Those of you in Japan - PSK Mushrooms

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Siti
Posts: 52
Joined: Thu Aug 01, 2019 10:58 am

Those of you in Japan - PSK Mushrooms

Postby Siti » Mon Aug 19, 2019 3:35 am

Hey everyone,

I have been reading that PSK Mushrooms have been proven effective and have been used in Japan and China along with adjuvant chemo since the 70s.

https://www.mskcc.org/cancer-care/integ ... versicolor
https://www.cancer.gov/about-cancer/tre ... hrooms-pdq

1. Has anyone use this before?

2. I have a relative who will be in Kyoto next week, I was wondering if anyone knows where I can buy genuine ones?

Thanks for your feedback!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Those of you in Japan - PSK Mushrooms

Postby MetastaticEquilibria » Mon Aug 19, 2019 6:16 am

Siti wrote:Hey everyone,

I have been reading that PSK Mushrooms have been proven effective and have been used in Japan and China along with adjuvant chemo since the 70s.

https://www.mskcc.org/cancer-care/integ ... versicolor
https://www.cancer.gov/about-cancer/tre ... hrooms-pdq

1. Has anyone use this before?

2. I have a relative who will be in Kyoto next week, I was wondering if anyone knows where I can buy genuine ones?

Thanks for your feedback!


Haven’t tried PSK (called kawaratake (瓦茸) in Japan), though have tried reishi (霊芝) and shiitake (椎茸), which seem to have similar immune-system boost effects claimed. (I can’t claim for sure they helped me, though.)

In any case, the easiest place to get those mushroom extracts is probably a Chinese medicine (kampo (漢方) or kampoyaku (漢方薬)) store. I don’t know where to go in Kyoto, but google shows a bunch of them there. Maybe your relative can ask at a tourist information booth for suggestions?

One thing to be aware of is that some kampo pharmacies only fill prescriptions, so your relative may need to check a couple to find one that sells over the counter.

The other thing to be aware of is that mushroom extracts are not cheap. I suppose it takes a lot of mushrooms to make these extracts.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Ehut
Posts: 209
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Those of you in Japan - PSK Mushrooms

Postby Ehut » Mon Aug 19, 2019 6:23 pm

I used PSK for 2 years after my chemo ended. I bought them here: https://mushroomscience.com/coriolus-super-strength/
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Those of you in Japan - PSK Mushrooms

Postby Tupelo honey » Mon Aug 19, 2019 7:19 pm

Ehut wrote:I used PSK for 2 years after my chemo ended. I bought them here: https://mushroomscience.com/coriolus-super-strength/


I also used Mushroom Science to purchase PSK and used it as a adjuvant treatment.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED

Siti
Posts: 52
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Wed Aug 21, 2019 3:44 pm

Thanks so much, ehut and tupelo! I have looked into it and will try to order some next week when it's back in stock :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

jsbsf
Posts: 17
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Wed Sep 04, 2019 9:34 pm

Ehut ,

Did you take the PSK and Modified Citrus Pectin throughout chemo? We had chemo orientation today and were told to reduce antioxidant intake while on chemo. The explanation was that antioxidants strengthen the cell walls, and that’s the opposite purpose of chemo. So antioxidants would benefit the cancer cells.

I didn’t understand if you started taking these supplements until after chemo and for 2 years or if you took it while on chemo and continued for 2 years after chemo.

I bought turkey tail on Amazon from a company called Noomadic. It says on the container that it is hot water extract with 30% beta d glucans. I also bought something called PectaSol-C from a company called ecoNugenics. Does anyone know if these are the ones that may be helpful against colorectal cancer?
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 2.7cm liver spot looks like stage IV
9/16/19 MSS;MRI, baseline CEA is 4, not considered useful
9/23/19 Port, tag smaller liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

Siti
Posts: 52
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Thu Sep 05, 2019 1:50 am

Where / which hospital are you being treated, jsbsf?

Our doctor didn’t tell us anything about anti oxidants however have told us to refrain from fatty fish and omega 3 supplements.

I just ordered some PSK from mushroom science as recommended by our fellow members here and would be interested to know as well if the others took during chemo.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

jsbsf
Posts: 17
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Thu Sep 05, 2019 10:36 pm

Hi Siti,

I’m the spouse/caregiver. We are at Kaiser in San Francisco. Yesterday was “chemotherapy orientation”. We just got him his colonoscopy 8/23 (5+cm tumor, lower rectum), and had a CT scan 8/26 which showed a spot on the liver. We had a Pet scan on 9/3, and the results are in. We are getting the news tomorrow. We are both pleased with how fast they’re working.

Mom died of colon cancer in 2012, and I’m scared. I’m hopeful, and my main job now is to get as much information as possible.

I’m trying to look at this as having a meaningful purpose in life. Hoping I can help make a difference.

In the chemo class, I asked about antioxidants specifically, and didn’t mention Turkey Tail. The lady said to not go crazy eating blueberries. But the research I’ve been doing seems to guide me in the direction that it is very good to take alongside chemo and radiation. I think it’s a great idea, PSK and PSP. But time will tell.

