiled the stew?  So, we went with what we thought might help the most - glutamine to boost the immune system and probiotics/acidophilus to aid digestion.  The oncologist agreed to these as they had no other ingredients and there does exist some clinical work on both.  

To your question of verification - I would hook up with a department head at a progressive teaching hospital or cancer treatment facility.  Johns Hopkins and NIC/NIH both have information on alternative treatments including current clinicals they are running.

I hope this has been helpful.  Feel free to contact me if you have further questions about our choices.  Good luck.

 

I have been on here for several months; I am 7 months out of treatment for tonsil cancer, chemo and radiation.

I have never seen any commercial postings here, just advice from people going through the same thing I have been. Most of the advice here is very good advice, but, as with anything, do your research online and have your friend discuss any supplemental or non-prescription treatments with his/her oncologist.

If any of the things you listed actually worked, I'm sure someone's oncologist would be using them. If any of the "cures" worked, why is the American Cancer Society still in business?

The best things for your friend are to be there for him/her in any way you can. Good nutrition (very important during treatment), pain and anxiety control ( this means meds, ask for them if you need them, most docs have no problem giving them to you, if not, you need another doc), hydration, symptom control (both for the disease and the treatments). Do make sure that you or someone close to your friend goes with to the doctor's visits, as most cancer patients are usually too shell shocked to remember to ask questions ( write them down beforehand) or the answers to them ( take a notebook to the docs office)

If you have any questions here, just ask. Someone here has been there before, most likely.

Best wishes,

Mike

 

i think everyone is here to support each other...i haven't seen any posts that implied hidden agendas.

my boyfriend is stage IV head and neck, unknown primary.  he didnt feel he had the time to find an alternative therapy.  he has had the typical radiation/chemo and a clinical trial of induction chemo.  what he did do is have lots of raki sessions during all of this.  it relieved his anxiety and put him in a better frame of mind to deal with pain.

 

I read some of your replies, and pretty much agree with most of the cautions.  supplements are not usually put through studies or trials like medications are so there can be serious side effects or situations that you should not take them and you wont know ahead od time.  That said, try this web site, www.mskcc.org/mskcc/html/11570.cfm.  It is for the Sloan-Kettering cancer institute and they have an extensive and unusaully detailed info on many supplements, including links to studies that have been done and its outcome.  They also give contrindications, known side effects and drug interactions.  Some of the supplements/herbs listed there actualy say do take if doing chemo, radiation or have cancer.  Please, be aware that alot of these herbs will say anti-cancer, but most of that effect is referring to studies done of the compunds in vitro which is I believe in a petri dish, not in a living body and in less likely in a human body.  Alot of things work great in dishes and fail to have the same result in a live body.  Also look up words you do not know or are not sure of.  be sure that you know what they are talking about.  I look at everyone one the list and made note of the ones that were of interest and what its effects are good and bad.

the cancer treatment centers of america  use  a natuopath doctor along with the medical oncologist, he cured my cancer..she supported my body thru treatment there are alot of people who try alternitive treatments, i do believe that they are as important as the medicine and the raditation, but so many companys prey on people with health problems to sell everything from horse dung to sugar water, and it is true that some natural treatments can interfere with rx's so a natuopath is a very important person in recovery, and support. i was so lucky to have a hospital that provided that service. but i am sure that other hospitals have information on that type of doctors, they have a 4 year degree and are really  doctors, that would be the person i would have,they are worth ther weight in gold too. sometimes we take so much stuff that it is not effective.in the healthfood stores is a good place to find a natuopath, check for the degree ask questions.god bless .