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NED from Stage IV metastatic endometrial cancer

takingcontrol58
Posts: 235
Joined: Jan 2016

Hi,

This is my first posting to this site.  After reading many of the entries on this site, I felt I had to join.

 

August 2014 - experienced post-menopausal bleeding - had ultrasound- endometrial
lining was .8-.9cm-double what it should be(normal is .4cm)

Sept 2014 - endometrial biopsy was not totally conclusive but precancer found-
recommended repeat of test or D&C

October 2014- diagnosed with Grade 3 endometrioid endocarcinoma with a D&C.  (endometrial cancer)

November 2014- total hysterectomy, plus removal of ovaries, fallopian tubes, cervix, 11 lymph nodes, part of omentum and perirectal tumor <1cm, cancer went into lymphatic system.Staged as Stage IIIb,Grade 3.

January 2015- CT scan prior to recommended treatment of radiation and chemotherapy.

Cancer had metastasized to liver, spleen, vaginal cuff/outer rectum (5cm) plus nodules on lung, spleen, kidneys &outercolon- 34 cm of measurable tumors in total - two months after surgery priorto any treatment - MSK radiologist told my husband he believed I had 4-6 months to live.  Now Stage IV. No radiation.
Was told radiation destroys the liver.

My gynecological oncologist/surgeon recommended I meet with integrative oncologist, Dr. Mitchell Gaynor (NYC) - He wrote The Gene Therapy Plan - he saved my life. He died a few weeks after I went into complete remission. 

January  30, 2015- started chemo infusions at MSKCC of Taxol/Carboplatin-joined a trial that added metformin or placebo to Taxol/Carboplatin treatment
(may have been getting a placebo-will find out when trial ends in Sept 2019)

end of February 2015- met with Dr. Gaynor, after 2 chemo infusions - tested various blood markers- were extremely high - CA125 was 280 (there are many other cancer markers that I am tested for regularly ).  

Dr. Gaynor put me on the real metformin because I am insulin resistant (and metformin is known to have anticancer properties for many types of cancers)
I removed myself from the trial at MSKCC.  Metformin was discovered in the 1950s- approved in 1995 by FDA. 125Million people around the world take drug for
diabetes and insulin resistance plus a few other conditions, like PCOS, and has been known for quite some time to have anti-cancer benefits for
some of the most popular cancers. Dr. Gaynor also put me on 34 supplements.

Mid-March 2015- third chemo infusion. 

March 23, 2015 -  met with Dr. Gaynor after 3 chemo infusions and one month on metformin- CA125 was down to 20

March 31, 2015- another CT scan- went from 34cm of tumors to 4cm- MSKCC could not explain why

April - May 2015 -Had remaining  3 chemo infusions of Taxol/Carbo

June 2015-  another CT scan - now down to 2cm of tumors (on spleen and rectum). MSKCC wanted to give me up to 4 more chemo infusions- I refused.

Dr. Gaynor increased my dosage of metformin and added 9 more supplements to my regimen.

August 2015- PET/CT declared NED, two weeks before Dr. Gaynor died. 

 You can research thousands of articles on metformin at www.pubmed.gov (National Insititutes of Health).
One of the articles calls metformin a "magical" drug. Made from the French lilac.

My surgeon had genomic testing performed so I was able to research that metformin targets two of those mutations, for which there are no
successful targeted therapies yet, except Everolimus was recommended for one of my mutations by my integrative oncologist but I refused
it because the metformin was working so well.

If you have advanced or metastatic EC, I believe you have to attack cancer from many directions. You have to correct the issues that are
driving YOUR cancer. You have to address theroot causes of your cancer.  I stopped eating processed food, eliminated almost all sugar
(I was a sugar junkie), eat mostly organic, hormone free meat and chicken, drink only purified water, walk 2 miles five days a week, 
and cut out 99% of the wine I was drinking, also down 40 pounds. 

I also take 1 low dose aspirins each day along with the metformin and supplments. I also get monthly massages using frankencense oil. You
need to figure out the causes of your cancer and address your underlying health issues. I figure you have to get back to your healthier self,
prior to when you had cancer. You have to figure out what was fueling your cancer. For me, I believe it was my high insulin growth factor-1 
(IGF-1), high serum insulin and high iron levels (ferritin). Every cell in the body needs iron to divide, and cancer cells are dividing rapidly.
Cancer cells have an enhanced dependence on iron relative to normal cells- a term called iron addiction. High iron levels are seen in many
patients with cancer.

There is no one single treatment that will heal you. You have to address all your own health issues to fight your cancer, or at least those you
have control over. And you have to boost your immune system (I do this with supplements and my healthy diet). Standard cancer
treatments are only a small part of the picture. You need a comprehensive plan to heal cancer and you have to follow it for the rest of your life.

Goal is to remain in remission.  Last chemo May 2015.  Continue to take metformin, aspirin  and 44 different supplements each day, 
have maintained my ideal weight, exercise everyday and eat a healthy organic diet.

Still NED as of June 2019.  It is now over 41/2  years since I began this journey.

