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What cancer patients, their families, and caregivers need to know about COVID-19.

Besides doing chemo and/or radiation...

Flufff's picture
Flufff
Posts: 47
Joined: Apr 2019

What else do you do to try and reach NED?

 

I'm taking THC and cbd. I'm a vegetarian. And latest I'm trying that repurposed drugs and taking antihistamine. 

I'm going to do even more going forward, I'm just not sure what I should do? I have stage 4B USPC, so I'd better meet it with all I have. ;) Currently being treated with carboplatin and doxil for my first reccurance :(

cmb's picture
cmb
Posts: 470
Joined: Jan 2018

I don't take any supplements, so I can't offer any advice on these. However, we have one member, takingcontrol58, who was diagnosed with a late stage, Grade 3 cancer several years ago who is still NED after revamping her diet, adding supplements and other therapies. You can read a summary about what she did in her profile at: https://csn.cancer.org/user/253111

She's also written posts where she describes in greater detail the different supplements she takes. She does check in periodically, so hopefully she'll see your question and respond. If not, you can try sending her a private message.

I do take Metformin and a daily aspirin, along with a statin for high cholesterol, but I was taking these before I developed cancer so I can't say that any were preventative for me. But there are some studies that suggest Metformin in particular may be helpful for some people with cancer to prevent recurrence.

MoeKay
Posts: 255
Joined: Feb 2004

I recently learned that the FDA is currently investigating Metformin for possible NDMA contamination.  NDMA is a probable human carcinogen and resulted in earlier recalls of certain blood pressure and heartburn medications. 

Here is a link that those of you taking metformin, or considering taking it, may find a helpful staring point:

https://www.newsweek.com/fda-investigating-diabetes-drug-metformin-traces-cancer-linked-chemical-ndma-1476380

While there have been no levels of NDMA found in Metformin to date that would warrant recall in the United States, there have been some recalls overseas.  I'm not on metformin, but if I were, I would want to be aware of this information, to keep tabs on things.  In the past, I had been on the blood pressure medication recalled by the FDA, but I had requested a change in medication several years earlier due to other unrelated cancer concerns I had read about. 

 

MAbound
Posts: 988
Joined: Jun 2016

While she had a different kind of uterine cancer, TakingControl's advice about healing your body to fight and heal cancer makes a lot of sense and definitely bears checking into for your circumstances. She is one amazing and knowledgeable lady!

Forherself's picture
Forherself
Posts: 325
Joined: Jan 2019

https://csn.cancer.org/user/96830    A link to another member who has used alternate addition to her treatment

 

Northwoodsgirl
Posts: 570
Joined: Oct 2009

Have you sought advice from an “integrative medicine” physician? They take a very holistic approach to overall treatment and incorporate “alternative  or complementary “ medicine to traditional treatment protocols. They can coordinate your supplements and nutrition or complementary treatments with your gyn/ Onc. doctor.  

Lori

takingcontrol58
Posts: 257
Joined: Jan 2016

 

Thank you CMB and MAbound for your nice comments.  I haven't been posting as much as I have been working
with cancer patients to help educate and guide them on their journey. 

Fluff,

There is so much to talk about but I will first comment on a few things.  Hopefully you were able to read my profile.You
mentioned you are trying repurposed drugs but did not mention which ones. There are various options.

I myself used metformin (targets  the metabolic dysfunctions in the body, and many researchers believe cancer is
a metabolic disease), aspirin (2 low dose/day- as my integrative oncologist who led me to my remission said
"two for cancer, one for heart disease." I now take one aspirin/day since it has been over five years. I also take
a dose of doxycycline once per year. My integrative oncologist recommended it at my first meeting with him, along
with the metformin, aspirin and many supplements. It is an antibiotic that targets cancer stem cells. It is given when
you are bitten by a tick and stops the bacteria from replicating. I only use it now when I get bit by a tick.

I wish to highlight cancer stem cells.  Those are the cells that chemo and radiation don't kill. They are left behind and
go on to form metastases.  So that is something you should focus on since you have a recurrence. There are no
cancer drugs that target cancer stem cells, but both metformin and doxycycline both target cancer stem cells.

