Maitake????

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Dave
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Maitake????

Postby Dave » Sun Dec 17, 2006 12:02 pm

Howdy,
My name is Dave, I’ve been checking out the site for the last couple of months, and I just wanted to say good job Molly, and the best of luck to everyone here.
I’m not good at typing or writing, but I didn’t want to just start asking questions out of the blue. Please bear with my stumbling and bumbling through this.
After putting off going to the doctor for oh about a year, (what’s a little blood, hell I’m bullet proof) I never go to the doctor, especially when I feel fine, I figured I should go have this checked out. 10-5-06 the doc told me I have a 15 centimeter rectal mass about 10 centimeters from my anus.W.T.F.!!!! I eat right, I don’t smoke, and I’m not a stressed out dude.
So you all know the drill from here, primary doc to GI consult to colonoscopy to surgeon consult (port popped in here) to chemo-radiation consult to chemo-radiation therapy for the past six weeks. My first surgery is scheduled for late January. Nice to be rid of that fannie pack for the holidays. The docs ask me to stay plugged in 24-7 as part of a study protocol. Things sure have changed this fall. I guess this is my new job; I did like my old one so much better, (as I’m sure you all did too).
My question, my dentist recommended maitake mushroom extract as a great tumor-fighting agent. I thought it might have been explored here on these boards, but I’ve yet to find it and wanted your opinions (positive/negative) about it. I know there is no silver bullet out there, but what the heck; I’d eat rocks if I thought it would dislodge this tumor.
What I’ve found so far is at this site, I don’t know if it’s a good source or not.
http://www.healthline.com/galecontent/maitake
Lets all get well.

Thanks,
Dave

Lifes2short
Posts: 549
Joined: Mon Oct 30, 2006 10:54 pm
Location: Salt Lake City, UT

Postby Lifes2short » Sun Dec 17, 2006 3:09 pm

Interesting article, Dave. Thanks for putting it out there. It certainly looks like it wouldn't HURT you to take maitake mushrooms. But you should definitely talk to your doc first. Glad you are rid of the fanny pack in time for Christmas. I have not-fond memories of wearing that stupid fanny pack 24/7 for more than five weeks.

Now I'm on FOXFOX and I'm hooked up for 48 hours every two weeks - I still hate having that thing attached to me.

Best of luck with your surgery!

Magnolia
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Joined: Fri Jul 14, 2006 2:38 pm
Location: Virginia

Postby Magnolia » Sun Dec 17, 2006 8:05 pm

I see some impressive refrences to animal studies here that suggest that there may be some benefit, but you really can't tell if something will affect humans in the same way. The HIV study was in vitro, which means it was done in tissue cultures. That the very first step. Interesting, but not at all conclusive. The one human study was the one on hypertension. I'd like to see the actual paper. A lot of good reasearch is coming out of Japan lately on alternative therapies. Most docs are not going to recommend something unless it's proven safe, though, and it takes a LOT of evidence to prove something effective. No doctor is going to tell you to go ahead and take something he or she knows nothing about, and they learn little to nothing about these things in their training. When you ask your doc, have some articles at the ready.

Tim

Shetake Maitake Wetake!

Postby Tim » Mon Dec 18, 2006 10:31 am

Dave,

As long as you communicate with your Oncologist with what you are taking and he (she) is supportive, take the Maitake. I did. In fact I while I was going through Western Medicine chemo and radiation, I was also taking something called The Amazon Protocol, an herbal form of chemo and Chinese Herbs I got from my Chinese doctor in Santa Monica, who also treated my Qi energy problems and did accupuncture and some other woo woo.

As it, like in your situation, became a fulltime job I also saw a homeopathic doctor (MD) who in addition prescribed The Amazon Protocal gave me a vitamin cocktail via I.V. that basically contained B12, Magnesium, Glutathione and Folic Acid.

This may all seem overwhelming but I just did followed my gut instinct and that's really all anybody can do as long as those decisions are not made out of fear. I know several people who poo pooed the whole Western Medicine philosphy and went to Mexico for treatments of who-knows-what. While some clinics may be doing something right, most cases of people I heard about died anyway. I don't have a clue as to the statistics. Follow your gut.

My oncologist didn't know what was in those Chinese herbs and my Chinese doctor doesn't speak English so he wasn't too happy about that but like you I would eat rocks to stop this from coming back.

In fact there is a dirt from a Monastery in Santa Fe that... I better not go into that one.

As far as narcotics go after your surgery, the one I would recommend staying away from is Oxycontin. It is my opinion Oxycontin is better served for patients who are terminal and provides needed comfort to those with cirtical pain. I had an open wound for two years and went through major pain and consistantly increased my dose of oxycontin to the point that I was no longer acting normal. If you have surgery you're going to need to take some form of opioid and that's okay but just don't let the drugs take over. One day at a time.

All My Best,
Tim

Magnolia
Posts: 1514
Joined: Fri Jul 14, 2006 2:38 pm
Location: Virginia

Postby Magnolia » Mon Dec 18, 2006 4:38 pm

I took mangosteen. It's a Southeast Asian fruit. Same deal. Interesting in vitro studies, but no human studies. Nothing conclusive. I did it anyway. I did great on chemo as far as side effects went. I tolerated it very, very well. Whether it helped with efficacy remains to be seen.

I hardly needed any pain meds after surgery. The milder narcotics did the trick, and I didn't need them for long. Take what you need, though. You heal better when you aren't in pain. Every surgery is different. Some people have more pain than others. Don't expect it to be God-awful, but if you DO have significant pain, don't be shy about asking for pain meds. No point in stressing your body any more than it is already.

