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Six years, still NED from metastatic EC

takingcontrol58
Posts: 263
Joined: Jan 2016

 

It’s been awhile since I last posted, but wanted to let you know that I am still here and it is now six years
since I was diagnosed with advanced, then metastatic endometrial cancer, and I’ve been NED for over
five of those years.  It is hard to believe it has been six years already.

 

Congratulations to all who have recently posted about their anniversaries and success in being
cancer-free (Cheerful -9 ½ years, EZLiving-5 years, Christine8822-5 years, Cmb-3 years, Armywife-3
years). I hope I didn’t miss anyone.

 

I am posting because I wish to give others hope and let women know that you can survive metastatic endometrial cancer and
become cancer-free. I was diagnosed at Stage 3b, Grade 3 endometrioid adenocarcinoma, which metastasized two months after
my hysterectomy before chemo, to my liver, spleen, vaginal cuff/outer rectum plus had nodules in my lungs, spleen and outer colon.
I had an extremely aggressive, fast growing cancer but was completely cancer-free seven months from my diagnosis of metastasis.
According to the medical literature, the average survival for metastatic endometrial cancer is twelve months. So to all those newly
diagnosed, do not listen to what they say.  Doctors just don’t know who will survive and who won’t.

 

My last chemo was in May 2015 (I had six infusions of Taxol/Carboplatin, no radiation and no other cancer treatments,
(though others were recommended when I metastasized). I used an integrative oncology approach and followed a
comprehensive cancer healing plan that included lifestyle changes, non-cancer drugs (metformin, low dose aspirin, doxycycline)
and about fifty supplements daily.  I continue to follow the same plan to this very day.

 

As I’ve posted in the past, I personally believe the key to healing cancer is to address the underlying root causes of your cancer,
the health issues that led to your cancer. It is about getting back to healthy. You have to heal your body to heal your cancer.
They say cancer has no need to grow in a healthy body.  For those ladies recently diagnosed, my key advice is to lose your fear,
take control and get educated about cancer. Knowledge is power.

Takingcontrol58

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

on your wonderful news.  And thank you for coming back to share that news.  Its a particularly good time, since we have some new members dealing with new new diagnosis, or waiting for biopsy results.   May it continue forever.   Your story is amazing.  

Maxster
Posts: 70
Joined: Apr 2020

I am always inspired and my spirits. uplifted when I read posts such as yours.  Thank you for sharing your story.  It gives me great hope.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1772
Joined: Jun 2015

So good to see you again, Takingcontrol! Many of us refer newbies to your bio when questions come up that you have addressed.

Congrats on your continued dance with NED. Thanks very much for coming back to celebrate with us and give everyone hope.

Love and Hugs,

Cindi

Theskinnyscot's picture
Theskinnyscot
Posts: 33
Joined: Dec 2019

Thank you for coming to tell us your fantastic news. I hope we can all follow in your footsteps. Good news is so appreciated in these strange times. 😎

Fridays Child
Posts: 210
Joined: Jul 2019

So encouraging to hear your story!

Yeo's picture
Yeo
Posts: 27
Joined: Nov 2019

Thank you for sharing your wonderful news!  Your words of encouragement are appreciated.

cmb's picture
cmb
Posts: 674
Joined: Jan 2018

I'm so glad you checked back in with us to share this great news! It's very encouraging for others dealing with their own challenging cases to hear about your achievement.

For our newer members, be sure to read takigconrol58's profile where she summarizes many of the actions she's taken to reach this wonderful milestone.

MAbound
Posts: 1115
Joined: Jun 2016

Glad to hear everything is still looking good for you! Smile Your story and advice never gets old.

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

What a fantastic story.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

I was just thinking about you the other day, and am so glad you came back to encourage us all.  I have yet to make any of the lifestyle changes that you made, and you've encouraged me to get busy on it!

oldbeauty
Posts: 303
Joined: May 2012

Takingcontrol, thanks for stopping by to shout out to us oldtimers and newbies alike that there is always a reason to focus on being a statistic of one, and to participating fully in the approach to treating and living with our individual disease.

