Looking for stage IV survivors?

Dear Darla - please don't read statistics, you are a statistic of ONE.  I am betting there is no 'expiration' date stamped on the bottom of your foot - so go with your surgeon.  As for the chemo, that sounds like what almost all of the ladies here went with (some also had radiatiion and we talk about that a lot on some of the threads)

You are not alone and will be welcomed with open arms here.  Please don't hesitate to ask any question, the women here are pretty awesome.

Also, since your doctor seems pretty open to things, see if he is interested in you participating in this clinical trial:

https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?q=endometrial&loc=0&rl=1&id=NCI-2013-02284&pn=1&ni=10

I am, too. I will raise (still another) bottle of water in your honor if you do. Really hoping this is fantastic news, and you can rest a little.

You're not alone.  I was first diagnosed with UPSC (high grade serous adenocarcinoma, like yours) in the spring of 2010.  I had surgery and six rounds of Carboplatin and Taxol, which I finished in Sept., 2010.  I had some pain in 2014, and a mass was found in me that was too small to biopsy.  My GYN/onc watched it for a year with CT scans and a PET scan and decided that since it hadn't grown, it couldn't be cancer.  Well, this year it grew rapidly, wrapped itself around my ascending colon, and I had surgery and chemo again.  I started out with Carboplatin and Gemzar the first week, then did Gemzar alone the second week, and had the third week off, except for labs.  I had to have some of my chemo postponed because of low white blood cells, platelets, or hemoglobin, and on some visits I had to have lower doses.  On my next to last round, I had an allergic reaction to Carboplatin (the 11th time I had it over the years) and had to switch to Cisplatin and Gemzar in my final round.  I am again in remission.  My GYN/onc said I'd be lucky to have another 5 year remission, although the last one was almost 7 years.  I'm now trying Turmeric/Curcumin and taking Metformin although I am not a diabetic.  I was found to have 6 mutations in genomic testing done by Foundation One on the tissue that was taken out of me the last time I had surgery.  A member of this board, who knows a lot about mutations from reading medical journals, TakingControl58, told me that Metformin would work on 4 of them.  My PA at my family doctor was familiar with some of the studies on Metformin and agreed to let me try it.  I started it last week.  I hope it will keep me from having another recurrence or at least prolong the time until I get one again.  I'm one of the lucky ones who doesn't have a lot of symptoms when I get cancer so it tends to sneak up on me, but so far at least, I respond well to treatment.  We're all a bit terrified when we start out on this journey, but don't panic. You may get through it relatively easily. Not that it's all easy, but I expected so many more problems than I had.  Ask your doctor to give you Emend so you don't get nauseous, and that's a big part of the battle.   There are a number of stage IV survivors on this website. Good luck to you. 

Darla's mom,

I was staged with Stage 3, Grade 3 endometrioid adenocarcinoma in November 2014, after my hysterectomy. Two
months later, cancer metastasized all over my body (liver, spleen, vaginal cuff/outer rectum, nodules on lungs,
outer colon and spleen). This was before I was to start treatment. My husband was told I had 4-6 months to live.
You can read my entire story posted on January 10, 2016 (NED from Stage IV metatastic endometrial cancer).

I entered the trial "No time for cancer" mentions, a placebo or metformin with Taxol/Carbo- I had two chemo
infusions of Taxol/Carbo and met with my integrative oncologist-he immediately put me on metformin and I
removed myself from the trial.  Defintely talk to your doctor about getting on the drug. You don't need to be in
a trial to get on this drug and being Stage IV, you don't have time to lose. It is a miracle drug if 
you have the right gene mutations and health conditions that it targets. After one month, I went
from 34cm of tumors to 4cm. 5 months later I was completely cancer free and have been so ever since. It has now
been over 3 years. I remain on metformin today. Also, I never had any radiation treatment, just six infusions of
Taxol/Carbo. When I finished the chemo, I still had 2cm of tumors remaining, which vanished a few months later.

