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5 years, still NED from metastatic EC

takingcontrol58
Posts: 243
Joined: Jan 2016

 

It has now been five years since my D&C and official diagnosis of Stage 3b, Grade 3, endometrioid adenocarcinoma in Oct 2015. Grade 3 endometrioid is put in the same category as serous carcinoma, the most aggressive type of endometrial cancer. Two months after my hysterectomy my cancer  metastasized to my liver, spleen, vaginal cuff/outer rectum and I had nodules on my spleen, outer colon and lungs, before I began chemotherapy. Seven months later I was completely cancer free and have remained so ever since, with no recurrences.  I thank God every day for my health.

 

I began posting on this site in January 2016. (you can read my first post at https://csn.cancer.org/node/299313.

 

I decided to write this post for the women who have recently joined this site and those going through an advanced or metastatic cancer diagnosis.  I want women to know that metastatic cancer does not have to be a death sentence and that you can heal metastatic cancer and go into remission.  If someone like me who had multiple metastases in multiple locations was able to get into remission, I believe it is possible for others.

 

For those of you familiar with my story, I used integrative oncology to get to remission, a combination of some standard cancer treatment and various complementary treatments. I believe this is the only way to heal metastatic cancer. My last chemotherapy session was May 2015 (I had a total of 6).  I have used no cancer drugs since then. The rest of my treatment plan is all complementary medicine. I call it a targeted plan for me, the main focus of which was lifestyle changes plus metformin and aspirin, doxycycline (about once a year) and supplements (many which targeted key processes involved in the cancer growth process and helped limit side effects from the chemo).  

Some of what I have learned during my journey.
1) Take control of your health as soon as you are diagnosed with cancer. You have to determine the root causes of your cancer. Your issues could be physical, mental or emotional, but you will have to address them to heal your cancer. Cancer is a symptom of many issues. 
2) Question and research everything about cancer and the treatments recommended for you.  You will have to deal with the outcome of your decisions, so try to make treatment decisions based on facts, not fear. You don’t have to use every cancer drug or treatment that the oncologist recommends. You have to weigh the risks/benefits of the treatments and make your own decisions. I did not use all the cancer drugs recommended for me when I metastasized.
3) Try not to harm your body in the process of trying to kill your cancer. Listen to your gut. I used minimal cancer treatments despite all the cancer I had. I stopped chemo when I was more afraid of the chemo than the cancer.
4) You need to heal your body, and get your body back to a balanced, healthy state. Your body is what will heal itself, but you need to provide the proper support.
5) Many people have criticized integrative medicine, but they may have not been diagnosed with metastatic cancer.  There are no cures for metastatic endometrial cancer from the cancer industry, so you have to do much more. You have to work with all that is available to you at the time of your diagnosis, and there is a lot available, much more than just standard cancer treatments.
6) Personally, I put my faith in God in my darkest times. I followed faith, not fear.

You have to use an arsenal of tools to defeat a metastatic cancer diagnosis, and it takes time.  And the plan you put in place to heal your cancer you will have to follow the rest of your life.

Takingcontrol58

 

jan9wils's picture
jan9wils
Posts: 69
Joined: Mar 2017

Congratulations on your 5 year anniversary! I am so encouraged by your results and look forward to the day I can consult with an integrative onc/gyn I've found near where I live.

zsazsa1
Posts: 343
Joined: Oct 2018

So happy for you, 5 yrs NED after stage 3 grade 3 EC is just wonderful!  Wishing you many more years of health and happiness.

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Thank you for sharing your diagnoses and treatment plan and lifestyle/philosophy. Your journey offers hope and valuable information to all who come to this board looking for help. I am very happy for you!! Your Faith sounds like it played a major role in the darkest of days. Here’s to many, many years of dancing with NED and no more evidence of this awful disease. 

Lori

Mercorby
Posts: 12
Joined: Jan 2017

Congrats on your post cancer thriving!

Feelingalone74
Posts: 236
Joined: Jun 2019

Takingcontrol58, Congratulations on being NED for 5 years! I hope that continues forever for u. thank u for sharing your story.  Your philosophy has helped me make a major decision I've been contemplating.  Now I will leave it in God's hands. 

Your story has given me hope and encouragement!

