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#58063 04-03-2006 05:45 AM
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Has anyone used or heard Aloe Juice? Friends recommend it to us saying the aloe juice can help the healing process and enhance the immune system. I checked the internet. Though there are some postings about the aloe effect on cancers. But the study smaples were not for ENT cancer patients and were done years ago. I'd like to get some first-hand info. Thank you.

#58064 04-03-2006 08:03 AM
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i drank some while having radiation but couldn't stand the taste, so i can't say if regular use would help much.


Diagnosed 6/05. Stage III SCC of the oral tongue. Nodes showed negative upon biopsy. 7/25/05 started Chemo of Cisplatin & Erbitux & 30 IMRT Sessions + daily Ethyol. 12/9/05, 75% hemi-glossectomy. Recovering since.
#58065 04-03-2006 11:47 AM
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I tried it, it burned so bad I could not tolerate the pain...
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#58066 04-03-2006 03:26 PM
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Contrary to the two previous posts, I drank aloe juice mixed with white grapefruit juice, I believe it was 1 part aloe 2 parts white grape juice , over crushed ice it was very refreshing, I think they called it a " california Cocktail" it relly helped with soreness and dry mouth. I would give this mixture a try, what have you got to lose that maybe you don't like it, but maybe you will and I found it very refreshing served this way.
lenny

#58067 04-06-2006 09:55 AM
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i agree that when mixed it was more tolerable. you also need to start right away and not weeks into radiation when the mouth is already feeling painful.


Diagnosed 6/05. Stage III SCC of the oral tongue. Nodes showed negative upon biopsy. 7/25/05 started Chemo of Cisplatin & Erbitux & 30 IMRT Sessions + daily Ethyol. 12/9/05, 75% hemi-glossectomy. Recovering since.
#58068 04-06-2006 03:52 PM
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No, but it makes a great laxative - could come in handy once those narcotics starting causing constipation. As far as the immune system - lots a luck. Great for those radiation burns topically.

See: http://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=aloe


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)
#58069 04-08-2006 12:26 PM
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Barry used cold 100% (edible) aloe from GNC throughout treatment -- right after coming out of radiation he would swish with cold water and then go into bathroom and gargle with the aloe juice. He would also gargle with it 2-3x a day. He picked this up from a listserv for people with laryngeal cancer -- many said it was the only thing that made the burning (during radiation treatment) go away.You have to use the 100% food-grade juice, which comes in a brown glass bottle, unflavored is best. The laxative property of this juice (really, more of a gel) has been removed in the processing, so you can ingest it but Barry didn't.

He got through his chemoradiation with his mouth in better condition than 95% of others according to his RO, whether this was just chance or due to his being especially diligent about mouth care (aloe was only one part) no one is sure. However, the RO asked him to write out all he had done to try and protect his mouth and skin and the nurse is suggesting a number of these to other patients.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#58070 04-08-2006 01:17 PM
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Well not to sound skeptical but my MO recommended colloidial silver with is also listed on Quackwatch. Not only expensive but I would have turned grey (permanently- skin that is) in the process. Proving 2 things -it's still an Art rather than a Science and we all respond differently to treatment.

That was supposedly something that would lessen the burns and mouth sores - totally BS.

http://www.quackwatch.org/01QuackeryRelatedTopics/suppsherbs.html

Here's a link to a Cure article on supplements:

http://www.curetoday.com/currentissue/departments/food/index.html

Here's another site you should probably look at:

http://vm.cfsan.fda.gov/~dms/ds-ill.html


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)
#58071 04-09-2006 01:42 AM
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Gary --

The Quackwatch material on aloe vera noted it has been found to be effective for "minor burns." Most of the QW material was a warning on aloe products containing other ingredients, esp. colloidal silver, which as Gary notes is a no-no. Aloe vera gel is the major ingredient (80-90%) in most of the creams and gels prescribed by physicians for radiation burns, it seems unlikely that use in the mouth as a swish or rinse would be detrimental -- I am not recommending one consume it. There are, however, aloe "products" at health-food stores with stuff in them like the colloidal silver which should be avoided.

Anyway, in my book worth trying based on experience.

Also, I don't really agree with the notion that "everyone responds to treatment differently" -- if this were true then this forum would not be very useful as no one's advice would hold for another person. But as you read the many posts it appears that those with basically similar treatments face a similar suite of problems and are often aided by similar approaches -- thius the usefulness of this and similar lists.

Our oncology nurses feel that they can get an idea of who will do well (that is, make it through treatment with fewest side effects, not who will respond best re cancer control) and who won't based as much on attitude and compliance with self-care recommendations as on initial stage. Patients who take this on as a challenge and who do everything they can to help themselves seem to do best. Their experience matches well several studies showing optimistic and "involved" HNC patients doing better than pessimists.