Hope this helps some of you looking for other solutions. My message is you can heal metastatic cancer.
takingcontrol58

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1483
Joined: Jun 2015

wow, what a journey you have had!  and quite different than anything else I have seen.

thanks for taking the time to document your treatment. that really is amazing.

so glad you are NED and I pray that you stay that way!

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1305
Joined: Oct 2015

 I'm always glad to hear "NED" especially from a Stage IV diagnosis!!  You sure have been through a lot in a short time but things seem to be going your way.  I have just been prescribed Metformin for my high A1c caused by the chemo.  Hopefully it will keep my UPSC from spreading!!!

Love,

Eldri

molimoli
Posts: 514
Joined: Aug 2014

Takingcontrol58 your information is priceless Thanks for sharing.  I wish you continued positive progress. Welcome to the board .

Moli

Cucu me
Posts: 214
Joined: Apr 2015

and WOW, such a story!

Copy and paste your whole post in "About me " place, so more people can see it.

Your case is like miracle.

I read about few doctors treating patients with alternative methods died in 2015

and I'm very sorry for them.

I'm stage 4 too, finished chemo in October and so far ok with some complains.

My next scanner is in March, so we'll see.

I'll deffinately have in mind metformin.

Thanks for sharing

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

I am so thankful for this site. The fact that you are willing to share your experience is so informative. My genetic testing was so discouraging - 3 markers and no therapies - one with all the worst stats attached to it. But I am living on the "I am a statistic of ONE" mantra and will never stop questioning my treatment.

At Roswell, no one is talking to me about supplements. I will ask about the metformin, but would you mind sending a list of the supplements you are on? I would like to ask my doctors specifically. When asked, they don't offer - they say I'm doing everything I need to do. Maybe if I asked more specifically they would offer some support. 

takingcontrol58
Posts: 235
Joined: Jan 2016

Brady,

I take so many supplements that I can't list them all here.  Many I took focused on the immune system and liver, my hair, my brain, anti-bacterial, anti-fungal and canti-ancer specific. 
Curcurmin, resveratrol, garlic, oil of oregano, bosswelia (frankencense, like the wise men's gift), arteminisin (used today to treat malaria), graviola and medicinal mushrooms (Maidake-D
fraction, Shitaki, Chaga).  Also Krill oil and Vitamin D3. Just to name a few.  Excellent book to read is Natural Strategies for Cancer Patients, by Russell Blaylock.

Also take two low dose aspirins a day. One in AM, one in PM. Aspirin inhibits COX2 enzyme, which causes inflammation. That's why cardiologists recommend to their heart patients. Plus
aspirin thins the blood- cancer patients have thicker blood, which is why heart patients take as well. Talk to your doctor.

I never once got sick on chemo- never had nausea or threw up -still have my original bottle of Zofran.  White blood counts never dropped so didn't haveto take Neulasta or Neupogen,
which have their own bad side effects. I think the supplements helped me never get sick.

You should viisit with a naturopath or integrative doctor who specializes in these supplements as you need to take what would be relevant to your situation.  Plus you need certain
formulations to be effective. I wouldn't just go out and start taking supplements without the supervision of a doctor.  My  integrative doctor was a molecular biologist.

A site that is very useful is www.thetruthaboutcancer.com.  They have a 9-part video series you can watch.  You can learn all about the history of the cancer industry and
many of the alternative solutions available.  They typically post about alot of different types of supplements.  Also www.lef.org, which is where I first learned about metformin.
Very informative site.  You can sign up and receive their magazines which delve into all the various supplements.

Also, what were the mutations you had on your genomic testing?

Takingcontrol58 

Ilda28
Posts: 8
Joined: Apr 2015

where do u buy your supplements from ?

takingcontrol58
Posts: 235
Joined: Jan 2016

I get my supplements at Vitahealth Apothecary in NYC    212-628-1110. They ship them to me.

 

Takingcontrol58

Ilda28
Posts: 8
Joined: Apr 2015

Taking control, who was your oncologist at SK ?

Now that doctor Dr. Mitchell Gaynor no longer lives, is there another doctor who recommends the supplements?

lisewick
Posts: 2
Joined: Oct 2017

Though I would add to the post- i take several supplements and just started on Metformin for my recurrent endometrial cancer that is inoperable (due to scarring, location, and size) after chemo and radiation. Good news is the my CA 125 is only 9 and the tumor has shrunk by 1/3!! I learned a TON about supplements from that Natural Healing book mentioned earlier, and from Chris Beat Cancer.com. Firm believer that much of my  success in no further growth and reduction of mass  has been the addition (on my own research) of supplements like Curcumin, D3, Astragalus, Black Seed Oil, Vitamin C, Beta Glucan, KyoGreens, Cruciferous Veggie supplements, B complex, Green Tea, Essiac Tea, plant based foods, nut milks instead of dairy, Oil of Oregano, MSM, and more.  My oncologist has repeatedly said i'm one of their highest functioning patients . Even if the supplements don't kill it all, you'll feel confident in doing all you can and you'll feel much better!  

