Those of you in Japan - PSK Mushrooms

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Claudine
Posts: 88
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 (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.

AlexandraZ
Posts: 34
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.

Ehut
Posts: 208
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: 88
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 (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: 46
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 | 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: 46
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 | 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 » 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!!


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