Even if aloe (or similar minor therapies) are medically ineffective, the act of doing something proactive which the patient *thinks* may help can itself have a beneficial effect. Even if it is a placebo effect, placebo effects are real.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#58072 04-09-2006 01:54 PM
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Gail,
You don't have to agree, and we can agree to disagree, but this information is based both on fact, from some persons here who had relatively minor responses to treatment (like Danny Boy for instance) and clinical data offered by the manufacturers of IMRT equipment "Some patients actually gained weight during treatment..." (source Siemens Medical Labs). Some here drove themselves to treatment every day and continued to work. Many with postive experiences don't like to share them as to not offend or make others feel bad. If Barry got through in the 95 percentile bracket of positive experience then I really don't understand your point about challenging my statement about "all respond differently to treatment".

I had no neck burns, for instance (a mild sunburn was it), my taste buds are perfectly normal and my swallowing is normal, I can eat anything, have normal salivary function, etc. Kept all my teeth, etc. I had an advanced stage cancer and no surgery. There have been many here who have been on PEG tubes for years, have issues with trimus, swallowing, taste buds, esophogeal dilations, etc. The postings here definitely lean toward the worst case scenario and it doesn't serve the general community at large, especially the newcomers or lurkers to scare the crap out of them before they even start treatment. Our entire group here represents only .06% of just the patients in a single years time in the US.

Placebo effects are fine as long as the patient doesn't substitute unproven "cures" for known ones. There are enough pariahs out there already shamelessly taking advantage of the fear of cancer patients, with bogus (and usually expensive) so-called immune system fortifiers, antioxidents, Noni Juice, etc., etc. that have no scientific basis except for testimonials and multilayer marketing schemes.

GNC is guilty of bilking people with illegal medical claims for supplements and had many regulatory actions/fines/FDA warning letters, etc., taken against them. They are not exactly a paragon of integrity. See:

http://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=GNC

We live in a devious world. It is my personal mission to debunk and prevent that whenever possible. It is the mission of OCF to try to provide as factual information as we can. Many here are desparate or want an easier way out (who DOESN'T want an easier way out - the treatment SUCKED!). I would hate to think that my advice caused someone to delay treatment because of some unproven treatment, herb or supplement. I also try to balance out the dark and grim posts with positive facts - that's why I started the "Survivor Check-in" Topic. Newcomers can see for themselves that many of us not only survive but even prosper and are transformed in a positive way from the cancer experience. I try my very best not to make this stuff up. My whole life has been wrapped in Quality Assurance, Regulatory Affairs and Science (which is synonymous for "search for the truth")for medical products in general.

I didn't realize that aloe was used with colloidial silver but why not?!?! Another interesting site about colloidial silver and it's side effects (I am still stunned that my otherwise fabulous, head of department, MO almost made me literally turn grey with a bogus "cure" for mouth sores and radiation burns). You really can't trust anybody and that's why we promote self advocacy, second opinions, CCC's and CC's, proper and complete diagnostic workups, etc.
http://homepages.together.net/~rjstan/

It sends chills up my spine that your JH doctor and oncology nurses might actually recommend an alternative or supplemental treatment based on your testimonial when you yourself state "...no one is sure".

The "Radiacare" product I used had aloe in it. I don't have anything against aloe but some of the claims made for it cross the line. You might as well scare up a bottle of Lydia Pinkhams Elixure (of course it had opium in it at least you would get some kind of benefit) even if it didn't actually cure anything. I wasn't challenging the efficacy of it for topical application for burns.


There is a great article in this months "Cure" magazine about patient feelings and what we actually "think". I couldn't have said it better...


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)
#58073 04-09-2006 03:09 PM
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I wish it were as simple (in my experience) as Gail states it to be, that people with similar treatments respond with similar problems, or that those with positive attitudes (according to her nurses) generally do better. I find that contrary to reason, and what we know scientifically. If all it took were a positive attitude to have a better outcomes or fewer side effects, there are many friends no longer with us that I would still have around, and some of us who have survived to have done so with far fewer complications in the process. Some I know had unbelievable attitudes, were fighters, some of strong faith or of strong character, all positive in their expectations, yet are no longer here with us, or others (if survivors) spent many months longer in complication related treatment. One thing that can be said about people with a positive outlook from a clinical perspective is that they are usually more compliant with treatment protocols, and self care issues such as oral care, trismus prevention techniques, nutrition, etc. But compliance with complication preventing protocols definately does not yield fewer complications, this idea completely negates the fact that we are indeed biologically unique, and what works for one person will not work for another. Our body's response to the trauma of radiation as only one example, can be highly unique, and the degree of mucositis varies greatly in people getting the same cgy's of radiation. That has nothing to do with compliance, attitude or any other subjective issue, it is a biological difference. Does a great attitude allow some people to tolerate the SAME degree of discomfort with out complaint...definately. That could be misinturpreted by a caregiver or nurse as "fewer complications."

As to everyone having the same response to a particular treatment, if that were true, Gleevec, Irrissa, or other drugs which were highly effective in small groups of individuals, but not in others, would show consistent outcomes - not wide varieties of responses. Even in radiation treatments, some patients like Gary have a minimum of long-term consequences and others have chronic long-term issues with the same treatments. This forum and its participants find "commonalities" in their experiences and that is what makes the discussions of value. Commonalities can be clear-cut evidence based, or subjective, and either way they do not apply to every patient. That would deny that we are all genetically similar yet at the same time completely different. I do not doubt that Gail's husband can credit positive attitude with many reduced problems, He definatley worked every possible angle to minimize and overcome complications and side effects, this to no small extent was aided by having a tenatious caregiver (Gail), who wroked hard to search for the right questions and answers, and was an active part of getting her partner though the process.