I highly recommend the first thing you do is have your surgeon send a tumor specimen to Foundation One for genomic
testing. It is good to do this when you are first diagnosed as cancer treatment mutates our genes and can cause new
mutations. It is so important to understand what is driving your cancer-  As you can see from Pinky's post it turned out that
metformin targeted 4 of her 6 mutations.  Metformin targets many of the mutations and health conditions that lead to endometrial
cancer. If you have mutations that metformin targets, you might be one of the lucky ones.  Metformin targeted 3 of my 4
mutations and I have remained in complete remission from a death sentence.  I'd be happy to analyze your genomic
testing report when you receive it. I have been researching this cancer for over 3 years now.

I also remain on 45 supplements that I began 2 1/2 years ago.  They were all recommended by my integrative oncologist.
A good book to get you started is called "Natural Strategies for Cancer Patients" by Russell Blaylock.  You will learn alot about
supplements and cancer treatment.  I started on DHA (fish oil) before starting the chemo- it is supposed to help prevent side
effects from the Taxol.  I never had any major side effects. You can also read the book published by my integrative oncologist
called "The Gene Therapy Plan" by Mitchell Gaynor.

I'll be happy to let you know the supplements I use but you should work with your own naturopath or integrative oncologist
to make sure you get the vitamins and supplements your body needs. Dr. Gaynor's book lists the key supplements he 
recommended for his patients with cancer- I'm on all of them but two.

You also need to be checking certain blood markers.  Vitamin D is critical and if you take metformin, you will need to
supplement with Vitamin B12, as it can lower levels of this important vitamin. Can you let me know any health issues you have?
This is what you have to focus on. All the things that led to your cancer- underlying health issues, gene mutations, diet, weight.
You have to work on getting your body back into balance. Focusing on a healthy, organic diet is one of the first things I did when
my cancer metastasized- organic fruits and vegetables and grass fed beef and organic chicken. Think clean food and purified water. 

I would also recommend you talk to your doctor about taking two low dose aspirins /day.  Aspirin reduces your chance of any
cancer by 25%.  I have also been taking two low dose aspirins along with the metformin.

You have to take control of your own health if you hope to survive advanced or metastatic cancer. You have to do
your own research. I can give you a list of many good web sites, some on integrative health and some from the standard
medical community. The best website is the site of the National Institutes of Health - www.pubmed.gov. This is where
they publish all the medical journal articles.  Doctors use this site only I don't think most of them really do all their homework.

Also, I don't believe you can ever cure cancer.  You have to heal cancer.  If you body becomes conducive for cancer to
grow, it will return, just like when we get a cold or the flu. You are never cured, but when your body gets run
down again, you get another cold. And your body heals again.  It is our own body that keeps us free of all diseases.
But it has to be in working order to do so. 

If you have alot more questions, you can e-mail me.

Takingcontrol58

Cancer does not mutate your genes.  Your genes mutate in response to hostile conditions in
your body caused by all types of things, like chronic inflammation, excess metals in your system,
dangerous chemicals (remember the movie Erin Brockovich?), too much of key hormones
(like estrogen and insulin growth factor) which are not in proper balance, too much glucose or
insulin and many other things. It is these gene mutations that can lead to cancer. I've read that
people with cancer typically have between 4-10 mutations. Or perhaps you are deficient in certain
vitamins and minerals so some of your internal body processes are not working properly.  We have to
have all the proper cellular building blocks. For example, being low in Vitamin D is usually found in many
patients with cancer. Vitamin D is involved in over 200 processes in our bodies, so if you are deficient,
things can go wrong. It is all about balance.  When your body is out of balance, problems happen. 

Cells mutate to survive. Only 5-10% of mutations are inherited. The rest are somatic which are changes
that happen over the course of your life due to your lifestyle and environment.

