Those of you in Japan - PSK Mushrooms

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Claudine
Posts: 175
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Those of you in Japan - PSK Mushrooms

Postby Claudine » Tue Sep 10, 2019 9:53 am

Well, I made us golden milk last night and it's delicious, so at least there's that! Especially when the temps are starting to go down here in MT, it's a good, heart-warming drink. I used half a tea spoon of ground turmeric so we each got about 1/4, I'm sure that's probably too low to have strong effect but maybe it's safer in terms of anti-coagulation. We're meeting with the onc next week, I'm curious to see what he says. I'll also bring up vitamin D3.
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 6.2
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

AlexandraZ
Posts: 89
Joined: Fri Aug 23, 2019 8:25 am

Re: Those of you in Japan - PSK Mushrooms

Postby AlexandraZ » Tue Sep 10, 2019 10:29 am

We love golden milk too. My boyfriend woke me up at 5am last time he was getting chemo (he was sleeping with the 5-FU pump on) and asked me to make him golden milk! For some reason he woke up craving it. Normally I give Jesper 1000mg of turmeric every day. I haven't worried too much about the bleeding/blood thinning risk but maybe that's something to consider as well. A friend of ours who had cancer passed away due to a blood clot, and so I've always been more afraid of blood clots than the risk of bleeding. But I suppose it's a matter of balance, as with so many other things.

I think the supplementation factor depends soooo much on your oncologist as well - in Denmark integrative oncology does not exist, and the oncologists we have met know next to nothing about nutrition/supplements. But in the US it seems to be a totally different story. I was surprised to find that Memorial Sloan Kettering's website has a whole section about integrative medicine and herbs. I wish we had that kind of thing here! I got a booklet at the hospital that told me that at worst, supplements are dangerous, and at best, a waste of money. :shock: And the nurses told us that if he wants a giant bar of chocolate during chemo, he should eat it. I understand the aspect of not losing weight, etc, but I don't understand why they actively encourage an unhealthy diet. Surely it is best to nourish the body and keep it strong during aggressive chemo treatments? Ok sorry, rant over.

I agree with you Siti, our men are lucky they have us to do the research and care for them! :) I always tell Jesper his job is to endure the chemo, and I'll take care of the rest and do what I can to make it less rough on him.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Ehut
Posts: 214
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Those of you in Japan - PSK Mushrooms

Postby Ehut » Tue Sep 10, 2019 2:52 pm

jsbsf wrote: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?


Sorry I didn't see this question until now. I took no supplements during chemo for exactly the reason you cited, that antioxidants could interfere with the chemo action. I started all supplements after chemo ended. And I would also add that even if the supplements didn't help me at all, there was a certain relief to my anxiety after the end of conventional treatment.
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!

cckc57
Posts: 4
Joined: Thu Jul 12, 2018 2:26 pm

Re: Those of you in Japan - PSK Mushrooms

Postby cckc57 » Wed Sep 11, 2019 11:44 am

Another thing to add about turmeric and the challenges of absorption are that some forms use a black pepper extract or BioPerine which improves absorption. However, there are also supplement forms that are hydro-soluble that absorb even better.

Claudine
Posts: 175
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Those of you in Japan - PSK Mushrooms

Postby Claudine » Wed Sep 11, 2019 12:55 pm

I found this article very interesting. Of course, it's in mice at this point, not humans yet. But if I understand correctly, curcumin + Bevacizumab (Avastin) has the potential to be as efficient as Folfox + Bevacizumab. This could be very important for people who cannot do 5-FU like amarie123!

https://www.ncbi.nlm.nih.gov/pubmed/27241019
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 6.2
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Siti
Posts: 82
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Thu Sep 12, 2019 9:14 am

Hey all,

We met with our dietitian and as expected, she kept everything quite vague. She seems to be fine with antioxidants because a nutritious meal is always packed with antioxidants. She’s also fine with blueberries and green tea, as long as we don’t overdo it. So a cup of berries or a few glasses of green tea is fine.

She wasn’t too pleased with Vitamin D3 and insisted it should be be within the daily recommended dose (I think that’s 400UI) and not anything more. Personally, I am taking 2000UI.

Needless to say Tumeric is out of the question — in her opinion, as long as there’s no solid clinical trials, they’d rather their patients not take anything.

A useful tip with regards to juices, she says they’re good if my husband doesn’t have appetite to eat, but always have it with some carbs, for example a cracker/bread, so that it doesn’t get evacuated too quickly and helps absorption.
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 for KRAS, NRAS and BRAF
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
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Siti
Posts: 82
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Thu Sep 12, 2019 9:23 am

AlexandraZ wrote:the nurses told us that if he wants a giant bar of chocolate during chemo, he should eat it. I understand the aspect of not losing weight, etc, but I don't understand why they actively encourage an unhealthy diet. Surely it is best to nourish the body and keep it strong during aggressive chemo treatments? Ok sorry, rant over.

