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#53635 02-22-2005 12:11 PM
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ZendaT Offline OP
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The maitake mushroom has been touted as an immune-enhancing and anti-cancer agent. Does anyone have personal experience or information to share?

Be well. Zenda


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
#53636 02-22-2005 02:17 PM
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Hello Zenda,

I have no knowledge of the mushroom you call maitake. You might want to go to quackwatch and search for information. It may or not be on there but we have learned there are so many
false claims about cancer cures. Most are just out to prey on cancer victims and make money at it. If I may quote Gary, "There is a special place in hell for them"

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#53637 02-22-2005 02:56 PM
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Danny Boy, Zenda, here it is:

second to last paragraph before "bottom line"

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

Sorry - like anything else in life "if it sounds too good to be true - it probably is".

Nice ride Danny - you deserve it!


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)
#53638 02-22-2005 05:11 PM
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Zenda, search back on previous posts, I think we talked about the mushroom thing before. Right after I finished treatment, one of the managers of the factory I work with came up with several box's of mushroom capsules, a mix of several types supposedly designed to help the immune system fight cancer cells. Now the particular person who gave this to me is a doctor here in China, where they use herbal remedies a lot.

My wife also insists I take the "mushroom pills," and since I'm not on any other medication, and the main thing it does is promote domestic tranquility, I go ahead and do it. If I don't there's hell to pay around the Hobo household. Variety of mushroom isn't Maitake though, it's another type that starts with a "G". I want to say gandolfini, but that's the guy on "Soprano's" Anway, I'm not exactly convinced it helps, but in my case it's not hurting.

If you're insistant on doing the herbal route, go to a GOOD chinese herbal doctor. I've done the herbal teas for other issues, and some actually work, some don't. Also, for some issues herbal remedies are not recommended, and the herbalist should be able to steer you clear also.

Just my observation from personal experience. Not making any claims or recomendations to stray from generally accepted western medicine guidelines.

Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#53639 02-22-2005 06:00 PM
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Since this is a section on the forum where we are allowed some liberties I'll take the contrary opinion. (sorry Gary)

Many mushrooms have been researched with respect to health benefits. We are asked not to link web sites here except to reference areas (not to organizations selling products) If you do a Google search on "mushroom cancer" you will come up with many interesting and serious discussions around some mushrooms and their suspected benefits. This is just one:

http://sci.cancerresearchuk.org/labs/med_mush/med_mush.html

Gary you might read the chapter 10 conclusions.

I will say this (and expect to get flack for it) that research on a naturally grown cure will likely be limited. The reason is simple; you cannot profit from something easily grown.

This is an area where I do NOT think Quack Watch has explored. Quack Watch regularly lists anything that attempts to make a profit from suceptable (seriously ill) people. I have no serious gripe with them except that they paint with a very wide brush.

The bottom line is if an edible substance is thought to help with cancer I see NO reason not to try it. (Except if it is expensive and overly hyped) I ate more than a few pounds of Shiitake mushrooms and splurged on pills (I will not name publicly) that were mushroom based. I do NOT claim that it cured my cancer, but no one can say it didn't help.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#53640 02-23-2005 07:55 AM
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Mark,
I'm not taking the bait. There were some interesting articles (positive) about them on the MSKCCC and ACS site so who knows - maybe they'll end up in the chemo-preventive category? There is real scientific research going on about it (the the US as well). Many pharmaceuticals come from plants and different organic things but for it to become a "drug" the science has to be there, as well as safety and efficacy studies- not just testimonials.

Quackwatch was assailing claims made by health food store workers which are notorious for disseminating bad and false information. They didn't have anything on the mushrooms themselves.

As an adjunct to regular and proven therapy it is a personal decision to make. To replace or substitute proven therapy is a danger that cannot be overemphasized.


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)
#53641 02-26-2005 04:53 PM
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ZendaT Offline OP
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Thanks for the input. My Medical Oncologist suggested I see a Naturopathic Oncologist and is willing to consider the N.O.'s recommendations.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
#53642 03-21-2005 04:41 PM
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Sorry for the late post. I am not sure of the medicinal aspects of Maitake but the Matsutake is the rarest mushroom and the highest on the chart in terms of antioxidants, etc. I do know the Japanese 5 mushroom soup tastes great. Maitakes are grown in the wild in PA, too.

I am of the belief that even though certain foods are better for us than others, compacting them as an extract and taking capsules full of them may not necessarily be better. The body is designed to ingest food and extract the nutrients.

The Japanese believe one of the secrets of long life is to eat long root type vegetables. There are documented cases of certain people living off of gobo root (burdock,radishes as long as 40 feet, the sweet potatoe (yam) diet, etc. I tend to think the taste part is what makes it great and wonder if the people living longer just aren't exposed to as much in the cities, given they are typically on an island or in the mountains.