I believe it is key to do genomic testing with your original tumor specimen so you can better
understand all that is driving your cancer right from the start, especially if you are diagnosed with
advanced or metastatic cancer. But this is not the standard practice in the industry.  I had to ask my
surgeon to send in my tumor for testing. You need to address your gene mutations and your underlying
health issues, which could be driving the gene mutations. I believe this is how you heal cancer. Once
you know your mutations, you'll have a better idea of what is going on.

You have to determine the root cause of your own cancer.  There might be a targeted therapy you want
to try for example. I went on metformin which happens to target genes mutated in endometrial cancer,
though it is not considered a cancer drug. For me, it targeted the conditions that led to my cancer as
well as some of my gene mutations.  A supplement addressed another key driver of my cancer.
Perhaps you need to be on drug that targets your hormone levels, for example. You have to address
all that is driving your cancer, and chemo and radiation don't do that.  They are
just generic poisons that destroy everything in their paths, the healthy cells and the cancer cells and deplete
your body of all the nutrients it needs.  That is why supplementation is so important, so you replenish all the 
goodnutrients that are being washed away or destroyed. We all know the damage from these treatments because
of all the side effects.

Once you have chemo and radiation,  it is possible that your mutations may have changed or you have new ones,
because many chemotherapies and radiation work by mutating your genes, of both healthy and cancer cells.  This is how the
cancer cells supposedly die. These treatments don't just target cancer cells. We all know radiation causes cancer
and many chemotherapies are known carcinogens and cause new cancers. That is why if you have a recurrence,
you would have to do testing on the new tumor to see if the mutations are the same as the original tumor because
then your treatment might change.
 

Takingcontrol58

Darla's Mom said:

Wealth of information

TakingControl58 -  Your post gave me hope and terrified me at the same time. I had no idea this was so agressive. My chemo has been delayed due to my incision opening after they pulled the staples. How far has this spread while we are all waiting for my wound to heal?

I have a new medical oncologist I am meeting with on Monday and will ask to be put on metformin and low dose asprin. At this point, any potential effects from the metformin are greatly dimished by the potential for effectiveness with chemo. The surgeon is located in the same building and I will visit their office to discuss sending out a sample of the tumor to the Foundation One for genomic testing (if they still have it). Surgery was almoost 2 months ago.

My diet and weight are likely contributing factors. Lymphoma is the only family history of cancer. Up until the cancer/tumor diagnosis, I have had no health issues in my 53 years.

I would appreciate any informaton on supplements and any additonal links that you can provide.

Thank you so much for responding to my inquiry. 

I'm glad my post gave you hope- I didn't mean to terrify you.  But the best advice I can give to a cancer
patient is to take control of your health from the day of your cancer diagnosis.  And it looks like you are doing that.
I think it's important not to be rushed into treatment without understanding your options and all the risks
involved. You do have a choice.  You don't have to get all the treatments that are recommended for you: I didn't
take many of the treatments recommended for me. Also, I believe they say the ideal is to start chemo no longer than
eight or nine weeks after surgery.  

You mention your diet and weight are likely contributors. That was the case with me. Once my cancer
metastasized, I radically changed my diet and the weight started to come off. If you know that is an issue,
I would focus on this ASAP. This could help you more than anything if you think it may have led to your cancer.
Maintaining a healthy weight is one of the best things women can do to prevent a cancer recurrence.

I think we all know our own bad habits. A bad diet leads to excess weight whichleads to many conditions that can lead to EC. 
I would start on the metformin as soon as you can. What women aren't being told is that chemotherapy activates many of the
processes that can cause cancer and metformin targets these processes- like angiogenesis (creation of new blood vessels that
cause new tumors and metastasis) and the creation of cancer stem cells (which is why people become chemo resistant).
It is believed the chemo kills the daughter cells but leaves the cancer stem cells that go on to form new cancer. 
Metformin also targets cancer stem cells.