I agree with you Siti, our men are lucky they have us to do the research and care for them! :) I always tell Jesper his job is to endure the chemo, and I'll take care of the rest and do what I can to make it less rough on him.


I can totally empathise. Our nurse told us he should be eating fries with mayonnaise to keep his weight up! And I was so shocked to discover the unhealthy food options at the cancer hospital, lots of processed foods like ham, deep fried bitterballens etc.

My husband and I have the same agreement — I do everything from research to appointments, food and preparing our home to make it comfortable for him to endure treatment.

Last night he was admitted to hospital due to high fever and severe abdomen cramps — it hasn’t gone away since Saturday where we dined out for the first time. His blood seem to be fine, now they’re doing more tests to see what is the cause. I am very concerned :(
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 for KRAS, NRAS and BRAF
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
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AlexandraZ
Posts: 89
Joined: Fri Aug 23, 2019 8:25 am

Re: Those of you in Japan - PSK Mushrooms

Postby AlexandraZ » Thu Sep 12, 2019 1:41 pm

Siti wrote:
I can totally empathise. Our nurse told us he should be eating fries with mayonnaise to keep his weight up! And I was so shocked to discover the unhealthy food options at the cancer hospital, lots of processed foods like ham, deep fried bitterballens etc.

My husband and I have the same agreement — I do everything from research to appointments, food and preparing our home to make it comfortable for him to endure treatment.

Last night he was admitted to hospital due to high fever and severe abdomen cramps — it hasn’t gone away since Saturday where we dined out for the first time. His blood seem to be fine, now they’re doing more tests to see what is the cause. I am very concerned :(


He is so lucky to have you!

I understand you so well. Jesper was hospitalized during his first chemo and I was a nervous WRECK. It can be so scary. I am sure they will find and handle the cause, or it will go away on its own. I hope he feels better soon!!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

jsbsf
Posts: 19
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Thu Sep 26, 2019 12:11 am

I wanted to follow up on this thread. Today we met with an oncologist at a very highly regarded hospital here in San Francisco for our second opinion. Her recommendations were in line with our oncologist’s.

I brought up turkey tail, modified citrus pectin, and cimetidine. I just haven’t felt comfortable asking our oncologist since I don’t want to advertise that I’m considering it. But I felt comfortable asking her since it was a second opinion from another professional. She wasn’t as familiar with MPC or Tagamet, but was very interested in Turkey Tail. I asked how she felt about taking it with chemo. Her reaction was positive. As far as Tagamet, she mentioned that chemo sometimes causes heartburn anyway, and since Tagamet is for heartburn, maybe it would be beneficial in other ways.

In other words I felt like she was giving me the green light without officially prescribing these supplements.

She said she recommends products from Host Defense. I still lean toward Mushroom Science because so many people here have used their PSK, but she feels good about the quality of Host Defense’s products and isn’t as familiar with others. I was actually quite relieved to hear an oncologist who had an interest in subjects probably not covered in medical school.

So I will tell you 100% we will take the turkey tail after starting chemo next week.

Additionally we had another general chemo class with a nurse at our hospital who said turmeric should NOT be taken while on chemo. So we will stop taking our turmeric.

Hope this helps others like me who have been on the fence about PSK and turkey tail.
DH 61
2019
8/23 Colonoscopy, 5+cm mass
8/26 CT ~1cm liver met?
9/6 PET: liver spot
9/16 MSS. baseline CEA is 4.1; MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Larger liver met ~3.7cm (raised concern), colon tumor stable.
CEA: 10/13,12.5;10/27,4.7;11/12,3.3
11/5 both liver mets almost 2/3 smaller.

Claudine
Posts: 175
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Those of you in Japan - PSK Mushrooms

Postby Claudine » Thu Sep 26, 2019 10:24 am

Thanks jsbsf! Would you mind sharing the actual link you use to order PSK, and the dose you're planning to take?

When I asked DH's onc about supplements, his response was that a balanced, healthy diet goes a long way. Still, I bought Vitamin D3 and DH is now taking 5000 UI/day since we live in a place where people's levels are typically low (we're supposed to get a big snowstorm this week-end already, ugh!). As for turmeric, we'll just stick to what we eat when we make Indian food or the occasional cup of golden milk, there shouldn't be enough in there to cause any damage...
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 6.2
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Claudine
Posts: 175
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Those of you in Japan - PSK Mushrooms

Postby Claudine » Thu Sep 26, 2019 11:04 am

Mmmm I just found this online: "Turkey tail should be used cautiously in patients with known bleeding or clotting disorders and in anyone using anticoagulant or antiplatelet agents, as it been associated with thrombocytopenia". Maybe best to abstain while taking Avastin...
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 6.2
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

jsbsf
Posts: 19
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Thu Sep 26, 2019 8:00 pm

Hi claudine,

I went directly to mushroom science, mushroomscience.com.