I myself am a 3-timer fighter over 15 years with the possibility that a fourth skirmish is ahead.  I thank you for your educating us about Metformin, which I've been taking for 3 years since my 2017 chemo treatment.  I also have embraced integrative treatment for my general health and fight to reclaim mobility after suffering severe neuropathy.  While my functional medicine specialist is relatively new to the practice (now seeking board certification after practicing osteopathetically for many years), he has a previous career as a chemical engineer and is so enthusuastic about helping me support my immune system and healthy mitochondria for optimal cell energy.  He gives generously of his time and has already uncovered deficiencies that bear further analysis.

I don't know that it is always possible to identify the root cause of cause of one's cancer, but I do wholeheartedly agree that a cancer diagnosis should be a wake up call to determine what can plausibly be done to adjust health and well-being issues that likely can have a profound effect on one's ability to beat back this disease.  My diet is improved, and I no longer am a sedentary person.  

Best wishes to you in your health and vitality in living the good fight.  Oldbeauty

Frances081920
Posts: 26
Joined: Aug 2020

Hello oldbeauty, my goodness a 15 year 3-time fighter and possibly another. May I ask what type(s) of cancer you had and what is your current concern? You are an inspiration to all of us in this group.

oldbeauty
Posts: 303
Joined: May 2012

Hello Frances.  I was staged in 2005 with (then) Stage 1C, Grade 2 endometrioid adenocarcinoma.  Hysterectomy and external beam radiation followed.  Declared "cured."  Recurred in 2012 with right para-aortic node positive with biopsy and suspicious lesions scattered in both lungs (not biopsied).  Radiation and "palliative" care with high dose progesterone followed.  Told I'd probably expire within the year.  Recurred again with lesions in lungs in 2016 (not biopsied).  Spent most of 2017 doing 12 rounds of chemo.  Doc expected me to recur again in shorter period of time than before.  Since December 2018 we've been following a slowly growing single pulmonary nodule. It may have reached a size susceptible to biopsy by now (or maybe (I hope) it's stopped growing).  CT scheduled for next week.  Following this board for many years has helped me control panic.  I feel confident that this cancer provides time to not just jump on treatment without going for second opinion.  Now, my plan is not to jump to any conclusions; wait for the thing to get to biopsy stage and then get rigorous pathology.  I've had no "modern" tissue analysis since 2005, and I want that now.  So, we'll see.  I want to know as much as possible about these cells and then we'll pursue treatment.  My preference is for surgery over more chemo.  To be continued....  Best wishes, Oldbeauty

Fridays Child
Posts: 210
Joined: Jul 2019

Oldbeauty, like you I had ordinary endometriod adenocarcinoma, only I was Stage 1a, Grade 1.  Hysterectomy and brachytherapy.  6 years later I was found to have a pelvic mass that invaded the hip joint, as well as several mets in both lungs.  Lung mets not biopsied.  Chemo and radiation this time.   Some lung mets have disappeared, others shrunk. Pelvic mass has shrunk but isn't gone, so I'm managed as chronically metastatic, aking Megace.

My radiation oncologist said if I were to have further problems with the lung mets that they could do targeted radiation to them.  Hoping it won't come to that.

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Kaleena
Posts: 2064
Joined: Nov 2009

Hi Frances:

I am also a 15 year survivor of Grade 2, Stage 3A Endometrial Adenocarcinoma.  They were unable to determine a primary.  It was either Endometrial Adenocarcinoma or MMMT.  They decided to go with Endometrial but treat it as Ovarian.    I have had two recurrences.  I have also had ureter bypass surgery.  From HDR Brachytherapy it caused scarring on my left ureter to my bladder.  Gallbladder removal surgery.  My recent surgery in 2018 I had part of my rectum removed and large bowel and also part of my small intestine because my mesh infiltrated it from my 2010 surgery.  That caused me to have an ileostomy for several months.  My most recent surgery also found cancer in two lymph nodes and a micro spot in the vaginal cuff.  I did not do any treatment because they removed those things.

Old Beauty and I go way back!

Frances081920
Posts: 26
Joined: Aug 2020

Wow you are amazing, what a fighter. Do you take any supplements or alternative treatments? Thanks for all the info, I appreciate any information you are able to give me, as I am currently undergoing chemo and will start brachytherapy/radiation on 11/02/20. I had total hysterectomy, ovaries and tubes and omentectomy with lymph node biopsy. Mine is papillary serous stage 2, grade 3 tumor, very aggressive so I am likely to have recurrence. I am hopeful but fearful for the future.