You didn't mention that you have diabetes- are you pre-diabetic or do you have insulin resistance?  If weight is an issue, is the
weight around your stomach? Have you had blood tested for insulin, insulin growth factor hormone, glucose and A1C? These are
all usually related to excess weight.  I had issues with all of them and metformin lowers all levels.  I also had very high cholesterol
which has come down about 70 points on the metformin.  As I've said in other posts, you have to determine the root causes of your
own cancer and treat those health issues. I would also test for ferritin (stored iron levels) which go up for women in menopause.
My were very high and I believe was the reason I was diagnosed with a Grade 3 cancer, very fast growing. I also test my hormone
levels regularly.

The doctor that brought me to remission died right before I was NED.  His last book, The Gene Therapy Plan, (by Dr. Mitchell
Gaynor), he lists the supplements he gave to his cancer patients.  I will list them below, but as he states, certain supplements
may be more important than others for a given individual.  That is why I would suggest you meet with a naturopath or find an ntegrative oncologist who is also an expert
in standard cancer treatment and completmentary treatment.  Here are the supplements my doctor recommended for his cancer patients:

Artichoke extract
D-limone
Magnolia extract
DIM
Maitake D Fraction
Shitake mushroom
Chaga Mushroom
Oil of Oregano
Vitamin D3
Skullcap
Balckseed (black cumin seed oil)
Bee propolis

I use all of these supplements except bee propolis and artichoke extract.
I would also recommend Bosswelia (Frankencense) and Curcurmin. Ginger is in the 
same family and is also a cancer killer.  I use that as well. Curcurmin targets some of the things metformin
does.
I also use Alpha Lipoic Acid which can prevent neuropathy, so you may want to use before you start chemo.
It helps raise the levels of glutathione in your body, the master anti-oxidant.

Some good web sites for integrative/natural medicine:
www.lef.org (the site where I first learned about metformin- excellent to learn about many health issues)
I learned about this site in Suzanne Somer's book Knockout, which is excellent. It got me on the road to
integrative cancer treatment.
www.mercola.com
www.thetruthaboutcancer
www.naturalnews.com

Some good web sites from the medical community:
www.pubmed.gov
www.statnews.com
www.medicalnewstoday.com
www.oncologynurseadvisor.com

It is important to read multiple sites to get a good idea of all perspectives.
You can also go directly to the websites of some of the cancer hospitals.

I too had no health issues before I was diagnosed at 58.  But it turns out I did have health issues-
high insulin, IGF-1, ferritin, that doctors were not testing me for.  You don't know what you don't
know, that it why blood testing is so important.  When you get cancer, you are not healthy.  I thought
I was healthy- I never got sick, but it turns out I had high levels of the things that cause cancer. At 
this point, I'm healthier than I have ever been.

Takingcontrol58

Darla's Mom said:

Enlightened - no longer terrified

I can't thank you enough for this.

You gave me information that someone at my surgeon's office should have given me.  I am now enlightened.

I spoke with the new oncologist yesterday about putting me on metformin. She told me she would consider it and has since agreed.  At statge 4, there are no adverse reactions that would be worse  than the chemo and the oppotunity for improved response to chemo greatly outweighs any potential side effects. 

I will be going for a CT scan tomorrow. I pray the last 8 weeks have not allowed the cancer to grow. After my surgery, there was NED.

 

Good luck with your CT scan. I am glad you are getting on the metformin when you start the chemo.

As long as you start addressing some of your own health concerns, and start healing your body, I think
you go a long way towards keeping cancer away. I think the key is attacking all the issues that led 
to your cancer - that is how you defeat cancer.  You have to come at it from many directions-isn't that
how you actually win a war? You don't just use one battle strategy but come at the enemy from many
directions?  Air, sea, land?  I think you need to do the same with cancer. Standard cancer treatment is
not enough when you have advanced or metastatic cancer.

Also, I only had 6 infusions of the Taxol/Carbo- I had no radiation and am happy I was able to avoid
that treatment.  It was cancelled once my cancer metastasized. Once I had tumors to target, they
pulled the radiation. 

Have faith in your self. I decided I was going to live despite what the top cancer hospital in the country
told me. They obviously don't know everything.

Takingcontrol58