We also got some PectaSol-C (ecoNugenics), and he’s taken it for a couple days. I have no idea if it’s the right kind of Modified Citrus Pectin that helps with Colorectal cancer.

I have ordered 3 brands do Turkey Tail, and wrote to two companies to find out if they contain PSK. The one from Host Defense replied today:

“Thank you for reaching out with your question regarding Host Defense Turkey Tail Supplements.

PSK and PSP are naturally-occurring, protein-bound polysaccarides found in Turkey Tail (Trametes versicolor) and are both present in the supplement you purchased. PSK and PSP are one subset of polysaccharides that have shown efficacy in research. Here at FP, we believe all of the nutrients and myriad compounds within the whole mushroom are beneficial to the immune system, and necessary for a whole foods approach to health.

A chief goal with our encapsulated products is to keep the mushroom's natural chemical architectures intact. Therefore, we don't isolate any specific compounds and then add them back into our powder products.

Here is a great article by Paul Stamets, our founder, that outlines our approach -
http://www.fungi.com/blog/items/beta-gl ... unity.html

If you would like more information on mushrooms and health, here are some great references:
Books we offer on mushrooms and health: http://www.fungi.com/shop/mushroom-book ... tml#/BHMYM
http://pubmed.gov/ Search by the Latin name of the mushroom species for best results. For example, in the case of Turkey Tail, you’d search Trametes versicolor
http://mushroomreferences.com/ Select references in support of mycelium and ethanol extractions
You are welcome to check out our Host Defense website, which has more in-depth information on the products, supporting research, and our company. You can also use our store locator on our Host Defense website to find a location near you. We hope this information helps, and we welcome any further questions you may have. Have a lovely day!”

I hope this helps you and others who may be looking for solutions in addition to medical treatment.
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 2.7cm liver spot looks like stage IV
9/16/19 MSS;MRI, baseline CEA is 4, not considered useful
9/23/19 Port, tag smaller liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

Siti
Posts: 52
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Fri Sep 06, 2019 2:30 am

I hope the PET scan for your husband will be clear. Lots of people in this forum live a long life with mets just in the liver which can be resected and have a curative outcome.

My husband is taking Tumeric and Vitamin D3 along with chemo and nothing else. Though he’s taking a cup of blueberries every day as well 2-3 glasses of green tea.

Now I’m beginning to be to worried because most fruits and healthy foods are packed with antioxidants.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

Rock_Robster
Posts: 352
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Those of you in Japan - PSK Mushrooms

Postby Rock_Robster » Fri Sep 06, 2019 3:15 am

Siti wrote:Now I’m beginning to be to worried because most fruits and healthy foods are packed with antioxidants.

For what it’s worth, my oncologist is very against using antioxidants during chemotherapy, but he says the sorts of dosages that you can get through dietary intake are fine, and encourages a diverse and healthy plant-based diet. He completely bans antioxidant supplements however as these are at much higher concentrations.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

jsbsf
Posts: 17
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Fri Sep 06, 2019 8:44 am

Thank you siti, I hope so too.

Yes I hear that Turkey tail can be a good adjuvant therapy. I’m still not clear about when ehut took the supplement in relation to actually being in chemo, and in what amounts. A lot of people don’t follow the recommended dosage.

I read reviews about one of the bottles I bought at Amazon, and people claim to take as many as 12 capsules per day. I also need to keep in mind that people can say/claim anything in their reviews, so I’m always skeptical.

My understanding of The TED talk with Paul Stamets is that his mother took 4 pills twice daily, but didn’t take any other treatment (chemo/radiation).

So I wonder if you can take maybe 2 pills a day with chemo and then increase to 8 afterwards. I’m just not sure especially since we are all different and in different stages.
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 2.7cm liver spot looks like stage IV
9/16/19 MSS;MRI, baseline CEA is 4, not considered useful
9/23/19 Port, tag smaller liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

jsbsf
Posts: 17
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Fri Sep 06, 2019 11:56 am

Hi Siti,

I just found my answer to the question I had for ehut. It’s in a thread he responded to in March 2013 called one year post surgery. He did not find out about PSK until after chemo, so therefore he began taking it following chemo. If you find that thread it has a lot of other information, too. Unfortunately I haven’t discovered how to pull quotes from another thread, yet.

Oh I see the little quote button now, but I didn’t copy it :o .

So now I’m back to wondering if it’s better to take PSK only while not on chemo. But I still feel like it may help, maybe lower dosage?
Last edited by jsbsf on Fri Sep 06, 2019 10:14 pm, edited 1 time in total.
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 2.7cm liver spot looks like stage IV
9/16/19 MSS;MRI, baseline CEA is 4, not considered useful
9/23/19 Port, tag smaller liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

Siti
Posts: 52
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Fri Sep 06, 2019 11:58 am

3g of PSK (Krestin) were administered to patients in Japan. I wrote to the company (Kureha) who invented it, they do not produce PSK anymore as they were making a loss when it became too expensive.

Email from them:

“Krestin had been manufactured by Kureha's original method for about 40 years. The main reason for discontinuation was that purchasing some parts of the manufacturing facility became difficult, and therefore, it was very difficult to maintain quality standards.”