Frances

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Kaleena
Posts: 2064
Joined: Nov 2009

Oh thats right, they did remove my omentum and also my appendix as they said those are places for recurrences.

Lymph node removal (25 first surgery) (11 second major surgery - 1 micro positive) (15 third major surgery - 2 positive)

 

I have low B-12 and D so I take those supplements.

(((Hugs)))

 

Kathy

MelissaJA's picture
MelissaJA
Posts: 24
Joined: Oct 2020

Thank you for sharing your wonderful news!  It's spreads hope!

Frances081920
Posts: 26
Joined: Aug 2020

Hi takingcontrol, your story is amazing, I wonder if you would mind sharing which supplements you take?

takingcontrol58
Posts: 263
Joined: Jan 2016

Frances,

Since I use alot of supplements, I will not list them all, as many are tied to various other processes tied to good health.
For example, I take iodine because I have dense breast tissue and a large thyroid nodule -low iodine is tied to these conditions.

I will group them by what they are best known for - it is important to target your underlying health issues or vitamin and mineral deficiences
along with the processes that are involved in cancer formation.  All these supplements do many things- you can look them up to see how
they address many of the processes involved in cancer formation.  Since there are no cancer drugs that target many of the most important
processes involved in cancer formation, you can target these processes with supplements, food and non-cancer drugs.

Immune System -it is key to maintain a strong immune system to fight all health issues, not just cancer
Maitake D fraction
Shitake
Chaga
Coriolus PSP (Turkey Tail)
These are medicinal mushrooms and are well known for supporting the immune system.

Vitamin D- vital in maintaining a healthy immune system

Anti-bacterial/anti-viral - 20% of all cancers are caused by viruses and bacteria which get into cells and cause mutations
Oil of Oregano
Olive Leaf Complex
Aged Garlic
Skullcap

Mitochondrial Support- where cell energy and DNA is created
Vita PQQ
L Carnosine

Liver Support- the most important organ in the body (filters all toxins) and the most popular site of metastasis
Alpha Lipoic Acid
Rosemary
Curcumin (is also an antibacterial)

Inflammation - one of the key drivers of cancer and heart disease
Bosswellia (frankencense)
Low Dose Aspirin
Curcumin
Ginger
Dilimonene

Some key supplements for targeing processes involved in cancer
Magnolia (Honokiol)
DIM
Kanchanar Guggulu- targets the lymph system to help eliminate toxins
Black cumin seed oil

I also use Vitamin B12 as metformin keeps your body from absorbing the vitamin, so you have to supplement.

I also make a smoothie nearly every day, that was recommended by my integrative oncologist when I first metastasized>.
I've been drinking it ever since. Besides healthy fruits (mostly berries) and vegetables, I add:
Black raspberry powder- best anti-cancer fruit
Liquid anthocyanins (liquid resveratrol)
wheatgrass powder
beet powder
MCT oil (form of coconut oil)
flax seeds
dried apple peel powder
red/green powder comprised of fruits/vegetables

Alot of these ingredients are anti-oxidants- oxidation is what causes damage in our cells so you need to
use anti-oxidants to help counter the damage. Consider this another important category to keep yourself healthy.

Again, this is all about keeping my body healthy and my internal systems working properly, so disease doesn't need
to form, whether it is cancer or covid.  I also eat an organic diet.

If you have any other questions, you can send me an email.

Takingcontrol58

 

Frances081920
Posts: 26
Joined: Aug 2020

Thank you takingcontrol for this wonderful information. God bless and keep you in continued good health.

MoeKay
Posts: 330
Joined: Feb 2004

Hi TC, so glad that you continue to do well.  Your story is truly an inspiration for others on this board!  May you enjoy many, many more years of good health and thanks for continuing to update us on how you're doing.  Be well.

ConnieSW
Posts: 1551
Joined: Jun 2012

I have missed you.

 

Frances, if you tap on TC's name, it will take you to her CSN space where you will find more details about her treatments.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Congrats!  We need to hear good news.

els19
Posts: 102
Joined: Jun 2014

Congratulations and thanks for posting. I love your suggestions on how you are coping and finding success! Thanks for sharing.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Way to go Taking Control!   Thanks for posting.

 

Kathy (Diagnosed in 2005)

dgrdalton's picture
dgrdalton
Posts: 152
Joined: Jun 2017

So good to hear from you that you are still doing so well!

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