 

Antibiotics that target mitochondria effectively eradicate cancer stem cells, across multiple tumor types: 

Treating cancer like an infectious disease, https://www.ncbi.nlm.nih.gov/pubmed/25625193, Mar 10 2015

The supplement resveratrol also targets cancer stem cells. I use an organic product called Liquid Anthocyanins (resveratrol)
that is made from all the key berries that are known to have anti-cancer compounds. I put it in my daily smoothie with all
types of organic berries.

Since you are getting Doxil, which is known to cause heart damage, metformin helps protect the heart cells from the
damage of Doxil. So that alone would be a good reason to try this drug.  Metformin addresses many of the important pathways
and processes involved in cancer formation- I won't list them all here- but it targets what chemo, radiation and most targeted cancer
drugs don't.  No one drug will help any cancer patient- you have to treat all the issues that led to your cancer (whether physical,
emotional, ot psychological health issues.)  Since you had a recurrence, my guess is whatever was floating in your body when you
first developed cancer is still there.  Comprehensive blood testing is the best way to test for many of the known causes of cancer.

The key is to try to target all the health issues that led to your cancer along with the processes and pathways involved in the formation
of cancer, at the same time.  Cancer stem cells are one element very much tied to the process of metastasis. Angiogenesis, the formation of
blood vessels to feed a cancer cell so it forms a tumor, is another target of metformin. Both are involved in cancer metastasis.
Neither the Carboplatin or Doxil address cancer stem cells or angiogenesis.

You didn't mention if you had genomic testing performed on your original tumor. I would highly recommend this. I think it should
be mandatory at the intial diagnosis of an advanced or metastatic cancer patient. Unfortunately, this is still not the case five years
from when I was first diagnosed with cancer. It will give you a better idea of what went wrong in your body.  Foundation Medicine is the
best out there as you will get a detailed write-up of your mutations and what pathways and processes they are tied to- they will also make
recommendations for targeted cancer drugs for you as well as potential clinical trials that might fit your situation. The medical community
is well aware of many of these common mutations and what causes them and even if there aren't cancer drug available, you can target many
of these things with non cancer drugs, supplements and diet.  But you first need to know what to target.

You mentioned you had a recurrence- can you tell us what that means? Where were the tumors? How large?
How soon after you finished the first chemo treatments did the recurrence happen? Also, what is your CA125 and
do you test for HE4 ( a good marker for recurrence)?

I would be happy answer any other questions you may have. You can email me if you like.  I would be happy
to review some of the key supplements that are known to have anti-cancer properties- also some of the key
blood tests that you would need to get a good handle on the state of your body to identify any issues that
need to be corrected.  It is all about getting the body back into balance.  There are many areas to address.
Once your body is healthy and working like it should, your own immune system will kill any loose cancer cells.

Takingcontrol58

 

 

 

MAbound
Posts: 988
Joined: Jun 2016

TC, you always seem to have something new to teach us and send me digging for more information. I don't think I've ever heard anyone bring up about cancer stem cells before, but for me, that explains recurrences that happen when a person might have been thinking they had beat this beast only to have it come back at them from out of the blue. It shows that a person really does have to keep on working at what got them into trouble in the first place. 

Here's a Sept. 2018 NIH study that's good reading regarding the pros and cons of resveratrol:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6164842/ It's titled: Resveratrol: A Double-Edged Sword in Health Benefits.  That's probably true of anything prescribed or OTC.

As usual, while this shows some real benefit in research, not everyone is going to be able to take it. You are going to definitely want to tell your doctor(s) before you start taking this, especially if you are taking any other meds or supplements that:

1.)have antigoagulant/antiplatelet effects (coumadin, NSAIDS, curcumin, etc),

2.) that would be impacted by the inhibition of CYP3A4 metabolism (think if you are taking anything that makes you refrain from eating grapefruit), (BTW this may help to understand what that's about: https://en.wikipedia.org/wiki/CYP3A4), or

3.) have impaired liver function. 

 Here's an even better link regarding issue number 2. https://www.pharmacytimes.com/publications/issue/2008/2008-09/2008-09-8687 Resveratrol inhibits CYP3A4 enzyme activity of a number of drugs which could result in developing toxic levels of them, so anyone thinking of taking Resveratrol really needs to understand that in relation to anything that they are taking, whether it is prescription or OTC, or talk to a pharmacist or your doctor first so you don't do yourself any harm.