So clearly demand dropped. I don’t know the reason.

Ehut took it after chemo, as written above. And another fellow forum member took it at the tail end of chemo as he didn’t know about it till later on. He continued to take it for 2 years and wasn’t sure if it helped but that being said he’s now long term NED.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

jsbsf
Posts: 17
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Fri Sep 06, 2019 2:53 pm

Yes, my previous post is still pending approval, but I did realize ehut began taking his PSK following chemo and for two years thereafter.

The results were relatively good in my case, as can be expected.

There is a 1cm lesion on the liver along with the 5+ cm tumor on the rectum. It’s being treated like stage IV. However what makes it interesting is that there is no sign of anything else on the PET scan. It was described as appearing like two self contained lesions. But it is not certain that the two are related. I guess usually with stage IV there is more evidence of spread, and it wasn’t like a typical metastasis.

So they are going to mark the liver lesion, install a port and begin chemo. I believe the treatment is supposed to last for 9 months with the liver lesion being removed first and later, the colon tumor. All this followed by more chemo.

I was prepared for much worse news, so for some this may not sound like the greatest, it’s a big relief for me.

I’m more leaning towards taking PSK when not on chemo since that’s what ehut did, and I don’t want feel like if things don’t work out that my intervention may have played a role. Then to take it during the times when off chemo. He’s going to take them now though since chemo doesn’t start for a couple weeks.

The oncologist only recommended the stool softener, Sinakot has been working well. We have a prescription pain med, but OTC ibuprofen works well. Also vitamin d3 was highly recommended. We have 5000 iu and he’s been getting 2 of these per day.
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 2.7cm liver spot looks like stage IV
9/16/19 MSS;MRI, baseline CEA is 4, not considered useful
9/23/19 Port, tag smaller liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Those of you in Japan - PSK Mushrooms

Postby Tupelo honey » Fri Sep 06, 2019 3:25 pm

I took 5 capsules of 500 mg each of Mushroom Science's "Turkey Tail Coriolus Super Strength 500mg" from Dec 2015 to Sept 2016 - actually during my active chemotherapy. I did end all supplements about the time I ended chemotherapy. At the time I leaned heavily upon the Life Extension website for Colo-rectal cancer treatment, recommended supplements, prevention of surgical metastasis, etc.
https://www.lifeextension.com/protocols ... al/page-10
https://www.lifeextension.com/protocols ... al/page-08
https://www.lifeextension.com/Magazine/2009/12/Preventing-Surgery-Induced-Cancer-Metastasis/Page-01

You can actually order the Mushroom Science PSK I used from Amazon: Turkey Tail Coriolus Super Strength 500mg https://www.amazon.com/gp/product/B0015CG6M8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Here’s a cut and paste of my supplements, posted earlier... I was able to get through the full 12 rounds of my Capeox chemotherapy regime with no reductions in dosage and no residual neuropathy. This original post was more about neuorpathy protection but I do believe that's less of a concern these days with the new reduced chemo regimes. The anti-cancer and anti-metastatic ones are grouped together at the end, including PSK:

"For neuropathy protection, I used Acetyl L Carnitine and glutamine from a day or two before infusion to a few days after - prob 5-6 days each cycle. I usually took 15 grams of glutamine powder mixed in water twice a day and 2 - 500 mg pills of ALC twice a day. Plus 100 mg of B6 to protect against Hand Foot Syndrome, which I never got.

I was a bit more concerned about the calcium magnesium combo, as it's been a little controversial. It used to be a standard part of treatment based on a study showing it reduced neuropathy but it's been pretty much discounted as being effective against neuropathy and one study then seemed to show it reduced chemo effectiveness. Then that study was discounted. Perhaps it really was a zero sum game as the general consensus (and my oncologist) has it nowadays but I'd been taking magnesium and calcium anyway so I upped it to the old doses of 1 gram (1000 mg) of each immediately prior to infusion on the day of chemo only.

I do recall that I heard / read any antioxidants were counterproductive to chemo, as they may "protect" the bad cells from intentional damage by the chemotheraputic agents, whose job it is to damage the "bad" (cancer) cells. I did avoid vitamin C in supplementation form. Although I know now it has antioxidant effects, I did take the PSK concurrent with chemo as that's how the Japanese and most studies used it. It seems the key modality for its use in cancer treatment is its immuno-theraputic properties https://www.ncbi.nlm.nih.gov/pubmed/12168863

I don't know whether any of this truly makes a difference, or just helps give us a sense of control during a frightening time. I'll also say I 100% believe there is no 100% one-size-fits-all solution and everyone's causes, treatments and results are going to vary based their individual biology and genetics.

But so far, my outcome has been good and I'll take it. I'm not far enough out from treatment to comment about the overall effectiveness of the other supplements I took for their "anti-cancer" (Curcumin, PSK, Celixicob) and "anti-metastatic" (cimetidine, modified citrus pectin) properties but for the above mentioned four I took specifically to address potential neuropathy, whether I was just lucky or not, I can state it 100% worked and I am one of the lucky ones with no lingering symptoms.....
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED


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