Nellasing
Posts: 529
Joined: Oct 2016

I love Chris Wark!  Christbeatcancer.com.  I just did the free sq. 1 program and dialed in on nutrition even more and added some of those wonderful supplements he mentioned like Amla and Moringa and some you mentioned.  We are also juicing.  Feeding my body tons of nutrients.  Can't hurt right?!  All the best to you- keep us posted!!  (((HUGS)))

pgdaughter
Posts: 22
Joined: Jan 2017

Hi takingcontrol58

Could I ask what type of endo cancer did you have? My mother has serous and I'm wondering if the metformin would be effective for her.

 

 

 

takingcontrol58
Posts: 235
Joined: Jan 2016

I was diagnosed with endometrioid adenocarcinoma, but my surgeon thought it might be serous
because it was so aggressive. It was Grade 3 and growing very fast.  Did your mother have genomic testing performed?

Metformin is very effective for mutations on the P13K/Akt/Mtor pathway. Metformin inhibits the pathway-
My mutation activated this pathway.   PIK3CA, PIK3R1 (a mutation I had) and PTEN. These are all on this
PI3K pathway. If you know your mom has one of these mutations, metformin could be very effective.

If your mom has borderline high glucose levels, high levels of IGF-1(Insulin Growth Factor), which usually raised
at a diagnosis of endometrial cancer or is overweight, I would talk to her doctor about getting on the drug.
If she is diabetic and taking another diabetes drug, you should ask about getting her switched to metformin because
it is the only diabetes drug that has anti-cancer properties.  It also stops angiogenesis, which is the creation of new
blood vessels which exist if you have metastasis. The blood vessels feed the cancer cells so they can grow into a new tumor.

Serous also has mutations of TP53- metformin restores TP53 expression.

There is no harm in trying the metformin- she has nothing to lose.

Takingcontrol58

pgdaughter
Posts: 22
Joined: Jan 2017

Thanks takingcontrol58. Wasn't aware of Metformin's benefits to such extent. I'll read into it and bring up with the onco. You are right, no harm in trying.

takingcontrol58
Posts: 235
Joined: Jan 2016

Pgdaughter,

If you go to the website of the National Institutes of Health, www.pubmed.gov, you will find over 3000 articles
on "metformin and cancer."

Two good ones to read are:
1) The Emerging Genomic Lndscape of Endometrial Cancer - Oct 2013 PMID 24170611
2) Metformin in cancer prevention therapy - Jun 2014 PMID 25333032

The reason metformin is so effective for endometrial cancer is because endometrial cancer cells
have a large amount of insulin receptors on their surface.

One other thing- Avastin is the drug that is also supposed to stop angiogenesis,but has some serious
side effects.  It was pulled off the market in 2010 because of the harm it was causing in breast cancer patients
and had more risks than benefits. Avastin was recommended for me because of all my metastases, but since
the metformin was working so well (after one month),I refused the Avastin.  Your doctor may recommend this drug and
may not want to prescribe the metformin. But it is your choice.  Personally, I would try the metformin first- there is much less risk.
If Avastin had such great results for advanced cancer patients, they would be giving it to everyone.

Takingcontrol58

 

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

I'm talking to my neologism also, about the metformin- Stage3 grade 2/3 endometrial adrenocarcinoma- diagnosed June 2016- I go Friday for my first follow up since finishing my treatment- chemo, external and internal radiation- prayers we all get through this

pgdaughter
Posts: 22
Joined: Jan 2017

The issue is Mum started Metformin (oral) in early December last year. At the time we were not aware of her cancer recurrence. She started to experience increasing shortness of breath and weight loss. We mistakenly associated the symptoms with Metformin since it was the only item new to be introduced in her life. We halved the dosage of Metformin and she felt better but the symptoms persisted. When she did the routine blood test and the scans and discovered the metastases to lungs she stopped the Metformin, and alleges that the shortness of breadth improved. Although the week after we felt the shortness of breadth intenstified and now we know it's due to the UPSC having spread to the lungs. 

It's all very confusing. The articles you shared and your positive experience make us want to try Metformin again. At the same time we worry if the Metformin is somehow not suited to Mum? 

takingcontrol58
Posts: 235
Joined: Jan 2016

Pgdaughter,

Did your doctor discuss some of the potential side effects of metformin?
They are bloating, stomach pain/upset, diarrhea, gas, indigestion, constipation.
You shouldn't take the drug if you have kidney issues.

Make sure your mother is getting the extended release version- it will prevent some
of these issues. Maybe she was started on too high a dose.  I was started on 1000mg/day,
500MG in AM and 500MG in PM, then was moved to 1500mg/day after chemo. Ususally a doctor
will start you on a lower dose to see how you tolerate the drug.

I also understand that metformin mimics "caloric restriction", which is another of its cancer
fighting abilities, and may help you lose weight. Did she lose alot of weight or a few pounds?
Keeping a normal weight is one of the best thingsyou can do to prevent Endometrial cancer.

