PSK- Questions about use, obtaining, links to studies?

LearningAsIGo

Hi all, I have been looking at some additional supplements/treatments to ask my onc about at my first visit for Stage IV. I have come across PSK, or turkey tail mushroom, and am wondering if you have any experience utilizing this, how much your onc recommends taking, and how you obtain a pure form? Here is a link on PubMed that was especially informative. https://www.ncbi.nlm.nih.gov/m/pubmed/18771350/https://www.ncbi.nlm.nih.gov/m/pubmed/18771350/

This is still unreal to me, going for the fight of my life. I just keep looking at my husband and beautiful little boy and know that there’s nothing I won’t do to get to stay with them as long as possible. There’s so much love between us to be shared still!

-B

BRHMichigan

Just prescribed this!

You sound determined and strong. And your youth is on your side! I was just prescribed turkey tail yesterday by my integrative Oncologist. I will take two 600mg pills a day. He just got back from studying in Germany and added this to my regimen. Best wishes and praying for you and all of us with CRC. -Beth

abrub

I was told about it years ago

I'm taking 3 g in divided doses (1500 mg twice a day.)  The MD who recommended it is an Integrative med specialist, and she steered me to the Mushroom Science Turkey Tail PSK (they also make PSP, but the PSK is the tested one.)  I had stopped for a while; my tumor came back.  Since resuming, my tumor growth rate has slowed.  Is it related?  I don't know, but I'm continuing to take it religiously. 

Note, she recommended that I start with 500 mg (1 capsule) twice a day, and add one capsule each week (i.e. week 2:  2 in the am, 1 in the pm; week 3:  2 am, 2 pm; etc. until 3 and 3)  I think I went a little faster.  

Alice

LearningAsIGo

abrub said:

I was told about it years ago

I'm taking 3 g in divided doses (1500 mg twice a day.)  The MD who recommended it is an Integrative med specialist, and she steered me to the Mushroom Science Turkey Tail PSK (they also make PSP, but the PSK is the tested one.)  I had stopped for a while; my tumor came back.  Since resuming, my tumor growth rate has slowed.  Is it related?  I don't know, but I'm continuing to take it religiously. 

Note, she recommended that I start with 500 mg (1 capsule) twice a day, and add one capsule each week (i.e. week 2:  2 in the am, 1 in the pm; week 3:  2 am, 2 pm; etc. until 3 and 3)  I think I went a little faster.  

Alice

Thank you Beth & Alice for

Thank you Beth & Alice for your experience with this. Still unsure of my own plan, will meet with the oncologist soon, and then have lots to discuss!

BRHMichigan

peterz54 said:

A word of caution about uninformed opinions

B,

Unless you are fortunate to have an oncologist who keeps up with resarch outside of standard of care you will likely get an uninformed response.  You may be even told something contrary to what the research points to. 

Mushrooms, in general, seem to have a positive effect on immune function which is what you want to increase.  At least one major cancer center has participated in research on mushrooms.

Dr. Reynolds (U of F, Reynolds Lab) has shown, with model animals, that a combination of EGCG (in green tea), sulforaphane (brocolli sprouts), curcumin (tumeric) has a clear positve effect on survival especially with a low carb diet (low carb meaning low in simple carbs and starches, not low in vegetables).   Here's a presentation if interested   https://www.youtube.com/watch?v=D6RW1fv3KD8&t=1018s

There is also some evidence that you want to lower insulin as it is upstream of growth stimulatiing pathways (mTOR and IGF-1 for example).  You might want to track your metabolic markers like HbA1C, hsCRP, and insulin. You want all of these to be very low.   Your standard oncologist may not track these and may not be interested.   Again, you can take action on this by eliminating junk calories (sugary drinks and deserts) right away.  You'll also want to avoid excess protein (more than about 1 gm per kilo of normal body weight) as protein can be stimulatory to these growth factors as well. 

Moderate exercise and stress control will help too.

good luck

 

    

 

 

 

Good point

Just wanted to point out I notice Alice referenced she is seeing an integrative medicine specialist. I work with both a traditional and integrative Oncologist. Peterz is correct that most traditional Oncologists will not be very knowledgeable about alternatives.

