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Chemo advice

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

         So my dad's second opinion came and pending a biopsy they agree it is most likely cancer that my dad still has so it looks like we are headed back to chemo . We were really unprepared for the first chemo which caused alot of stress on my dad and family and the chemo ended up having little affect on my dad's cancer and it's one thing I have learned we need to be prepared to fight this disease . I am not sure which chemo they will use yet but I am assuming folfiri since my dad has had folfox . So I am looking for advice on what works to help with chemo side effects . Since my dad has a colstomy big diarrhea is one of the main worries also infection and mouth sores . Any tips as to what works to help manage and or stop these side effects is much appericated trying to get all the information about managing chemo side effects in one place . Also if anyone has any tips about how to increase the odds of the chemo being affective I would appericate those to I can't help but feel like we did something wrong last time . 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

MCV close to or over 100 will help.  Beta Glucan 1,3/1,6 by immunodyne.  Research MCV and CEA in colorectal cancer.

For liver health;Reishi, Niacin, Milk Thistle, K2 as MK4.

PSK PSK PSK for imunity and WBC.

Liverwurst for folate.

And so many more......

Life Extension.org is a great starting point and highly suggest.

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

And I will check out life extension also what is psk ? 

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

Some supplements can interfere with treatment.  Always show a list of things you would like to take and check with the oncologist.  

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Turkey Tail mushroom.  Right now I am taking RealMushroom brand.  High in PSK.

NewHere's picture
NewHere
Posts: 1333
Joined: Feb 2015

There are things that can negatively affect chemo.  For instance when I was on FOLFORI I also got a medical marijuana card.  I did not need to use it, but the intergrative medicine department told me not to use CBD, it would could make the side affects of the chemo worse.  THC was fine.

Also they recommended natural things instead of pills.  I would need to check what I took (been a few years), but instead of magnesium, they would recommend certain nuts.  I know I took pumkin seeds instead of some vitamin or supplement.

Be careful, there is a lot of bad information out there about these things. And bad websites.  Some of them are which of are popular.  For instance, Life Extension is quesitonable for a variety of reasons, including FDA violations:

https://quackwatch.org/cases/fdawarning/prod/fda-warning-letters-about-products-2017/lef/ has the letter which starts off with:

This is to advise you that the Food and Drug Administration (FDA) reviewed your website at the Internet address www.lifeextension.com in December 2016 and has determined that you take orders there for the Life Extension products.  The claims on your website establish that the products are drugs under Section 201(g)(1)(B) of the Federal Food, Drug, and Cosmetic Act (the Act) [21 United State Code (USC) 321(g)(1)(B)] because they are intended for use in the cure, mitigation, treatment, or prevention of disease. As explained further below, introducing or delivering these products for introduction into interstate commerce for such uses violates the Act. You can find the Act and FDA regulations through links on FDA’s home page at www.fda.gov.

Examples of some of the website claims that provide evidence that your products are intended for use as drugs include:

On the webpage titled, “HEALTH PROTOCOLS”, under the disease, “Breast Cancer” you include a link to a page with information about breast cancer and include, “Life Extensions Suggestions” which lists products and directions for use as part of the protocol. For example, as treatments for Breast Cancer, you suggest the following Life Extension products which are for sale on your website:

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Gosh YES!  Always do your homework to find what fits to your benefit.

Example: Cimetidine is listed BUT its not for everyone.  Same for aspirin.  

Read about the cancer protocols, take notes, independently do your research.  I have found most things on their website are harmless but use caution with others for sure.

Be your own advocate, don't jump into anything until you know for sure it will benefit.

PamRav's picture
PamRav
Posts: 306
Joined: Jan 2017

Wont increase the effectiveness, but may help avoid or decrease side effects Drinks lots of water, good oral hygiene, rinsing the mouth with warm salt water after meals,  lots of lotion to the hands and feet,  take the nausea meds as needed, small meals frequently, try to get him outside walking in the nice weather for excercise and his outlook, use sunscreen (some chemos make you more sesitive to sun),if you think something is off with your dad dont be afraid to be pushy with the nurses and doctors,  and please dont spend another minute thinking the chemo wasn't effective last time because you did something wrong   Not every chemo works for everyone and not everyone has the same sort of side effects.  
wishing your dad successful chemo and a return to good health,

pam 

 

abita's picture
abita
Posts: 1014
Joined: Dec 2017

small frequent meals are so important to me. I get REALLY sick to my stomach if I don't have a little something in it, and I don't realize until it gets too late. Much worse when I was on folfox, but still the case.

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Great info anyone know is it turkey tail mushroom or turkey tail mushroom extract that's good ? I am unsure of the difference between those two things . 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

You want hot water extract. Polysaccharides >20% min.

JHS brand/Mushroom Science is having problems with production and are out until who knows when but that is the most popular brand.

I use RealMushrooms brand and NFH brand right now.  The reason I use them is they will send upon request the Certificate of Analysis on % of PSK on the batch you receive.  RealMushrooms has their batches tested at Univeristy of Washington and can't remember where NFH has theirs tested.  This lets you know you are getting the real deal.

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Why not just get the pills ? I know I sound dumb but I know like nothing about supplements so trying to learn as I go . 

 

edit nevermind this just saw that the hot water extract are pills . 

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

is what I was told to take by the Integrative Med Service at Memorial Sloan Kettering Cancer Center.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Yes it is the most popular, but its been unavailable for almost a yr now due to manufacturing issues is what the company said. 

Cancer patients have had to scramble to find a good comparable, smh

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