Those of you in Japan - PSK Mushrooms

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Siti
Posts: 45
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Fri Sep 06, 2019 6:54 pm

jsbsf wrote: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.


The oncologist gave you the green light to continue vitamin D3 while on chemo?

I am also very scared that anything my husband eats might affect the chemo. Based on everyone’s feedback, I’ll reduce the blueberries. As for the green tea I’ll need to continue looking for answers.

Finally — I’ll look into vitamin B6 because my husband is really suffering from HFS. Thanks Tupelo Honey!
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: 282
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 7:47 pm

Siti wrote:
jsbsf wrote: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.

The oncologist gave you the green light to continue vitamin D3 while on chemo?

I know you weren’t asking me, but I’ll add that my onc is super-conservative with supplements and vit D3 is the only one he allows me to take during chemo (I take 5,000 IU/day). He said it’s not a strong antioxidant and some evidence suggests benefit in CRC patients.
Last edited by Rock_Robster on Fri Sep 06, 2019 11:02 pm, edited 1 time in total.
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
pT3pN1apM1a; 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
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

jsbsf
Posts: 9
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 10:09 pm

Yes, the oncologist recommended d3 supplement throughout chemo.

He’s getting FOLFOX. 14 day cycles. The first day he gets 3 of something and comes home with a pump for something else. Day 2 is the pump at home. Day 3 is return to disconnect the pump. This every 14 days, 12 times. If my math is right, that’s 24 weeks of chemo. It all starts on 9/30.
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 1cm liver spot looks like stage IV
9/16/19 MRI
9/23/19 Port, tag liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

Siti
Posts: 45
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Sat Sep 07, 2019 2:08 am

Hehe thanks Robster! I really appreciate the feedback nonetheless. By the way, I used to live in Melbourne long time ago for a couple of years and certainly miss it very much. Such an awesome city and an amazing country.

It’s gives me assurance that taking Vit D3 is ok since 2 doctors from US and Aussie said ok :lol:

As for Tumeric, the science is officially if you find the time to read this, it looks really promising. The results published only a month or so ago: https://lra.le.ac.uk/handle/2381/43690

The full study here 2014: https://lra.le.ac.uk/bitstream/2381/359 ... grbphd.pdf
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: 282
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Those of you in Japan - PSK Mushrooms

Postby Rock_Robster » Sat Sep 07, 2019 2:55 am

Siti wrote:Hehe thanks Robster! I really appreciate the feedback nonetheless. By the way, I used to live in Melbourne long time ago for a couple of years and certainly miss it very much. Such an awesome city and an amazing country.

It’s gives me assurance that taking Vit D3 is ok since 2 doctors from US and Aussie said ok :lol:

As for Tumeric, the science is officially if you find the time to read this, it looks really promising. The results published only a month or so ago: https://lra.le.ac.uk/handle/2381/43690

The full study here 2014: https://lra.le.ac.uk/bitstream/2381/359 ... grbphd.pdf

Indeed Melbourne’s a great place! I was living overseas when diagnosed but decided to come back here for treatment for a variety of reasons - the weather not being one of them as it’s bloody freezing at the moment! Hope you’re somewhere sunnier these days :)

Interesting study - thanks for sharing. My naturopath continues to send me curcumin research and my onc (who is also a research lab head) continues to shoot them down. One thing that jumped out about that is they had 28 patients in a 1:2 randomisation, meaning about 9 people in the control group - I’m amazed they could achieve statistical significance on OS with that powering (I note they missed it on PFS, but you could I guess that’s secondary if other results were reliably good).
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
pT3pN1apM1a; 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
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

Siti
Posts: 45
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Sat Sep 07, 2019 3:42 am

Rock_Robster wrote:Interesting study - thanks for sharing. My naturopath continues to send me curcumin research and my onc (who is also a research lab head) continues to shoot them down. One thing that jumped out about that is they had 28 patients in a 1:2 randomisation, meaning about 9 people in the control group - I’m amazed they could achieve statistical significance on OS with that powering (I note they missed it on PFS, but you could I guess that’s secondary if other results were reliably good).


So your oncologist advised against taking them entirely or just during chemo?