Also, I am taking 1200mg twice a day. Hoping to see good results. 

abrub

peterz54 said:

A word of caution about uninformed opinions

B,

Unless you are fortunate to have an oncologist who keeps up with resarch outside of standard of care you will likely get an uninformed response.  You may be even told something contrary to what the research points to. 

Mushrooms, in general, seem to have a positive effect on immune function which is what you want to increase.  At least one major cancer center has participated in research on mushrooms.

Dr. Reynolds (U of F, Reynolds Lab) has shown, with model animals, that a combination of EGCG (in green tea), sulforaphane (brocolli sprouts), curcumin (tumeric) has a clear positve effect on survival especially with a low carb diet (low carb meaning low in simple carbs and starches, not low in vegetables).   Here's a presentation if interested   https://www.youtube.com/watch?v=D6RW1fv3KD8&t=1018s

There is also some evidence that you want to lower insulin as it is upstream of growth stimulatiing pathways (mTOR and IGF-1 for example).  You might want to track your metabolic markers like HbA1C, hsCRP, and insulin. You want all of these to be very low.   Your standard oncologist may not track these and may not be interested.   Again, you can take action on this by eliminating junk calories (sugary drinks and deserts) right away.  You'll also want to avoid excess protein (more than about 1 gm per kilo of normal body weight) as protein can be stimulatory to these growth factors as well. 

Moderate exercise and stress control will help too.

good luck

 

    

 

 

 

Added note

My Integrative Med physician was part of Memorial Sloan Kettering Cancer Center Integrative Med department, and worked with my traditional oncologists,etc.  And yes, she is an MD.

peterz54

A word of caution about uninformed opinions

B,

Unless you are fortunate to have an oncologist who keeps up with resarch outside of standard of care you will likely get an uninformed response.  You may be even told something contrary to what the research points to. 

Mushrooms, in general, seem to have a positive effect on immune function which is what you want to increase.  At least one major cancer center has participated in research on mushrooms.

Dr. Reynolds (U of F, Reynolds Lab) has shown, with model animals, that a combination of EGCG (in green tea), sulforaphane (brocolli sprouts), curcumin (tumeric) has a clear positve effect on survival especially with a low carb diet (low carb meaning low in simple carbs and starches, not low in vegetables).   Here's a presentation if interested   https://www.youtube.com/watch?v=D6RW1fv3KD8&t=1018s

There is also some evidence that you want to lower insulin as it is upstream of growth stimulatiing pathways (mTOR and IGF-1 for example).  You might want to track your metabolic markers like HbA1C, hsCRP, and insulin. You want all of these to be very low.   Your standard oncologist may not track these and may not be interested.   Again, you can take action on this by eliminating junk calories (sugary drinks and deserts) right away.  You'll also want to avoid excess protein (more than about 1 gm per kilo of normal body weight) as protein can be stimulatory to these growth factors as well. 

Moderate exercise and stress control will help too.

good luck

 

    

 

 

 

peterz54

Yale news on walnut study shows improved survival....

Walnust may be something else to consider adding

The study was for Stage III colcon cancer

Here's the Yale article:

https://news.yale.edu/2018/02/28/nut-consumption-may-aid-colon-cancer-survival

 

 

BRHMichigan

abrub said:

Added note

My Integrative Med physician was part of Memorial Sloan Kettering Cancer Center Integrative Med department, and worked with my traditional oncologists,etc.  And yes, she is an MD.

Thats so great

Mine is an M.D. as well. But I don't discredit other alternative practitioners. I think it's fantastic that MSK offers this. Wish all were open to do so. 

LearningAsIGo

Thanks all for the feedback-

Thanks all for the feedback- my first oncologist has said she will schedule me with their integrative medicine center who is a naturopath. So hopefully that will give me the extra knowledge and plan for supplements and nutrition. So far the oncologist has steered clear of saying ANYTHING about diet, vitamins or supplements other than not recommending Vitamin C in excess. It surprised me she didn’t have more suggestions, but has referred me to nutritionist and naturopath within the cancer care center. I’m meeting with a second oncologist on Monday to see if it’s perhaps a better fit for us. 

Also, sorry for my own delay in response-I’m not sure how to track my posts and see when there’s been a response on here!? Please know I appreciate all the info, and peterz54, your knowledge and encouragement to be my own advocate is SO helpful!

-B.