Mercorby
Posts: 23
Joined: Jan 2017

My alternative medicine doctor recommended Berberine which acts like Metaformin and a bunch of other stuff.  I ran it all by my oncologist and he was ok with it - he was skeptical about some of it (there is one from broccoli).

The biggest thing my oncologists think that helps me is that I swim a few miles a week and walk.  The exercise got me through recovery from the origninal surgery, later chemo and radiation, and now keeps me going on my maintenance meds.  Yeah, I watch my diet too.  The genome analyis is important too.  It tells the doctors exactly what they need to do.

We do what makes us feel empowered to control the cancer.  Don't just live in fear of recurrance. Live your life too.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2700
Joined: Mar 2013

I will say, I sat in meeting once heard how they are introducing physical therapy after surgey, just like PT to recovery from an injury, and thought, "Well that makes sense!!" Lying around while your body atrophes causes exhaustion when do need to get going again.  

LisaPizza's picture
LisaPizza
Posts: 280
Joined: Feb 2018

I read something recently too about presurgery physical therapy, so you go in healthier and recover better.

MAbound
Posts: 988
Joined: Jun 2016

In case anyone finds that article "Resveratrol: A Double-Edged Sword in Health Benefits" a bit too technical to slog through to get what you need, I came across: https://www.mskcc.org/cancer-care/integrative-medicine/herbs/resveratrol today which pretty much puts the same information into much easier terms to read. There are some really serious concerns against taking it when you have a hormone driven cancer at this point, so I think I'm going to pass until there's better research on it that removes those concerns. Didn't want to add another pill, anyway. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1618
Joined: Jun 2015

Thanks MA. This is frightening. I have been using this supplement for about a year now. My GP suggested it. I think I will stop TODAY!

 

Really appreciate you taking the time to share the article.

Love and Hugs,

Cindi

 

Flufff's picture
Flufff
Posts: 47
Joined: Apr 2019

And sorry for the late reply. Honbestly, ive been at a bad place. Lost my job and everything sucked.. Its better now :)

Most of what you wrote, im doing now. I'm on that COC protocol, have added antihistamine, aspirin, melatony. That resveratrol i have just ordred. Ot its in my basket, probably adding some more stuff.

I dont know about the genomic testing. I will write the hospital and ask. I did have genetic testing, and one shing showed up. However, they are not sure what that meant, and suggested me to do the test again in 5.10 years... Yes, I'll do that if I'm still alive ;)

My reccurance of USPC was in two lymph nodes that meltet together and measured 2x4 cm in total. Nothing else, but still enough for me to need treatment again. My CA125 was 13 after first line treatment. When having this reccurance, it was 160. I havent had the guts to check the latest number in my portal. Its so bloody scary, reccurances....

I'm reading How to starve cancer......, there were quite a few supplements that she reccomended. I've noted these, and i guess she chose those for her personal cancer?

 

  • CLA eller sea buckthorn olie er måske bedre
  • Niacin
  • Resveratrol
  • Hydroxycitrate
  • Cimetidine or tagamet (short term use!!)
  • Milk thistle
  • Pycnogenol
  • B vitamine
  • Glucosamine sulphan
  • Curcumin
  • Green tea
  • Ellagic acid 
  • Nattokinase
  • Below is to boost immune system:
  • Medicinal mushrooms
  • Maitake-D-fraction
  • Beta glucans
  • MGN3
  • DHEA
  • Mahonia aquifolium (berberine)

Have you heard of these, and do you take them?

 

Its so confusing. So much info and when being in the middle of a horrible chemo regime, its hard to navigate..

 

Appriciate your feedback :)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1618
Joined: Jun 2015

TakingControl58 - You are such a gift to this group of wonderful ladies. Thanks very much!

Love and Hugs,

Cindi

barnyardgal
Posts: 251
Joined: Oct 2017

I am taking Letrozole, which is an aromataste inhibitor. One of the main side effects is joint pain but fortunately I don't have any issue. 

takingcontrol58
Posts: 257
Joined: Jan 2016

In response to barnyardgal-

Letrozole (Femara) inhibits aromatase which is an enzyme in the adrenal glands that produces
estradiol (estrogen) and estrone (converted to estrogen). Even though our ovaries are removed
in a hysterectomy, the adrenal glands still produce estrogen.

Metformin is an insulin growth factor hormone and insulin inhibitor.  Metformin also lowers
estrogen levels, another of the many things it does.