The thing is what we know for sure is chemotherapy alone is not going to be sufficient for stage IV — so we must do something more to improve outcomes. From what I’ve observed from all the long term survivors here is that they’ve done more than just 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

AlexandraZ
Posts: 34
Joined: Fri Aug 23, 2019 8:25 am

Re: Those of you in Japan - PSK Mushrooms

Postby AlexandraZ » Sat Sep 07, 2019 6:32 am

Wow, it's interesting how widely opinions vary on this point. Our oncologist here in Denmark said any supplements were ok, just steer clear of huge doses of antioxidants, as in vitamin IVs, etc. My 28-year-old boyfriend has just had 6 months of FOLFIRI for colon cancer with liver and lung mets and he has taken supplements the whole way through. He has had a great response, about 50% reduction in tumor sizes, but it's hard to say if it would have worked better or worse without the supplements!

I will however say that his blood work has been great - one doctor even commented that he couldn't tell from his blood that he was getting chemo. WBC and hemoglobin, etc are all well within normal range. We have never had to delay treatment because of his blood or anything. So I'd say his healthy diet and supplements have definitely helped him tolerate the chemo better as well.

It's really difficult to say on these things though, as all people are different and cancer seems to work in different ways in everyone as well. My boyfriend also started with an extremely high CEA (70.000) which has dropped to 210. But like I said, impossible to tell if he would have responded as well, better or worse without the supplements.

Siti
Posts: 45
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Sat Sep 07, 2019 6:37 pm

AlexandraZ wrote:Wow, it's interesting how widely opinions vary on this point. Our oncologist here in Denmark said any supplements were ok, just steer clear of huge doses of antioxidants, as in vitamin IVs, etc. My 28-year-old boyfriend has just had 6 months of FOLFIRI for colon cancer with liver and lung mets and he has taken supplements the whole way through. He has had a great response, about 50% reduction in tumor sizes, but it's hard to say if it would have worked better or worse without the supplements!

I will however say that his blood work has been great - one doctor even commented that he couldn't tell from his blood that he was getting chemo. WBC and hemoglobin, etc are all well within normal range. We have never had to delay treatment because of his blood or anything. So I'd say his healthy diet and supplements have definitely helped him tolerate the chemo better as well.

It's really difficult to say on these things though, as all people are different and cancer seems to work in different ways in everyone as well. My boyfriend also started with an extremely high CEA (70.000) which has dropped to 210. But like I said, impossible to tell if he would have responded as well, better or worse without the supplements.


Hey Alexandra

Thanks for joining our conversation. It’s wonderful that your boyfriend responded very well to chemo, that certainly is very encouraging. I am not surprised that a healthy diet, supplements and exercise played an important role. Would you mind sharing what supplements he took and what kind of diet he was on?

For me, I try my best to provide the best nutrition for my husband through well balanced meals but he’s beginning to lose his appetite and also had diarrhoea today which I can foresee would be a challenge if it continues.
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: 9
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Those of you in Japan - PSK Mushrooms

Postby jsbsf » Sat Sep 07, 2019 8:52 pm

I just searched for “turkey” and scoured the site for references to turkey tail. I had been trying to find specifically psk. There were a lot of people who couldn’t tell which was the one we want. The winner seems to pretty clearly be from Mushroom Science. You can find it here:

https://mushroomscience.com/coriolus-super-strength/

They sell another one for about half the price, which is psp.

I just ordered one, and now I can add it to my collection. I guess the others are fine too, but the people here seem quite knowledgeable, and I feel comfortable taking their advice.

Now I need to just find the right Tagamet / cimetidine...
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 1cm liver spot looks like stage IV
9/16/19 MRI
9/23/19 Port, tag liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

AlexandraZ
Posts: 34
Joined: Fri Aug 23, 2019 8:25 am

Re: Those of you in Japan - PSK Mushrooms

Postby AlexandraZ » Sun Sep 08, 2019 3:42 am

Siti wrote:
Hey Alexandra

Thanks for joining our conversation. It’s wonderful that your boyfriend responded very well to chemo, that certainly is very encouraging. I am not surprised that a healthy diet, supplements and exercise played an important role. Would you mind sharing what supplements he took and what kind of diet he was on?

For me, I try my best to provide the best nutrition for my husband through well balanced meals but he’s beginning to lose his appetite and also had diarrhoea today which I can foresee would be a challenge if it continues.