The only serious side effect is called lactic acidosis, where the blood becomes too acidic.
Chest pain, rapid breathing, rapid heart rate, weakness, sweating, cold and clammy skin
and unconsciousness are some of the  symptoms. You should be able to read more on
the document that comes with the prescription.

What does the doctor say?  Was it prescribed by her oncologist or a gyn or PCP? This
is one of the most prescribed drugs in the world so her doctor should be aware of the side effects.

The drug really has some great benefits.  Perhaps you can discuss the drug with a different doctor
who is more familiar with metformin.

Also, I had a few lung nodules when my cancer metastasized, but they vanished when I
started taking the metformin (I was also getting my chemo  at the same time).

 

Linda

 

 

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

At this point I am confused about my treatment plan.  My Oncologist recommended 6 cycles of chemo (21 day cycles/taxol&carbo) Prior to chemo#4 my Oncologist gave results of ct scan

which was "NED".  She said that after completion of chemo, a regimen of radiation would begin- 5 weeks/5 days a week.  Met with Oncologist again prior to chemo#4, now she is hedging

about radiation; said I should have consult with Radiologist.  I am confused as to whether I should have radiation as the doctor is vascillating about it and also because of side effects.

Can any of you describe your treatment plans and how you have proceeded?  Of course I don't "want" to have radiation; just want best chance of survival.  The literature, much of which is

dated is unclear about how to proceed.  Please help.  ROSE

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Rose, I do not have UPSC but rather MMMT (another aggressive type). I had 28 external beam radiation treatments sandwiched between 6 rounds of chemo. I received a very low-dose of radiation targeted at: 1) the surgical margins, 2) the lymph nodes that are adjacent to the margins and 3) the vaginal cuff.

My rad-onc told me that because of the very low-dose and the specific targeting (3-D CRT), he expected no long-term side effects and only mild short-term ones (so far, he has been proven correct).

Based on that information and the aggressive nature of my diagnosis, I decided that the potential benefits outweighed the potential risks. I have no regrets with this decision. I have been NED since the end of front-line treatment (June 2016).

Everyone needs to make the right decisions for themselves. Wising you peace with whatever you decide. Kim

pinky104
Posts: 574
Joined: Feb 2013

I had stage IVb UPSC in 2010 and had cancer in my uterus, both ovaries, the omentum, and even a little bit on the small intestine.  I was given 6 rounds of Carboplatin and Taxol after having the cancer removed.  No cancer was found in the sampled lymph nodes.  As you can see in another thread on this site, I was found to have high ferritin levels three months after completing chemo, and then had to have phlebotomies to remove some of the blood with the high amounts of ferritin in it.  I was never even offered radiation.  I was under the impression that radiation isn't given when the cancer has spread a lot, as it would damage too large an area. 

In 2014, I complained to my family physician's office about abdominal pain.  My PA ordered a CT of the abdomen which showed a small mass in the paracolic gutter.  I was referred to my GYN/onc. for follow up.  He wasn't sure what it was, but said it was too small to biopsy and too small to try to go in and remove.  He wasn't sure if he would even be able to find it in there.  He ordered another CT at 3 mos., a third at 6 mos., and a fourth at a year.  None showed any growth, so he decided it couldn't be cancer because cancer always grows. 

This year, I had a hemoccult test thru my family physician's office, and blood was found in one of the three stool samples I provided.  That necessitated going to my gastroenterologist for a colonoscopy.  The doctor there found something he'd never seen before. The inside of the colon looked fine, but presssing on the outside of the ascending colon, he found a strange-looking mass.  I actually thought it looked like a pair of testicles. My husband and I joked about how I'd "grown a pair."  I had a PET scan after that and was in the hospital less than a week later having a resection to my colon to remove the cancer before it pressed in so far that it caused a bowel obstruction.  I also had another section of intestine taken out as my small intestine had grown into the mesh I'd had put in for an incisional hernia in 2012.  Then my abdominal wall was "replaced" with new mesh by a general surgeon.  I've been going through chemo since then, which was just finished yesterday.  I'm going to add a separate thread about that.

I'm having a PET scan on 9/29 to see how I've done.  The scan I had July 21 showed the mass to be a third of its size.  My last CA-125 result was 7.9 in late July.  After chemo in 2010, my CA-125's were down in the low 7's and then went down to the 6's for a year or two.  Last June, they were up in the 9's, and in Feb. of this year they were in the 14's.  After that my CA-125 went up 874% in 2-1/2 months, so all the major growing must've been going on then.  I have hemochromatosis, which I suspect probably played a role in the development of this cancer. 

Hope this helps you determine what to do.  I've always been glad that I never had the radiation, in spite of what has happened to me this year.  I've heard about burns to the skin and other complications from it. 

lisewick
Posts: 2
Joined: Oct 2017

hi there. i'll share my experience with radiation. I had 10 sessions of SBRT at UCSF in CA. Only kills the cancerous cells, highly effective for many, much less side effects. In my case, though, it only shrank the tumor by 1/3 so far (which is still great progress). What i didn't realize was that it leaves significant scarring- which makes surgery later very difficult and in my case impossible. So then you're back to medical treatments and alternative approaches. 