Cancer does not lend itself to gross generalizations, whether they be by a patient, or a nurse or doctor at a major cancer center. I think that people need to consider that what professionals say, sometimes reflects what their subjective impressions are, or their isolated clinical experience leads them to believe. That may or may not be in alignment with what multi-center long-term standardized studies show.


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.
#58074 04-09-2006 03:15 PM
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I stand corrected - 5% positive experience.


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)
#58075 04-10-2006 03:13 AM
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thank you for that post, Brian. FWIW, Gail, I had a very positive attitude all through (and before and after)treatment. I complied with everything I was told to do and even tried some extra things like gargling with aloe until it burned unbelievably. The Radiation Oncology and Medical oncology nurses and technicians thought, and told me, I got through the treatment amazingly well--but this really didn't have to do with my physical state (I ended up in the hospital at the end neutropenic and running a fever after all), it had to do with the fact that I was very persistent, completely complaint, kept taking amifostine even though it made me vomit almost every day, didn't cry, didn't talk about quitting treatment or show up late, etc.(in fact was pushy about getting them to treat me on time because it was important for the amifostine to work right).

And despite all that I have had a long slow recovery with major complications in terms of swallowing. And am sitting here almost a year after I started treatment hoping that more risky surgery will help me to swallow well enough just to get off the PEG tube (I have very little hope that I'll be able to eat well enough to travel or eat out easily if at all for the rest of my life). To read someone suggesting that somehow this negative outcome is related to my attitude not being positive enough is, quite honestly, somehwat infuriating. It's frustrating enough to me that I'm in this spot from the treatment I got to start with! I can just imagine how it would feel to someone who fought well and hard through treatment and then has suffered a recurrence.

Anyway, I've seen too much of the reverse. My Dad, when he had cancer 22 years ago, was sure it was going to kill him and had a horrible attitude both in terms of optimism and in terms of compliance (fortunately he ahd my mom riding herd on him), and yet he has managed to be quite a long term survivor. I've read about several patients here on this board who sounded like they had horrible attitudes and they bounced back much more quickly than I did with my sureness that I would lick this thing and recover quickly.

I agree that placebo effects are real and shouldn't be dismissed but I think it's quite a leap to assumoing that because Barry or anyone else recovered quickly it is primarily due to their positive attitude and expectations or that people who don;'t recover quickly are somehow deficient in this regard.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#58076 04-10-2006 03:57 AM
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I wanted to add that I strongly agree with Brian's thought that one thing my positive attitude did make a difference with was that I tolerated pain and discomfort without as much complaint as someone with a less optimistic attitude. This has been true for me in other medical situations I've been in too, before the cancer. In the last 5 years, there have been about 4 separate occassions when a doctor (different one each time) has said to me "I'm really surprised you aren't in more pain" and I've always thought that what the doctor really meant was "I'm really surpised you aren't complaining more about the pain you're in" because I WAS in pain at each of those times. But I have practiced mindfulness meditation on and off for about 7 years and I think that creates a different response to pain and discomfort sometimes (sometimes. I won't say that I've never been just crazy with pain because I have).

But I don't think that optimism, or any other psychological variable I had going for me, really meant I experienced less discomfort, I just reacted to it differently.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#58077 04-10-2006 06:06 AM
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This subject is an interesting paradox. They have actually been doing some science in this area, not only around having positive attitudes but around prayer and haven't really found a correlation between doing these things and a better outcome. For instance, at my church they almost treat me like a "hero" because I was one of the FEW that they prayed for that actually survived (someone candidly admitted that to me one day).

In some ways there is a DANGER to this mindset as some might feel their situation even more hopeless that they CAN"T have a positive attitude because of having a life threatening disease, having the sh*t kicked out of them in treatment - their relationships, sex lives and economics detroyed. NEVER again having their life back as they once knew it. Having a positive attitude is certainly something that the caregivers would like to see, but from the patients perspective it's a tougher nut to crack, especially in the last weeks of treatment when you are almost crawling into treatment every day and sleeping on the bathroom floor, curled up in a fetal position, so you don't puke in the bed or the hallway. Sometimes it's a better and more real approach, to say it's ok to be angry, depressed, sick and tired. Did my positive attitude, marching in there every day like a trooper help my survival - I doubt it - but it DID help the techs with the worst job in the world.

Acceptance is the toughest stage in the greiving process.

As we all respond differently to treatment - we all have different coping mechanisms. If we weren't different emotionally, then we might as well be clones or we could get all of our psychology from Dr. Phil.

This is another topic that will never have a resolution because of its great paradox.

(I love it when we start with aloe juice and end up with paradox) That's what makes this board so much fun - or at least blights some of the grimness.


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)
#58078 04-10-2006 07:19 AM
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I agree, Gary. I also find it fun when we "start with aloe juice and end up with paradox"!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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