Hi Siti!

I know how challenging it can be! My boyfriend lost weight in the beginning too, but now we have found a routine that works, with high-calorie foods that are healthy and that he enjoys. On the days he is wearing the pump at home, eating can be a challenge. I find smoothies are a good way to get good food into him, but he is generally very disciplined and pushes himself to eat because he knows he need the fuel.

I can definitely share the data regarding his diet and supplements! Just take it with a grain of salt, as the opinions vary so widely on this point and I wouldn't want to give you any advice that was harmful. :) As far as diet is concerned, we have switched to 100% (at least 95%) organic. He eats a lot of vegetables, whole grains, healthy fats and some fruit. He eats no red meat, only chicken and fish. No regular dairy but some goat's cheese, and he does eat eggs. I also make him a green juice every day, and he drinks green tea. Mainly we are avoiding all processed foods, simple carbs (white bread, white pasta, cornflakes, etc), refined sugars and harmful fats. He needs a lot of food to maintain his weight, but we have found a way that works, and we find that he recovers much faster from the chemo on a nutrient-dense diet. Since changing his diet, his digestive problems have gone away too, and he has regular bowel movements with no problems. He says his digestion has never been better, and the bloating and pains which led to his diagnosis have disappeared.

He takes a lot of supplements: A, B complex, C, D3, E, evening primrose oil, fish oil, coQ10, green tea extract, turmeric, magnesium, selenium, MSM, Chinese wormwood... I hope I'm not forgetting any. We did go see an orthomolecular doctor who approved our supplement list and dosages. But again, I want to stress that I am no expert and there are such conflicting opinions on this point! I would hate to recommend anything that could have a bad effect.

Best of luck! Your husband is lucky to have you :)

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

Re: Those of you in Japan - PSK Mushrooms

Postby cckc57 » Mon Sep 09, 2019 12:34 pm

As others have mentioned, turmeric may be supportive, but a key is to look at the absorption of it. There are challenges absorbing in the intestinal tract. So, forms that are hydro-soluble absorb better.

Claudine
Posts: 84
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Those of you in Japan - PSK Mushrooms

Postby Claudine » Mon Sep 09, 2019 4:07 pm

I'm reading conflicting information online (not surprising...). Some sites say it's better absorbed when taken with piperine (black pepper) whereas others say that does not help at all and that it's fat that improves absorption.
Those of you who take it, what are you doing? Are you using pre-mixed supplements? How about simply making golden milk? There's a nice recipe here:
https://www.epicurious.com/recipes/food ... rmeric-tea

Also, on the MSK website, they recommend against taking turmeric if you are on blood thinners as it may increase your risk of bleeding... Since my husband is taking Avastin, I fear that may not be good for him... I guess I'll ask his onco next time we see him
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 (activity on PET scan, no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm hypermetabolic left adrenal mass 03/14/2019, 4.4 cm 05/21/2019
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3
Scan 05/21: Multiple small lung nodules shrinking or stable compared to 03/14 scan.

Siti
Posts: 45
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Tue Sep 10, 2019 3:52 am

AlexandraZ wrote:

I can definitely share the data regarding his diet and supplements! Just take it with a grain of salt, as the opinions vary so widely on this point and I wouldn't want to give you any advice that was harmful. :) As far as diet is concerned, we have switched to 100% (at least 95%) organic. He eats a lot of vegetables, whole grains, healthy fats and some fruit. He eats no red meat, only chicken and fish. No regular dairy but some goat's cheese, and he does eat eggs. I also make him a green juice every day, and he drinks green tea. Mainly we are avoiding all processed foods, simple carbs (white bread, white pasta, cornflakes, etc), refined sugars and harmful fats. He needs a lot of food to maintain his weight, but we have found a way that works, and we find that he recovers much faster from the chemo on a nutrient-dense diet. Since changing his diet, his digestive problems have gone away too, and he has regular bowel movements with no problems. He says his digestion has never been better, and the bloating and pains which led to his diagnosis have disappeared.

He takes a lot of supplements: A, B complex, C, D3, E, evening primrose oil, fish oil, coQ10, green tea extract, turmeric, magnesium, selenium, MSM, Chinese wormwood... I hope I'm not forgetting any. We did go see an orthomolecular doctor who approved our supplement list and dosages. But again, I want to stress that I am no expert and there are such conflicting opinions on this point! I would hate to recommend anything that could have a bad effect.