Kindly,  Michelle 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1552
Joined: Jun 2015

Happy Anniversary! Thanks for sharing this major milestone. I so appreciate your posts and share your wisdom and experience with others.

Love and Hugs,

Cindi

jjtrim's picture
jjtrim
Posts: 18
Joined: Mar 2019

Thank you for sharing.  It gives me so much hope to hear about stories like yours. 

 

MAbound
Posts: 871
Joined: Jun 2016

Yay, TC!! You know I'm a big fan of your story and advice, so I am so glad that you keep posting.

This is such a good post that I went to look at your MySpace and found it empty. Surprised  You've got to be tired of repeating yourself, so maybe you could share the details there to refer people back to as new members join the group. It's certainly easier than always needing to retype or trying to hunt down your old posts. Who knows what was lost forever from that catastrophic ouatage.

If anybody wonders "what now" after they finish treatment, TakingControl's story and posts are a really good place to start.

takingcontrol58
Posts: 243
Joined: Jan 2016

MAbound,
I finally put my first post on MySpace page. Thanks for all your kind words!

 

Takingcontrol58

CancerFree4ever's picture
CancerFree4ever
Posts: 8
Joined: Sep 2019

Thank you for your very encouraging, hope-filled post. I am rejoicing with you in all God has done, and how He has guided you through this trial. You are an inspiration to me, at a very critical time. We all have our stories I know, but you are spot on in regards to finding WHAT it is that is impacting our bodies, and get it in a place for healing, as opposed to a downward spiral. This caught me in the midst of a relocation to be near family, and where my support would be. Been through the cancer walk with my husband almost 10 years ago that lasted 1 year. He is now in heaven. Relocating seems daunting, as my Oncologist is here, and he's a good one. My kids are near the Cancer Center where my husband was treated, and I love those doctors, but changing medical insurance......having cancer.......seems also an impossibility, plus time is precious now in knocking out this recurring Stage 1 Endo Cancer now in vag after 2 years clear.

Today your post has pointed my eyes toward ongoing nutritional changes I have made.....no carbs or sugar being one. I am also on probiotics. Heading into Radiation in the coming week. Any input in regards to keeping the immune system strong, or any other building up of tissue and bones is very welcomed.

All the very best for your ongoing health. God bless..

 

takingcontrol58
Posts: 243
Joined: Jan 2016

 

The supplements I have contined to use for nearly 5 years that help boost the immune system are called
medicinal mushrooms. Below are the four I use:

Maitake D Fraction (a liquid)
Chaga- considered the Russian curcumin
Shitake
Coriolus PSP (turkey tail mushroom)

All these mushrooms contain compounds that are considered anti-cancer. I won't list them all here. You can use
a site www.draxe.com to look up all types of supplements and herbs. Here is another good article on all the anti-cancer supplements
https://thetruthaboutcancer.com/types-of-mushrooms-cancer/?utm_campaign=ghc-gut-kit&utm_medium=email&utm_source=weekly-digest-ttac&utm_content=types-of-mushrooms-cancer&utm_term=&a_aid=5a84a1f683718&subid1=WeeklyDigestTTACOct27Mushrooms&mpweb=144-8351288-409641132
Medicinal mushrooms have been used in Chinese medicine for thousands of years, yet western medicine refuses to
acknowledge their benefits.

Also, Vitamin D is key in keeping the immune system healthy. It plays a role in 200 functions in the body. It is also involved
in building your bones. It helps your body absorb calcium. The ideal Vitamin D level is 70, though most doctors tell patients that
a number like 30 is good.  It isn't enough for a cancer patient.  When you have active cancer, the better range is 70-90. So you
need to supplement and regularly monitor your vitamin D levels, as they fluctuate all the time. 

I use the brand Pure Encapsulations (it is a liquid- I use about 3-4 drops a day under my tongue). It is also important to
use the right formuulation of supplements.

 

Takingcontrol58

mamlicsw's picture
mamlicsw
Posts: 30
Joined: May 2019

for posting this encouragiing news.  My cancer is grade 3 and I've been told it often reoccurs.  You have made me feel hopeful, even if I do have a recurrence.  Mary Ann

takingcontrol58
Posts: 243
Joined: Jan 2016

You mentioned that Grade 3 often reoccurs. That is true, as it is fast growing.
Also, about 15% of Stage 1 ECs recur. Even though you cut out your uterus, it
was your entire body that developed cancer. Cancer is system.