EZLiving66's picture
EZLiving66
Posts: 1305
Joined: Oct 2015

I had Stage 2 UPSC and my oncologist did not recommend any radiation after a CT scan showed NED.  I made it through three of the six prescribed and I asked him again about radiation and he said not unless the cancer came back.  

I think there is a lot of debate about how we should be treated especially with the UPSC.

Love,

Eldri

takingcontrol58
Posts: 235
Joined: Jan 2016

Rose,

I agree with Kvdyson that everyone needs to make the right treatment decision for themselves.  I will give you my perspective
from a person who did not  have any radiation.  Personally, I am extremely happy that I did not have any radiation treatment,
since pelvic radiation is a bit more dangerous, as it can cause other issues and cancers.

I was initially diagnosed with Grade 3 endometrioid adenocarcinoma, which is very similar to UPSC.  It is a very aggressive cancer
and likely to recur, just like yours.  My cancer metastasized all over my body two months after surgery, before I started chemo. My only
"standard" cancer treatment was 6 infusions of Taxol/Carbo, one infusion every 3 weeks. You can see from my story above, all the other
things I do.  If you have Stage IV cancer, you have to attack cancer from many directions. Standard cancer treatment is a very small part
of that picture.

Here are some of the things you might want to consider in making your decision-

1) If you are currently NED, ask your doctor why are they recommending radiation?  My guess is that your doctor will tell you it is to kill all
those micrometastases, floating cancer cells in your body.  The reality is that our bodies create about a billion cells each day and about 1% 
can turn into cancer cells.  There is no way that cancer treatment can kill all the cancer cells in our body. That is the job of your immune
system. Though you want your "cancer burden" to be low enough so that the cancer doesn't overwhelm your immune system. But if you
are NED, you don't have a tumor burden.

2) We are told everyday that radiation causes cancer- so how is it that radiation can heal cancer if it causes cancer?  I wish I would have
asked the oncologist this question when he recommended radiation treatment for me. Radiation can cause new gene mutations that can
cause new cancer to form.

Plus radiation is cumlulative- consider all the other radiation you are getting or have had-
CT scans, PET scans, mammograms, chest X rays, the "sun." It all adds up. I don't get CT scans anymore and will only get one if it is absolutely necessary.

3) You might want to consider boosting your immune system through supplementation and an organic diet.   The only way we can all hope to
remain cancer free is to make sure our immune system is in working order. I personally use a group of supplements to boost my immune
system and an organic diet.

4) Did you have genomic testing on your tumor?  I would highly recommend you do so.  Your gene mutations can tell you what caused
you to get cancer, as genes mutate in response to a hostile environment in our bodies- the cells mutate in order to survive.  If you can
determine what caused your body to develop cancer, that is what you need to treat, the root cause of your problem.  You might find that
a more targeted treatment would be appropriate for you rather than just "generic" radiation.

5) Also, I believe once your have radiation to an area, you can't have it again, though I'm not an expert in this. Perhaps you would want
to save this treament option in case you ever might need it in the future.  Why use it when you don't have any cancer?  Give your body
some time to recuperate from all the chemo. Your body might thank you for it.

I have now been in complete remission since August 2015, and I did not have any radiation.  It is now over 3 years since I started my
cancer journey. Once I discovered all that caused my body to develop cancer, I know that radiation would have not done me any good. 
I've targeted the factors that grew my cancer and caused it to metastasize- radiation and chemo don't target anything specific.  

We need to focus on healing our cancer. I read on a natural health site that we shouldn't be fighting a war on cancer, it needs to be a
peacekeeping mission. This is so true.  We need to heal the turmoil in our bodies, not add more poison to our bodies.

 Just some food for thought.

Takingcontrol58

 

MAbound
Posts: 797
Joined: Jun 2016

I didn't have the sandwich treatment like Kim, but I did also have the 3D-CRT method of pelvic radiation followed by a vaginal boost with few side effects. This radiation method focuses the beams to avoid organs like the hip joints, bladder, and colon to the extent possible and seems to minimize the worst of its side effects. I'd look into if that method would be available for you.

I had my radiation after chemo instead of in the middle of it because my gyn-onc felt the radiation has an impact on the blood vessels exposed to radiation and would impede the effectiveness of chemo there where I needed it the most so there's more than one school of thought on when radiation should be given.

Chemo is systemic cancer treatment wherease radiation only treats what it's aimed at and they aim it where recurrences are most likely to occur. Because of your stage and type of cancer, both chemo and radiation are SOP. While you're being told that you are NED now, that just means there's nothing that they can detect with the test(s) you've had, but there can still be microscopic cells that won't show up until later when they've grown larger. The radiation is no guarantee that they'll get everything, but it ups your odds of remaining NED.