Barnhyardgal, I'm curious.  Did you oncologist test your blood levels for estradiol and estrone and progesterone
before putting you on letrozole?  And does your doctor regularly test these levels to see where they are while you
are on the drug? What led your doctor to recommend the drug for you?

Takingcontrol58

barnyardgal
Posts: 251
Joined: Oct 2017

My tumor was tested and was  estrogen receptive. I was 3a grade 2. I'll have to look back and check blood test results. I had a lot in beginning but more recently just cbc, ca125, and thryroid as I am hyperthyroid. My insulin was checked and I was fine there and not pre diabetic. 

The dr cited recent studies that showed benefit in taking an AI. When she first put me on it in July 2018 she said 2-3 years but told me at the last checkup 5 years would be better. I was fine at my last bone scan but she wants to double check again in a few months as one side effect is bone loss. 

Tamlen's picture
Tamlen
Posts: 241
Joined: Jan 2018

I'm also on an aromatase inhibitor, like barnyardgal, to inhibit my body's production of estrogen. I am on exemestane (similar to letrozole) because my tumor's genetic analysis by Foundation One showed it had estrogen receptors -- essentially, it guzzles estrogen to grow. So the goal is to starve my cancer until either I can't stand the side effects anymore or until the cancer mutates and the AI doesn't work anymore. So far, it's working great -- Stage 4B adenocarcinoma but NED as of last scan. If I'm going to suffer through pretty awful joint pain, it darn well better have good results ;)

Flufff, do you know the genetic makeup of your tumor? Was it tested?

barnyardgal
Posts: 251
Joined: Oct 2017

One thing I forgot to mention about aromatase inhibitor - specifically Letrozole, since that's the one I'm on. My dr recommended I take Vitamin d(after checking my levels) as low vit d can make bone pain worse. I do take vitamin d and calcium, as well as some other things daily. I don't know if I'm lucky or the vitamin d works, but I don't have bone pain.

takingcontrol58
Posts: 257
Joined: Jan 2016

 

Fluff,

 

It is good to see you posting again. I’m sorry about your job loss. I see you are on the COC plan, so I assume you are also taking metformin.

 

Below are many of the key supplements I use today. I use a total of about 44 supplements every day (I won’t list them all). I’ve been using these same supplements for about five years now. My integrative oncologist had a PHd I molecular biology so he was very well versed on supplement.

 

Also, Jane’s cancer was caused by the HPV virus and some of the supplements she used may have also targeted specific things she needed to address.  We all need a customized plan that addresses our own particular health issues. You will have to determine what risk factors for endometrial cancer and cancer in general you possessed when you were first diagnosed. You can do the research yourself or work with a good internist or naturopath or doctor of functional medicine, someone who knows what blood tests to run. Some of your risk factors can then be addressed by supplements, non-cancer drugs, diet or even cancer drugs.

Comprehensive blood testing can help you determine some of the health issues you have that you may not be aware of that may have contributed to your cancer. For example, I would highly suggest you test for metals in your blood- ferritin (iron), mercury, aluminum, arsenic, perhaps lead if you may have been exposed). I recently also tested for cadmium, which they say may be tied to endometrial cancer. Metals generate free radical damage (just like chemo does) which is why it is important to take anti-oxidants.

Here are some supplements that I use.  I group them by their function, though these supplements target many things:
Target viruses and bacteria
oil of oregano
olive leaf complex
aged garlic – also thins the blood like aspirin
IMN-R (comprised of multiple herbs that helps purify the blood), made by Beyond Balance

 

Anti-inflammatories
Curcumin (best supplement for all cancer patients- is anti-inflammatory, anti-bacterial and anti-viral, also targets angiogenesis (formation of blood vessels to feed cancer cells)
Bosswellia (known as frankincense)
Low dose aspirin- the most well- known anti-inflammatory
Black cumin seed oil
Ginger- from the same family of plants as curcumin

Liver Support
Alpha Lipoic Acid
Curcumin
Rosemary
Juice of ½ lemon every day

Immune System Support

Maitake D Fraction
Shitake
Chaga
Coriolus PSK – known as turkey tail mushroom

 Berberine is a supplement that does many of the same things as metformin- I just take metformin- it targets inflammation and many of the dysfunctions of our metabolism.