Best of luck! Your husband is lucky to have you :)


Hey Alexandra,

You’re amazing! Your boyfriend is very lucky to have you :) Also kudos to all the caregivers here because everyone has been working tirelessly researching and working on the best outcome for their loved ones. Thank you for sharing your story and funny enough my husband never had any stomach issues with home cooked food since his surgery till chemo, only the first time few days ago when he had his “cheat day” at a restaurant — must have been the pizza!

I wish you and your boyfriend all the best. Please feel free to share any useful info here in the future :)

Take care,
Siti
Last edited by Siti on Tue Sep 10, 2019 4:21 am, edited 1 time in total.
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

Siti
Posts: 45
Joined: Thu Aug 01, 2019 10:58 am

Re: Those of you in Japan - PSK Mushrooms

Postby Siti » Tue Sep 10, 2019 4:19 am

Claudine wrote:I'm reading conflicting information online (not surprising...). Some sites say it's better absorbed when taken with piperine (black pepper) whereas others say that does not help at all and that it's fat that improves absorption.
Those of you who take it, what are you doing? Are you using pre-mixed supplements? How about simply making golden milk? There's a nice recipe here:
https://www.epicurious.com/recipes/food ... rmeric-tea

Also, on the MSK website, they recommend against taking turmeric if you are on blood thinners as it may increase your risk of bleeding... Since my husband is taking Avastin, I fear that may not be good for him... I guess I'll ask his onco next time we see him


Hi Claudine,

Thanks for highlighting. Please share what your Onc says when you see him next.

Indeed my husband is also taking Avastin. We’re seeing a dietitian on Thursday, hopefully he/she will be helpful with some input.

My husband’s cycle is 3 weeks. Day 1 infusion OX + Avastin with capecitabine at night. Then continue daily cap. for 2 weeks. For the first week, we stopped all supplements, omega 3 foods, green tea or juices. Then on the second week he resumes Tumeric C3, Vit. D3 pills, green tea and juices. On his 3rd week which is his “break”, he adds omega 3 to the diet and also eat a lot of fresh mushrooms (maitake, shiitake, etc). I have not received the PSK pills from mushroom science but we’re thinking of including that during his “break” to build his immunity and strength before the next cycle.

There’s so many conflicting information out there and also the doctors themselves aren’t too sure so it’s always a “NO” because they don’t want to recommend anything without proper clinical evidence.

Quite frankly I am very confused myself and we’re just going with a hunch. Please feel free to share any knowledge with regards to complementary treatment that you may have.

Good luck with everything!

Siti
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: 282
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Those of you in Japan - PSK Mushrooms

Postby Rock_Robster » Tue Sep 10, 2019 4:38 am

Claudine wrote:I'm reading conflicting information online (not surprising...). Some sites say it's better absorbed when taken with piperine (black pepper) whereas others say that does not help at all and that it's fat that improves absorption.
Those of you who take it, what are you doing? Are you using pre-mixed supplements? How about simply making golden milk? There's a nice recipe here:
https://www.epicurious.com/recipes/food ... rmeric-tea

The challenge with turmeric is overcoming the very low bioavailability of the active ingredient you’re after - which is curcumin. There are two ways of doing this - one is as you say to combine with piperine, which slows the breakdown of curcumin in the liver and increases absorption time significantly. Many curcumin supplements combine these two in one pill for this purpose. The alternative is to buy a product called “theracurmin”, which is a nano-particle form of curcumin which has much higher availability/potency (around 3x normal I believe) and does not require combination with piperine for absorption. Many clinical trials into curcumin use this product.

My naturopath prescribes 3,000 mg/d of curcumin equivalent, split over 3 doses. I’m not sure if it would be practical to get therapeutic doses of curcumin by consuming turmeric through diet, though I guess any is better than none. My oncologist does not support using curcumin during chemo due to uncertain interactions (positive or negative).

As others have said you do need to watch for bleeding issues at higher doses if you’re on anticoagulants or Avastin, or potentially avoid curcumin supplementation entirely to be safe.

Cheers
Rob
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
pT3pN1apM1a; 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
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal


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