Just my two cents worth. Pass the mushrooms please.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#53643 03-23-2005 07:17 PM
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Hi. As Zenda's husband and caregiver, and new to the forum, I'll jump in here briefly and update the discussion to add that we have gone forward with using the Maitake mushroom, in a capsulated form. Who can know for sure? We can't obviously, but are using the mushrooms with the blessings of her chemo oncologist. Not as an alternative to his prescribed therapy, but as an adjunct, with the thought that, if these MAY help to boost the immune system, and MAY be helpful to the white blood cell count, why not include them as a part of her treatment. I might add that we are back-to-nature type people who have used a variety of natural, herbal remedies over the years, so it is not unusual that we looked for possible natural additions to her diet. One of the drugs used with her chemo treatment is itself an extract of the Yew tree. I can say that, after her third chemo treatment, her white blood cell count continues to be good. Certainly there are many "quack" products and ideas being marketed as aids to or cures for cancer. The naturopath with whom we consulted was quick to promote high doses (50 grams daily) of Vitamin C, ozone infusions, and coffee enemas, all of which we found suspect. (As did her oncologist.) But Japanese herbalists have used the Maitake mushrooms for hundreds of years. Who can say? We decided we were willing to give it a try. It may take science a long while yet to determine whether there are any significant benefits to the many, many natural remedies that have been used for generations. We don't have the luxury of waiting for an official study. I'm not recommending the Maitake mushroom, just adding to this discussion to say that given all we've read on the subject, we chose to use them. And we're comfortable with that decision.
Be well.
Grant

#53644 03-24-2005 01:40 AM
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Grant, welcome to the site and thank you very much for your insight on this subject. A couple of observations: most, if not all, of our current meds comes from (or originally came from) some natural source, as I understand it. So it is not unexpected to me that there are some natural things that will help various ailments. Also, as I recall, sharks have never been found with any cancer in them so there may yet be a substance out there somewhere that will insulate humans from this disease. I say, let's keep looking.

The other thing is to note that as you mentioned, Zenda is at the beginning of her treatment. By the end, I had problems with my white blood cell count so I was put on Procrit. It is a drug given once a week for 8 weeks or so to improve blood counts and worked quite well for me. If Zenda has difficulties later on, please keep Procrit in mind as it adds to the energy level of rad patients. It really helped me and I was on it for two different occasions for 6 weeks and then 4 weeks.

Lastly, the job you have is sometimes a lot harder than being a patient. You are a member of the sainthood of caregivers. Remember that to be a good caregiver, part of your job is to be good to yourself so you can give that extra bit when necessary, so take time for yourself when you can. The battle before you can be difficult, but you all can win it and beat this disease. God bless.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#53645 03-24-2005 07:19 PM
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Hello Grant, good follow-up note.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#53646 03-25-2005 05:36 PM
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Sharks and cancer..........here we go!! Anyone who takes a good look at shark cartilage and the bunk of misinformation and falsehoods surrounding the money making effort to get people to consume it, knows that this is another bit of pseudo-science built on the desire to make money. While is true that many positive things have come from natural occurring substances, do not forget that cancer is essentially a genetic disease. The basis for a cure will come from a technology that reverses the genetic aberration that manifests itself as cancer. This is quite different than plant based biotics that cure bacterial infections.


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.
#53647 06-24-2005 03:48 PM
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I've been reading more and more about the famous viral link to some cancers too.

http://my.webmd.com/content/article/78/95750.htm
http://www.oralcancerfoundation.org/news/story.asp?newsId=51

I know this isn't a new concept, (a lot can be found on this very site) I think the link that some viruses change the genetic makeup somehow will be the ultimate linkage.

A fascinating book is: "How to win the Nobel Prize" by Prof. J. Michael Bishop

http://www.npr.org/templates/story/story.php?storyId=1334346

Incidentally, the author of the two books "Shark's Don't Get Cancer" has been proven wrong several times. Sharks DO in-fact get cancer, and cancer in their cartilage too.
http://my.webmd.com/content/article...p;condition=Home%20&%20Top%20Stories

http://www.straightdope.com/columns/041022.html

But, I know shark cartilage has 'some' therapeutic affects on the growth of new blood vessels. I guess it's been clinically proven to retard this growth. My dad has taken it religiously as a treatment (which for him has worked) of an outbreak he gets occasionally (skin lesion). Anyway, following his heart attack the cardiologist insisted he stop taking the shark cartilage since it retards new blood vessel growth.

http://www.cancer.gov/newscenter/sharkcartilage

Just some anecdotal information I wanted to share.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
ZendaT #158500 12-04-2012 08:07 PM
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If anyone even bothers going back to posts from 2005 I would sure like to join in as I have spent time understanding mushrooms because I am half Japanese. Mushrooms are a nutrition item and not to be confused with medicine. Benefits are increased immunity to colds maybe but there are multiple types. The main ones are shiitake, maitake and reishii. Reishii are really the supershroom that gives the best benefit health and nutrition wise by taking dry mushrooms, dried red ginger from a Chinese herbalilst and putting in a crock pot and drinking the juice like tea. Benefits are plenty but curing cancer isn't one. It is more boosting immunity from things like colds but not even sure other than the first two really taste good!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Uptown #158519 12-05-2012 07:37 AM
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Ed

At first, I thought; Oh No, now I have to be the "bad guy" again, and start digging out the phase one studies and the critiques of all those Japanese "studies" and spell out the difference between eating mushrooms and getting injections of beta glucan (the active ingredient in Maitake).
But instead you were very reasonable:
[quote] Benefits are plenty but curing cancer isn't one.[/quote]
Thank you.
By the way, one reason people don't usually resurrect 7 year old threads is that a lot of the information is badly outdated.
Like the "interesting" theory of a virus causing this cancer, when now we know for a fact that HPV does cause oral cancer.
Another example in this old thread, is the concept of having the "maximum " radiation done (presumably 77 GY) - which may have been true 7 years ago, but as Kelly211 and myself and PaulB show, not true anymore.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
ZendaT #158524 12-05-2012 09:11 AM
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Its best not to comment on old threads. It can create confusion as too often members do not pay attention to dates and wont realize things are out dated. It will also push down newer posts. Many times on old threads, there will be posts by beloved members who are now deceased which can be hard to read.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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