And the one I ordered is called “Coriolus Super Strength”. This is the one that is PSK and has been studied a lot. The price was a bit less than on Amazon. The shipping was free and there was a good tracking system. I live in California and it was shipped from Eugene, Oregon. So it arrived pretty quickly. I think we’ll keep ordering these.

I also ordered three others from amazon. If you use amazon, you can search for “turkey tail” and the one the oncologist likes is by a company called Host Defense and it has 444 reviews as of now.

I also ordered another one from a company called Noomadic. I was frantically ordering out of desperation, I must admit. It’s in a small metal can. I also got a bag of one from a company called microingredients. Turkey tail 50:1 extract. It was inexpensive for the amount, and I take some of that myself. We occasionally mix it with a vegetable drink. It’s not the best tasting in my opinion.

So right now he takes 2 mushroom science in the morning and one in the afternoon. He takes one each of the other 2, (host defense +Noomadic) at night before bed. I’m the afternoon we sometimes each have a little of the powdered extract.

I can only say that it’s been a month since he was diagnosed, and he has not started the chemo treatment, yet. We start it on Monday. He hasn’t felt this good all year, and we don’t know why. His bowel movements were very painful as it is a large tumor in the lower rectum. He’s been taking a senakot-s at night which helps a lot. He really thinks the turkey tail helps the most. It could be placebo affect, but the improvement is noticeable, no matter what. He still has discomfort about 10 minutes after a bowel movement, but it’s nothing like the pain from a month or two ago. He has substantially more energy.

All I know is he’s doing something right. He also takes modified citrus pectin and just started taking Tagamet, but only one or two pills per day. I’m not sure how we’ll change the overall supplements after chemo starts, but I don’t think we will change the turkey tail intake.

I owe all this to people on this forum because I wouldn’t know about any of it without them. So very appreciative and hopeful.

Another side note is that he’s being treated with “curative intent” that was really wonderful to hear.

Best of luck to you!
DH 61
2019
8/23 Colonoscopy, 5+cm mass
8/26 CT ~1cm liver met?
9/6 PET: liver spot
9/16 MSS. baseline CEA is 4.1; MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Larger liver met ~3.7cm (raised concern), colon tumor stable.
CEA: 10/13,12.5;10/27,4.7;11/12,3.3
11/5 both liver mets almost 2/3 smaller.

jsbsf
Posts: 19
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Thu Sep 26, 2019 8:19 pm

I should also mention that his blood test numbers are all consistently very well. His blood tests are all absolutely perfect. So, I’m not sure that taking PSK would be a good idea for others. We are not going to take any known NSAIDs during the course of treatment. We need to get a blood test 2 days before each treatment. I’m not sure if that is standard protocol. I hope they will keep us informed if the numbers are off, and maybe give us a chance to address it before each infusion.
DH 61
2019
8/23 Colonoscopy, 5+cm mass
8/26 CT ~1cm liver met?
9/6 PET: liver spot
9/16 MSS. baseline CEA is 4.1; MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Larger liver met ~3.7cm (raised concern), colon tumor stable.
CEA: 10/13,12.5;10/27,4.7;11/12,3.3
11/5 both liver mets almost 2/3 smaller.

jsbsf
Posts: 19
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Fri Sep 27, 2019 10:22 am

Hi Claudine,

I feel like you read this same article:
https://bcct.ngo/search-therapies/searc ... l-mushroom

I discovered how to get the links to the products I described earlier. The noomadic one has a lot of information on its can to describe what it contains.

Turkey Tail Mushroom, 60 Capsules, 500mg Each, Immune Support, Hot Water Extract, Wild Harvested, Fruiting Bodies, 30% Beta-D-Glucans, Also Known as Trametes Versicolor, Coriolus Versicolor, Yun Zhi

https://www.amazon.com/dp/B01E9LKF14/re ... JDbBWYWKA2
https://www.amazon.com/dp/B07P2BWC78/re ... JDbFKDE33B
https://www.amazon.com/dp/B0027VT510/re ... JDb756Z9C0
https://www.amazon.com/dp/B0053DR1EM/re ... JDbK0VZYBV
https://www.amazon.com/dp/B000IMLSQK/re ... JDb1A1NY3G
https://mushroomscience.com/coriolus-super-strength/
DH 61
2019
8/23 Colonoscopy, 5+cm mass
8/26 CT ~1cm liver met?
9/6 PET: liver spot
9/16 MSS. baseline CEA is 4.1; MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Larger liver met ~3.7cm (raised concern), colon tumor stable.
CEA: 10/13,12.5;10/27,4.7;11/12,3.3
11/5 both liver mets almost 2/3 smaller.

Claudine
Posts: 175
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Those of you in Japan - PSK Mushrooms

Postby Claudine » Fri Sep 27, 2019 10:43 am

Wow thanks for all this! I'm going to file it away. For now I think we may stick to vitamin D3 as the only supplement, while DH is undergoing Folfiri + Avastin and it's working as a treatment. But all this information is good to have!
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 6.2
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)


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