Did you have any genetic testing done? Given your stage and type of agressive uterine cancer you have, it seems prudent to keep going to keep this beast at bay and you may want to look into other treatment options you might be suitable for that such testing might reveal. It's good to hear you're already NED and I sure hope you stay that way for many years to come! Smile

 

MAbound
Posts: 797
Joined: Jun 2016

Here's an article that explains the difference that you might find helpful. I agree with Taking Control, the genomic testing might be real helpful, especially if there's a clinical trial it might point you towards.

http://www.cancercenter.com/discussions/blog/what's-the-difference-genetics-vs-genomics/

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Truly inspiring!  So great to hear when someone comes back from a truly challenging place to NED.  Provides hope for everyone else.  Thank you, thank you!! - Helen

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

Thank you for your post. Stage IV age 53 wife and mother. Had 2 surgeries colon and ovaries and on Folfieri now. I love to hear encouraging stories!

XTREME
Posts: 17
Joined: Feb 2018

This thread very helpful.

I have refused Metformin for diabetes and just manage diabetes with diet, chromium, Optimized saffron (LEF), and I love l-Theanine (Pure Encapsulations) (and supposed to with exercise, which I don't do as much as I should), - refused Metformin all the years before I recently got cancer dx and sx, because of its side-effects. Now, I'll discuss with integrative internist and oncologist to see if it might help without chemo; I'd rather take it than chemo.

I cannot take aspirin. And have many more restrictions (allergies, sensitivities, other, such as pepper, bur much more). My stomach absolutely will not tolerate aspirin.

My doctor is integrative. Says my diet is perfect. Approves of my many supplements.

I am willing to try more supplements, some mentioned in this thread, even if I have some reactions to them (I'd put up with that, rather than chemo).

And instead of doing online cancer research, I should be out walking and exercising. No time!

Those of you who take supplements, what do you take?  Can you supplement takers list your supplements?

The best diet/s described in this thread, I already do and have done for decades.

Need to find good massage therapist, skilled, knowing hands, well-trained, in Manhattan.

Thank you.

evolo58
Posts: 293
Joined: Dec 2017

I wonder if extreme stress plays any role in this, too. The last time I was horrendously stressed, it turned out that I had severe hyperthyroidism that nearly killed me. No exaggeration. I have some very stressful family issues going on right now that began before all this happened.

As my late dentist once said, stress doesn't directly cause a health issue, but it can weaken you and make your body more vulnerable to disease. Makes me wonder if yoga, tai chi, mindfulness, meditation, prayer, guided imagery may not be as much as a placebo as some might think. I'm not saying that practicing any of these will create a medical miracle, but the old addage of striving to be healthy in body, mind and soul may have some importance.

saltycandy13
Posts: 167
Joined: Dec 2017

Hey Evolo, I have Graves' Disease which is as you may know is hyperthyroidism.  I am in remission now.  Knock on wood.  Haven't had any since about 4 summers ago.  My endocrinologist told me that yes, stress is a contributing factor to thyroid issues.

Just something extreme like the death of a loved one or being told you have cancer, can send the thyroid into a tail spin.  I try to stay calm, that's why I use Klonopin.

Extreme hyperthyroidism can be deadly.  It elevates the heart and there is weight loss.  I remember only weighing 89 pounds at one point.  People thought I was anorexic and that was hurtful but Graves' disease is no laughing matter.  Not to mention it makes you sweat, and can feel like extreme hot flashes and sometimes even a constant fever.

My medication was Tapazole.  And my next step is RAI (radioactive iodine) when it kicks up again which I am praying it doesn't.

pinky104
Posts: 574
Joined: Feb 2013

I had Grave's disease back in 1994 and took radioactive iodine for it.  I was fine for 3 mos., then I started getting really itchy legs.  It turned out my endocrinologist and my PCP weren't sure how much radioactive iodine to give me and had to guess.  They gave me too much, and the itchy legs were a symptom of the opposite problem, hypothyroidism.  I've been on Levothyroxine ever since then to bring my thyroid level up to the normal range.  My PCP had discussed my case with a surgeon, but he said he didn't know how much of my thyroid to remove, so that would have been a crap shoot, too.  I tried other meds but they made me feel uncomfortable.  Over the years, I've seen at least a couple of other people on this site who took radioactive iodine.  I wondered if the radioactivity had some effect upon our developing our cancers.  I was told back then that the drug was safe, but those were like the Dark Ages for pharmaceuticals.

I fully believe that stress causes cancer.  I worked at a stressful job and developed my cancer shortly after dealing with a mean boss.  My mother got breast cancer twice.  The second time was when she had to evict my brother and his nasty wife from her home.  A few months later she had a recurrence of her breast cancer after being in remission for almost 10 years.  I've run into a few other people on this site who developed their cancer after being under a lot of stress.  Look at the old threads from Debra Jo, for example.  I'm sure dealing with her ex-husband was very stressful to her (being divorced and living in the same house with her ex wasn't the ideal situation). 

saltycandy13
Posts: 167
Joined: Dec 2017

The RAI did sound dangerous to me but that was before the uterine cancer thing.  My other option is thyroidectomy.  No body wants their throat cut but it could be safer.  What's a little scar?  There is a doctor in Cleveland Clinic that developed a new way.  He goes through the armpit.  I might opt for that when and if the time comes.