TIM

PAIN

Postby TIM » Tue Dec 19, 2006 1:55 am

Dave,

I should have qualified my need for pain meds. I had an open parneal wound for 2 years because I had a perforated colon after the first sugery. Later got cancer again and that's when we pulled out the heavy artillery. Radiation to an open wound will make it very difficult to close especially as much as they burned me. I won't go into anymore detail but it took an experiemental treatment using platelette gel to finally close the very large open wound that had to be scraped out every other day, thus the need to extensive pain meds.

Be well. Take care.

Tim

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Postby Ron50 » Tue Dec 19, 2006 6:28 am

Hi Dave,
If you believe in something and your Doc says it won't hurt,why not. But when it comes to ca I believe in the scorched earth policy. I used everything my docs reckoned would help. Trouble was by body did not like it too much and I finnished up having a veryold regime of 5FU which has been around forever enhanced with levamisole which is an anti-parasitic drug used mainly for intestinal worms in cattle. I don't know why they have stopped using it . I know 4 people that were on it (myself included) all were stage 3 or worse and we have a combined suvivorship of over 42 years. Unfortunately we all have long term problems that seem to be related to the chemo that we were on. So what do you do ,go natural and go earlier but healthier or go traditional and sometimes wonder why you bothered surviving. Interesting call. I'm sure looking forward to a time when the treatment for ca doesn't consist of cut ,burn or poison.
Ron

Dave
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Joined: Sat Dec 16, 2006 5:12 pm
Location: florida
Contact:

Postby Dave » Tue Dec 19, 2006 5:18 pm

Ron50 wrote: I'm sure looking forward to a time when the treatment for ca doesn't consist of cut ,burn or poison.
Ron

Beam me up Scotty, and have Bones standing by.

Lifes2short
Posts: 549
Joined: Mon Oct 30, 2006 10:54 pm
Location: Salt Lake City, UT

Postby Lifes2short » Wed Dec 20, 2006 2:44 pm

Ron, how right you are. If only there were some other way to get "cured" without it taking such a physical toll.

I think about the two wonder drugs that are currently helping to knock back my cancer - Oxaliplatin and Avastin. Both are pretty scary. The neuropathy in my face and hands gets worse every time. I often wonder if it will haunt me for the rest of my life - long or short as it may be.

Then there's the Avastin - great results in terms of better response to chemo drugs and median time to cancer progression. But we know nothing of the long term effects because most of the people in the clinical studies are dead now. My rectal incision never healed. Though I didn't suffer anything close to what Tim went through, I did have several weeks of wound packing followed by opening the incision and letting it heal from the inside out. After six months it had closed almost completely and the pain was at a tolerable level. After only one round of Avastin, the wound reopened. After two rounds the wound is wide open, draining and quite painful.

It's difficult to know what is the right thing to do. It's unfortunate that the cure comes at such a cost.

holycow101
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Joined: Mon Dec 11, 2006 11:44 pm
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Platelette Gel

Postby holycow101 » Wed Dec 20, 2006 11:41 pm

Lifes2short,

Since we're in the same town I know the person to get your wound closed using the Platelette Gel procedure. In twelve treatments my wound was completely closed after closing and opening for two years. A man by the name of Les Bricker (lbricker@msn.com) started the company who originally used this treatment for closing cracked chests for heart surgeries. I was an extreme case for them to experiment on. They would bring a machine into my house, draw a 100 or so cc's of blood and a laser would separate the blood platelettes, plasma and red blood cells. I may be repeating information but they mix my own platelettes with Thrombin (a bovine product I would get a prescription for) and mix the two as they injected it into the distressed wound area. The platelettes would rush to the freshly scraped tissue to stop the bleeding, then stop the bleeding and upon doing so they would release a growth hormone that mixed with the Thrombin and would actually create new tissue. It's amazing and is all medically backed with solid research.

E-mail Les Bricker and tell him I told you so. Scott Watson and Linda Cox did my treatments. Les is a great man as are Scott and Linda. It sure was easier to get moving on with my life without that stupid wound vac sucking my butt wound and costing a fortune.

Warm regards,

Tim Nelson

Dave
Posts: 23
Joined: Sat Dec 16, 2006 5:12 pm
Location: florida
Contact:

Postby Dave » Thu Dec 21, 2006 2:14 pm

I guess my parents are jumping on this cancer thing with both feet too. My dad had me come over to his house and pick up a case of Limu Juice, he herd some testimonials that this stuff will fix anything from hang nails to brain tumors…Hey, he’s my dad what can I say, I guess he just wants to keep me around for a while.
Anyway, anybody know anything about this stuff, good, bad, etc.?

Thanks again, and Merry Christmas

Lifes2short
Posts: 549
Joined: Mon Oct 30, 2006 10:54 pm
Location: Salt Lake City, UT

Postby Lifes2short » Thu Dec 21, 2006 2:35 pm

Thanks for the info, Tim. I'm not in horrible distress right now. Mostly, I'm just horrified to see this thing opening up again after it was so close to being completely healed.

It also makes me worry about the Avastin and whether I'm going to get fistulas elsewhere. When I think about the severity of the radiation that went to my bladder and colon and all the surrounding parts, I worry about having something open up and cause serious problems. I'll be talking with my Oncologist next week to see if I should stay the course with Avastin or kick it out of my treatment plan. I did the first three rounds of Folfox without it and still had good response.

I am going to write down the info you gave me and get in touch with them after the holidays.

Thanks so much!


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