Chemo advice

worriedson714
worriedson714 Member Posts: 333 Member
edited May 2021 in Colorectal Cancer #1

         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 . 

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Comments

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    MCV close to or over 100 will

    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
    worriedson714 Member Posts: 333 Member

    MCV close to or over 100 will

    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.

    thank you

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

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    edited May 2021 #4
    Turkey Tail mushroom.  Right

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

  • Forherself
    Forherself Member Posts: 687 Member

    MCV close to or over 100 will

    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.

    Check with oncologist

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

  • NewHere
    NewHere Member Posts: 1,390 Member
    edited May 2021 #6
    Talk To Your Oncologist

    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
    SnapDragon2 Member Posts: 646 Member
    NewHere said:

    Talk To Your Oncologist

    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:

    Gosh YES!  Always do your

    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
    PamRav Member Posts: 336 Member
    edited May 2021 #8
    Practical stuff too

    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
    abita Member Posts: 1,109 Member
    edited May 2021 #9
    PamRav said:

    Practical stuff too

    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 

     

    small frequent meals are so

    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
    worriedson714 Member Posts: 333 Member
    edited May 2021 #10
    all this info going in the chemo notebook

    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
    SnapDragon2 Member Posts: 646 Member

    all this info going in the chemo notebook

    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 . 

    You want hot water extract.

    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
    worriedson714 Member Posts: 333 Member
    edited May 2021 #12

    You want hot water extract.

    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.

    okay

    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
    abrub Member Posts: 2,174 Member

    okay

    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 . 

    Mushroom Science Versicolor PSK

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

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    edited May 2021 #14
    abrub said:

    Mushroom Science Versicolor PSK

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

    Yes it is the most popular,

    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

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited July 2021 #15
    Folfiri

    Folfiri the oncologist is finally ready to start the chemo so I will be posting updates here hopefully you guys can help out with side effects and what to expect . 

  • abita
    abita Member Posts: 1,109 Member
    edited July 2021 #16

    Folfiri

    Folfiri the oncologist is finally ready to start the chemo so I will be posting updates here hopefully you guys can help out with side effects and what to expect . 

    I am not on folfiri, but I am

    I am not on folfiri, but I am on irinotecan. I decline the meds that the use to prevent the diahrhea side effect as I don't get that one. I have been on the drug for 2 years, and only recently found out that it also stops the horrific mucus and congestion I get after the infusion. I had no idea the meds work on that too! And because I usually leave right after, no one noticed. But a couple infusions ago, a nurse saw me coughing to the point I was getting the gag reflex, and she explained to me. I have now taken the meds for two infusions, and it has changed everything!

    So, just in case, he declines that medicine due to no diahrhea, realize if he gets congested after irinotecan, it helps with that too. Now some give the meds regardless, but where I am at now, they don't give it unless it is needed, which is good. We get enough meds, no need to take something that doesn't help. It actually fell on me, because they always ask, and as someone who has had allergies for decades, I didn't even think to explain how bad the congestion was after infusion. To clarify, I blame myself, they don't. They are just super happy they helped me get one less side effect once they knew. The infusion nurses where I go are amazing and so sincere in their compassion for their patients.

  • Real Tar Heel
    Real Tar Heel Member Posts: 290 Member

    Folfiri

    Folfiri the oncologist is finally ready to start the chemo so I will be posting updates here hopefully you guys can help out with side effects and what to expect . 

    Have to say I really dislike

    Have to say I really dislike how it has affected me, not just the weird hair loss pattern, lol. The fatigue has sidelined me, usually debilitating for several days. The 2nd day after infusion I can barely stay awake during the day. They give you steroids that's supposed to help with that but that might last for a day after the infusion. I say that as a warning as I have not found any solution for that. The nausea is the nausea, we all deal with that in our own way whether it's home remedies or zofran. I don't take the 5FU and so far chemo has been working without it (there is a study that backs up the idea that 5FU provides minimal assistance).

    For me, those are the major side effects: fatigue - nausea - hair loss (if you're bothered by it). During the infusion and shortly after I have some musle twitching all over but it goes away. Minor issues with diarrhea and maybe a day of hard stools. You can take something for each if they become a comfort problem.

    Get your dad to stay hydrated. Maybe consider large dose Vitamin D3 (supposed to promote T-Cell formation). Docs may say "oh noes too much Vitamin D" but humans can tolerate much more than the daily recommendation. I'm way over that level and have no ill-effects, nothing showing in blood work, urine tests, etc.

  • DanNH
    DanNH Member Posts: 172 Member
    The Folfiri also knocks dow

    The Folfiri also knocks dow Pam's WBC count so we track that as well. ditto the Vitamin D3! I wish our oncologist would order vitamin D levels with labs. There are some threads that discuss vitamin D3. Pam does 5-FU and is suffering from hair loss. That is very discouraging for her. She cut her hair short for that reason. 

  • abita
    abita Member Posts: 1,109 Member
    DanNH said:

    The Folfiri also knocks dow

    The Folfiri also knocks dow Pam's WBC count so we track that as well. ditto the Vitamin D3! I wish our oncologist would order vitamin D levels with labs. There are some threads that discuss vitamin D3. Pam does 5-FU and is suffering from hair loss. That is very discouraging for her. She cut her hair short for that reason. 

    I think the inrinotecan is

    I think the inrinotecan is causing the hair loss, not the 5-fu. At least, from my experience.

  • Real Tar Heel
    Real Tar Heel Member Posts: 290 Member
    abita said:

    I think the inrinotecan is

    I think the inrinotecan is causing the hair loss, not the 5-fu. At least, from my experience.

    Yeah I had thinning from 5FU

    Yeah I had thinning from 5FU in FOLFOX but not hair loss. One could argue thinning is still hair loss, for me with dreadlocs it was a loss Frown

  • worriedson714
    worriedson714 Member Posts: 333 Member

    Have to say I really dislike

    Have to say I really dislike how it has affected me, not just the weird hair loss pattern, lol. The fatigue has sidelined me, usually debilitating for several days. The 2nd day after infusion I can barely stay awake during the day. They give you steroids that's supposed to help with that but that might last for a day after the infusion. I say that as a warning as I have not found any solution for that. The nausea is the nausea, we all deal with that in our own way whether it's home remedies or zofran. I don't take the 5FU and so far chemo has been working without it (there is a study that backs up the idea that 5FU provides minimal assistance).

    For me, those are the major side effects: fatigue - nausea - hair loss (if you're bothered by it). During the infusion and shortly after I have some musle twitching all over but it goes away. Minor issues with diarrhea and maybe a day of hard stools. You can take something for each if they become a comfort problem.

    Get your dad to stay hydrated. Maybe consider large dose Vitamin D3 (supposed to promote T-Cell formation). Docs may say "oh noes too much Vitamin D" but humans can tolerate much more than the daily recommendation. I'm way over that level and have no ill-effects, nothing showing in blood work, urine tests, etc.

    large dose vitamin d

        Is that in pill form ? my dad has a urostomy so he is already prone to dehydration so been looking for something to help .