They also say stress ages you.  If that was the case, I should be 150 years old after living with my husband!  LOL

evolo58
Posts: 293
Joined: Dec 2017

I've been nuked as well, and am now hypothryoid. I probably would have gone for surgery, but I had young children at home, my husband was working out of state and I didn't have a whole lot of backup that first week or two, and the recovery time from a surgery would have taken too long. I needed to be back in the swing of things ASAP.

In all fairness, I knew of several women who had RAI and did not develop cancer at all. But then again, I remember when serious menstrual bleeding wasn't taken nearly as seriously, and the trend was to try keeping your uterus if possible. (Still is kicking herself for that!) Medical opinions can change. Maybe the women I knew were lucky. You never know when someone is going to say, "_________ caused your cancer" 40, 50, 75 or more years later. Always a great thing to find out.

I believe that stress will ... I'm probably not explaining this well ... find a weak area in your body and wreak havoc on that weakness. That was what my dentist said (may he rest in peace), and I still agree with him.

barnyardgal
Posts: 187
Joined: Oct 2017

Interesting about the thyroid. I test as hyperthyroid but I don't have any symptoms. My tsh, free t4, etc have gone up since surgery but are still low. My gynecologist-oncologist said there is a correlation between the thyroid and endometrial cancer but it's not fully understood yet.  I have a very small nodule on my thyroid but since I have no symptoms, and I'm still going thru chemo, the drs are taking a wait and see approach at this point. My endocrinologist said both the RAI and surgery have a 60-70% chance of not taking out the thyroid so it seems like odds are the same for both. 

Deb17
Posts: 14
Joined: Feb 2018

your article lifted my spirits.  I’m on my second round of chemo after taxol/carbs took my CA-125 went down to 7 but shot up again 3 months late.  I saw a specialist at the University of Chicago and she didn’t give me much hope.  I’m now on doxil.  How do you find out what supplements to take?  I’m becoming desperate and very scared.  Thank you.

takingcontrol58
Posts: 235
Joined: Jan 2016

I strongly believe that integrative cancer treatment is the only way to permanently put advanced
or metastatic cancer in remission. Unfortunately, the standard cancer industry does not believe in this.
They only believe in official cancer treatments.

First thing I would say is that no doctor can predict if we live or die.  That is in God's hands.  I definitely
wouldn't work with a doctor that doesn't give you hope for the future.  They have no idea.  If they are
saying there is no hope, it is clear that they have never healed a cancer patient with metastatic cancer.
Dr. Gaynor, who I mention above, was well known for treating  patients who were told by top cancer
hospitals in NYC that they could not do anything for them but he was able to heal them.  There was a
woman who had pancreatic cancer that was such a women that I met in his office during my first visit.
I believe she was written up in Newsweek many years ago- I'll try to  find that article.

Each patient needs to address the issues in their own bodies.  From a supplement perspective, I would recommend
you have your doctor (internist) do a full panel of vitamin, minerals and metals testing to see what you need. In Dr.
Gaynor's last book "The Gene Therapy Plan" he lists all the supplements he gave to every cancer patient-
with the caveat that certain suplments may be more important than others for a given individual.
I would suggest you try to find a naturopath or integrative oncologist who can put you on all the 
supplements that would be appropriate for you.  I'm on about 45 right now, though some I've added
over the years to keep other parts of my body healthy.

Here is the list of supplements- I take all of them except artichoke extract and bee propolis

D-limonene
Magnolia extract
DIM 
Maitake D fraction (best to boost the immune system)
Shitake extract (boosts immune system)
Chaga mushroom (boosts immune system)
Oil of Oregano (antibacterial)
Vitamin D3 (many cancer patients are low in this)
Skullcap
Black cumin seed oil
Bee Propolis
Artichoke extract

I also highly recommend Curcurmin (from Turmeric) and bosswelia and anti-inflammatory.
I also us Vita PQQ which targets the mitochondria- the powerhouse of our cells- you want
your mitochondria working perfectly.  I also take supplements for my liver (many cancer
patients have compromised livers- all the toxins in our body go through the liver so it needs
to be in working order - also the liver is the key site of metastasis- I had metastases in my liver)

I would also recommend you speak with your doctor about getting on metformin now, while
you are getting chemo.  The sooner the better. Since you read my story above, I originally
entered a trial (that is still ongoing, ends in Sep 2019) that added metformin or a placebo
to the Taxol/Carbo. They are testing for certain mutations of the PI3K pathway, which is
mutated in over 80% of all endometrial cancers. It regulates energy production and insulin.
I had one of those mutations.  There is no reason to wait for the results of the trial when
you need help now- that is why I pulled out of the trial after one month and Dr. Gaynor put
me on the drug -because I needed to be on the drug for my insulin resistance and metabolic
syndrome, key causes of endometrial cancer.