I personally believe cancer reoccurs when you have not addressed the source of the growth.
You might kill a tumor with chemo but then months later, a new tumor might form.
It is important to remember that both chemotherapy and radiation can help new cancer
to form, as they create an inflammatory environment in your body, which is a key driver
of cancer, and also cause DNA damage to healthy cells.

As I mentioned in my summary, I think it is important to try to determine why you developed
cancer and try to address those issues. When your body re-develops an environment for cancer
to grow, a recurrence happens. So you want to do everything you can to clean out all the toxins
in your body or mind that can lead to cancer.

Takingcontrol58

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

We all celebrate with you, Takingcontrol.  We need to hear these things.  Continued NED!

oldbeauty
Posts: 194
Joined: May 2012

Adding my congratulations and best wishes for your continued good health, takingcontrol!  I am grateful for your detailed posts, which pointed me to look into Metformin.  I did convince my PCP to write a Rx for Metformin after she looked into it herself.  I've been on a 2000 mg/day dose for close to two years.  I also did finally find an integrative medicine-in-training doctor whose academic interest is cell mitochondria.  He prescribed various nutritional supplements to support cell health and cell energy.  And he asked me to go on the Mitogenic Diet (which is a lot like the Ketogenic diet except it allows a few more carbs per day).  I am two years past chemotherapy for my second recurrence since frontline treatment ended in October 2005.  I have confounded a few doctors that I am still upright after 14 years (I was Stage IC, Grade II (old staging system) endometrioid adenocarcinoma).  In my case, we are watching a small single pulmonary nodule, 5 mm, discovered in December 2018.  It has grown slowly since then, now measuring 7 mm in my left lower lobe.  It's still too small to find to biopsy or treat with surgery.  My doctor has ordered another CT for the end of January.  She's willing to believe that I may well be benefitting from Metformin, if, in fact, this nodule is malignant.  I maintain my ideal of, if not stability (aka benign), then waiting until it's large enough to harvest tissue for a definitive diagnosis.

Chemo was unpleasant but survivable.  It did take a toll on my body (very little hair regrowth, marked aging of skin, significant neuropathy in my feet) but I worked hard to recover my vigor.  I do credit the low carbohydrate, high protein and generous good fat diet for my current state.  But I wouldn't dissuade anybody from doing chemo or radiation.  I've had good responses to both (and I've had external pelvic radiation 2x).  

I don't know what takingcontrol determined was the cause of her cancer.  For me, if it wasn't simply an unfortunate glitch in normal cell formation, maturation and differentiation, then it was probably the highly stressful life I lived from childhood into my 50s when I was first diagnosed.  But who knows.  I do not believe I am cured of cancer.  I've had years long remissions, and I hope this latest creature remains stable or very slow growing because I feel fine and I am active and happy in my life.  But the pragmatist in me believes that, once you've recurred you cannot be cured but you can hope for control.  And I feel that there are things that I do that help my healthy body control the enemy.  I certainly am not at peace with the terminal nature of my disease and I am in search of a group of metastatic disease sufferers to join for discussion.  But all in all, life is good.

Takingcontrol's achievement is magnificent, especially given the spread of the disease that she beat back.  It does provide a story of hope for all us on this journey.  And we will take all such stories we can get, and I'll count myself as one more from a 14 years survivor.

Best wishes to all.  Oldbeauty

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

Congratulations TakingControl on 5 years NED and am wishing you many more! Appreciate your sharing.

OldBeauty, a group for metastatic disease sufferers is a great idea. 

janaes
Posts: 772
Joined: May 2016

Taking control i think thats great. 

SF73
Posts: 276
Joined: Oct 2017

I realized that I didn’t post here. Congrats on your big milestone Takingcontrol! And thank you for sharing your story. I remember reading your story over and over again during my treatment. It gave me so much hope. Wishing you all the best!

Armywife's picture
Armywife
Posts: 315
Joined: Feb 2018

Somehow I missed posting here too - you are an incredible inspiration to this fellow Stage IV girl.  Thank you for all the insight and info and for inspiring us to.....take control!

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