Also, cimitidene is not a supplement but I had heard about it years ago from a reputable source. It reduces stomach acid and is another drug repurposed for cancer treatment.

Well known anti-cancer supplements

Graviola
Magnolia (known as Honokiol)- very beneficial for endometrial cancer-works synergistically with ginger
Chinese Skullcap
Resveratrol (targets cancer stem cells) – I use a liquid called Liquid Anthocyanins.
Di-limonene- made from orange and lemon peels
DIM – made from cruciferous vegetables (all the anti-cancer vegetables)

Some others I use

Vitamin D
Vitamin B12- must supplement if you are taking metformin (metformin lowers levels of this key vitamin)
Krill oil
Probiotics

I also use four supplements for brain support- they were prescribed to help prevent chemo brain.

Also, genomic testing is when they send a specimen of your tumor in for analysis- Foundation Medicine is the best out there right now. It will give you a much better picture of what may be involved in driving your cancer. I would recommend you ask your surgeon about it.

 

Takingcontrol58

 

Flufff's picture
Flufff
Posts: 47
Joined: Apr 2019

for all the feedback to all. 

Ive been taking a lot of these supplements during this first recurrence, but had to back a bit away as my belly though, OH MY GOD WHAT ARE YOU DOING TO ME :) I threw up. I guess I took too much :D So now I’m introducing a few more every week. ;)

I still have 2 more chemos to do (doxil and carboplatin) and my CA125 is now 35, coming down from 180. I’m thinking. What I do is working (right now anyways) We need to celebrate every big and small victory :) :)

Tamlen's picture
Tamlen
Posts: 241
Joined: Jan 2018

Flufff, are you taking curcumin during chemo? If so, please stop unless it's been approved by your oncologist. Curcumin is known to counteract some of chemo's desired effects. The pharmacist at my major cancer center flagged that for me when I stared there and told me not to take it during chemo under any circumstances. Sloan Kettering in NY also recommends against taking it during chemo, and has info about why (read the section "Do Not Take If") on their well-respected supplement site. The chemo I had, taxol and carboplatin was metabolized by one of the listed enzymes. 

https://www.mskcc.org/cancer-care/integrative-medicine/herbs/turmeric

Flufff's picture
Flufff
Posts: 47
Joined: Apr 2019

Does that also include the real deal? I juice and I use fresh curcumin it it as well?

 

thanks for the heads up <3 

Maxster
Posts: 12
Joined: Apr 2020

I am not a big believer in supplements but am taking Vitamin D for immune boosting and eating 30 grams of fiber per day.   A study out of MD Anderson showed an significant association between outcome with patients on immunotherapy.  The author has also said it is true for chemotherapy and as a cancer preventative.  She works with the microcondria (the gut).  She said not to take probiotics as this messes your natural gut up. It takes a lot to get 30 grams of fiber in your food daily but adding seeds to things helps.  

Flufff's picture
Flufff
Posts: 47
Joined: Apr 2019

once you are done with chemo, then what?

I’ve read a lot online. Currently I’m trying to block cancer pathways. But once hopefully the cancer is gone, what should our strategy be then?

I’m on my first recurrence and I would loooove for it to be the last!!! ;-)

MAbound
Posts: 988
Joined: Jun 2016

First of all...try to do something that makes you feel good each day. Enjoying what you have fought so hard for is the most important!

Second, it will be very hard, but try to forget about recurrence to whatever extent you can until you absolutely have to think about it next, like when a test or check-up looms large. It's always going to be an ever present cloud in you sunny day, but don't let the beast steal anymore of your time than it already has if you can. Not easy, I know, but you are entitled to just live your life between those check-ups. 

Third, keep up the good habits and practices you already have like continuing to drink a lot of water and getting excericise to maintain or regain any stamina that you've lost. I know you won't have any trouble with that because you enjoy it. Those supplements you needed to avoid during treatment, like antioxidants and anticancer supplements, are ok now.

Good luck learning to live your new normal. It can feel a bit like being cast adrift for awhile, but keep telling yourself that you've earned some time to feel normal again. Long may you dance with NED!

 

 

Flufff's picture
Flufff
Posts: 47
Joined: Apr 2019

I know that it will be difficult. Having had a reccurance already. But I will surely try. First though, I have to hear the word, NED.. Still have one chemo left....

cancer really sucks!!

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