The problem with only using cancer treatment is that it is designed to kill a tumor or cancer cells.
It doesn't address what makes new cells turn cancerous in the first place.  I believe the chemo
helped kill the many tumors I had after surgery (though I still had 2cm left after chemo) but it
is the metformin and all the other things I am doing that are keeping me cancer free. Think of
it this way- you have to treat cancer on the front end and the back end.  Just killing a tumor
does not stop new cancer cells from forming.  That is why you have to determine what is making
cancer grow in your body and treat those conditions.

I'll be happy to go into more detail with you if your would like.  You can e-mail me if you have more specific
questions.

Takingcontrol58

 

 

 

 

Deb17
Posts: 14
Joined: Feb 2018

thank you so much for all this informatio.  I‘ve Just been feeling like there’s just not much hope for me, that’s why your story helps.  Can I get these supplements on line.

takingcontrol58
Posts: 235
Joined: Jan 2016

I purchase most of the supplements I use from a pharmacy in NYC. They ship me the supplements.
The pharmacist worked with Dr. Gaynor (my first integrative oncologist who passed away) and works
with my current integrative oncologist.

Let me know if you would like the name and number.  Some supplements I purchase online
at a website called vitacost.com.  But most of the ones I mention above I purchase through
the pharmacy. Some of the more unusual ones find I have to purchase through the pharmacy.
But I do purchase the DIM, Vitamin D, Vitamin B12, Maitake D fraction and they sell
the Blackseed cumin oil on the vitacost site. 

Takingcontrol58 

Marchase
Posts: 1
Joined: Jan 2018

I was diagnosed with Graves’ Disease in 1999, and chose the radioactive iodine route. I now have hypothyroidism and take levothyroxine, two different doasages alternating. Mid-October of last year I started spotting. (8 years psot menopause.). Called the doctor the next morning, and had an u/s two days later. Less than an hour after the u/s, they called me and told me I needed a biopsy because of thickened lining. At that point, they were telling me I couldn’t be seen for a biopsy until mid-December.  I protested, mightily, and said I couldn’t wait that long. They got me in the following week and on November 10th, was told I had cancer.  I was referred to a gyn-onc at the UW Carbone Center.  December 13 Complete hysterectomy, including lymph nodes, tubes and ovaries.  Stage 1a, Grade 3. I’ve since completed two rounds of Taxol/carbo, and have 4 more to go plus radiation.  It will be interesting to see what the future holds for research with thyroid issues and cancer.  Stay strong, one day at a time!  We are warriors!!!!

Marcia 

bluedaisy
Posts: 3
Joined: Jun 2017

Any advice to help lower the amount of sugar I consume?  I have been trying all my life.  The times I did I NEVER quit craving it.  I tried Atkins for a while.  Also wondering how you are doing.  I am also stage 4 and it went into my omentum.

takingcontrol58
Posts: 235
Joined: Jan 2016

I am doing great and thank you so much for asking. It takes work to stay cancer free
so I continue to follow my comprehensive cancer treatment plan every day (which
includes no cancer drugs).

Start eating less and less sugar every day.  I try to follow the standard guidelines for a woman-
24grams of sugar a day- that is 6 teaspoons.  Sugar is in everything.  Read food labels.
What we crave is all in our minds.  Over time, you will find that you have less of a craving.

For me, when it was believed I might only have 4-6 months, I had to make a decision.  It was
a big turning point.  I knew my bad habits and had to change them if I was going to live.  I think
that is really how we heal our cancer. You can't just get chemo or radiation and continue on
living the same lifestyle that got you to a cancerous state.

After my hysterectomy, which was right before Thanksgiving, I continued to gorge on sugary
treats.  I used to eat a large bowl of ice cream every night with hot fudge and whipped cream.
It was the holidays, so I was eating even more sugary treats- cookies, candies, pies, etc.
Then I had a CT scan in January and my cancer had metastasized all over my body.
Then I knew I had to stop the sugar.  Now when I look at some of the same foods I used
to eat (Oreos, M&Ms. milk chocolate), i think of them as poison. I can't believe that I don't
even like ice cream that much any more when it was my favorite sweet. I decided I was going to
live and cutting out sugar was one of the things that I trully believe led to some of the
health issues I had.  That's why I say it is in the mind. Our mind controls what we do.

Sugar (glucose) plays a big role in cancer.  It is the basis of how a PET scan identifies cancer.
Look up Otto Warburg- he was a famous researcher and won Nobel Peace prizes back in the
1930s on his discoveries of glucose and cancer. They have known the connection for almost 90
years.

Now I do eat a small dessert each night, which is usually dark chocolate (70% cacao or higher)
and an apple. I never ate apples in my life. I guess it is true- "an apple a day keeps the doctor away."
I do eat a few cookies every now and then but when I look back at the amount off sugar I was ingesting,
I am amazed at how little i consume now.

If you think eating sugar has been a contribution to your cancer, you just have to change your habits.

I do eat alot of fruit (I make a daily smoothie of fruits and vegetables with certain supplements
every day).  I have been drinking this smoothie for 3 years now.  I never ate enough fruit and
vegetables in the past but i do now.  It is best to get your sugar from fruits vs. processed sweets.

Takingcontrol58

 

 

 

 

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