In the recurrence club now

Stay strong Becca. We are all with you.  

never seemed more appropriate.  Becca, your post reminded me of a woman I met at a Cancer Survivorship forum a few years ago, right after I was diagnosed.  She had been in treatment for 12 years.  12 years!  And she was the most vibrant, articulate, spirited woman in the room. Her cancer kept coming back, but she kept on living her life despite that.  So while it's possible you may never reach long term NED, that doesn't mean cancer has won.  So stay strong, stay hopeful, and when that's hard to do, know that all of us are here to be strong and hopeful for you.

Chris

Becca, this isn't the news anyone wanted for you! We actually don't want any new members in the recurrence club, and I'm so sorry to have you join us. That said,  I do question your doc's opinion that there's no chance of a cure or long-term NED. I'm not understating the seriousness of the situation, but I find that prognostication to be to be rather premature. When I'm feeling down, or panicked, or can't see the way forward, I wander around the other forums and have found a LOT of people who are/were Stage IV and long-term NED, or even 'cured'. I bookmarked some of them to revisit when I need inspiration, which is often. I'm glad you're having geonomic testing and hope you can consider a live tumor assay as well. We love you and we're here for you in every way possible. Hang tough, you'll feel much better when you have a new treatment plan going. Best always, B

Oh, Becca,  I am so sorry to hear this.  This is a club I have belong to for a long time now.  There is hope in this club.  New treatments are always coming, maybe already here.  There are several immunotherepy treatment in trials, Match trials, and others.  I have been on treatment for recurrence for over 3 1/2 years and I have many more good days than bad.  It is not the live I had immagined, but it is still a good life.  I have been able to welcome and cuddle four great grand babies.  My husband and I have been able to travel between treatments.  Some times have been hard, but the good days make up for those.

Hugs and prayers, Lou Ann

Although I don't have the same diagnosis as you (I am endometrial adenocarcinoma Grade II), I am in the third round of treatment for a second recurrence and was first diagnosed 12 years ago.  At my first recurrence, in 2012, there were nodules scattered across both lungs.  They were not biopsied but I was started on 400 mg daily of Provera (medroxyprogesterone acetate).  Subsequent scans showed shrinking tumors and by January 2015, I was NED.  I continued on the progesterone until December 2016 when the second recurrence was found and I began my first experience with chemo (Carbo/Taxol).  This time again with the nodules and no biopsy.  I still have 2 treatments to go but the nodules are gone except for one that tiny is still shrinking.  So, there are avenues to explore.  I wonder if progesterone would work for you and/or whether they can throw in some Metformin for you with the Carbo/Taxo (that combo plus Metformin is the subject of an endometrial cancer trial that has been posted in another discussion here).  It's great that you are getting genomic testing, raising the possibility of targeted therapy.  And perhaps surgery is a possibility.  I hope you will continue to share on the board, both to impart valuable info to all of us but also to reap the positive energy that is found here.  Best wishes.  Oldbeauty

I am also in the same situation.

I am reassured to know that there are other treatments than chemotherapy. Chemotherapy is no longer an option for me

The doctor told me about hormone therapy ...

Me too I will have biopsies for a targeted treatment.

Becca, so sorry to hear your news! Stay strong and remember we are all here to help lift you when you need it.  I agree with what the other ladies have said.  Please come back and let us know what your path forward is going to be. Sending you loads of support and positive energy!

Love and Hugs,

Cindi

takingcontrol58 said:

Becca, have faith in yourself

It is unfortunate that your oncologist is telling you there is no chance of a cure or long term NED. They have
no idea of your fate. That is in God's hands.  It is ironic that your doctor said you have a systemic disease now- cancer
is a systemic disease from the start but doctors treat the tumors, not our entire body system.  If you treat cancer as a
systemic disease from the start, I think you have a chance of healing your cancer.  That is what I did. You have to determine
what is making cancer grow in your own body and treat the cause. You will have to do the detective work as the doctors don't
care how you got cancer, they just give you more cancer drugs for the tumors.

If you haven't read my complete story, I first posted on this web site on Jan 10, 2016- (though my journey began August 2014).
entitled "NED from Stage IV metastatic endometrial cancer."  I too was Stage 3, Grade 3 (I believe the grade is more important
than the stage, as Grade 3 is fast growing). I was endometrioid adenocarcinoma Grade 3 which has many similarities to serous
carcinoma if you read the medical journals. My cancer was very aggressive and advanced 2 months after my total hysterectomy.
I had cancer all over my body, including my liver, spleen, vaginal cuff/outer rectum plus nodules on my lungs, spleen and outer
colon.  I began taking metformin one month after I started chemo (Taxol/Carbo). In two months, 88% of all my tumors were
gone and four months later I was in complete remission.  That was August 2015.  I've been in complete remission since then.
I did not have external radiation or brachytherapy, only 6 infusions of chemo. Personally, I believe I did much less damage
to my body so my immune system was able to recover quickly, though my immune system never dropped low- never had to
take Neupogen or Neulasta.

 
Cancer returns because you have not addressed the source of the growth.  Chemo kills "daughter" cells but does not kill cancer
stem cells that go on to cause metastasis.  Metformin kills cancer stem cells.  For me, metformin lowered my insulin and glucose
levels, which were fueling my cancer, as I was insulin resistant. My high levels of insulin caused one of the key mutations I had
which is found in 80% of all endometrial cancers.  I also had very high levels of iron (ferritin). Iron causes cancer by causing
DNA damage (oxidative damage) which is why taking antioxidants is so important. Every cell needs iron to divide, and cancer
cells divide very rapidly, so you are feeding the cancer.  Menopausal women are at increased risk for high iron levels.
Chemo also causes oxidative damage.

I'm glad you are getting genomic testing now- though it should be performed as part of the initial staging process so you better
understand the entire "systemic" picture of what is going on. I'd be curious to know what your mutations are.  Metformin addresses
some key pathways in the body that are frequently mutated in endometrial cancer which is why it is proving to be so effective
for our type of cancer (which carries alot of insulin receptors). I think it should be given to all endometrial cancer patients, just
like Tamoxifen is given to breast cancer patients to address estrogen levels.

I also take 2 low dose aspirins a day- reduces chance of all cancer by 25%- it should be discussed with every cancer patient.
I also take 44 different supplements every day.  You have to keep the body in balance so it works properly. Many supplements
have many anti-cancer properties. You have to attack cancer from many directions; cancer drugs play a small part.  The most
important thing to remember is that it is your own immune system that kills cancer. So it is very important to boost your
immune system with supplements and a healthy, organic diet.

Remember one thing about scans.  Cancer doesn't grow on the schedule of our scans- that goes for colonoscopies and mammograms.
That is why I get very comprehensive blood tests every 3 months. Things show up in the blood much sooner. I put
more faith in blood tests because you can watch the trends.  CA125 does not give you the full picture of what is going on in your
body. You also need HE4 for endometrial cancer, plus there are many more tests that will warn you of a march to cancer. 

I'd be happy go dive into more detail with you if have more questions.

Cancer has made me healthier than I have ever been in my life as it forced me to address all the underlying
health conditions that led me to acquire cancer.  I believe that is why I have remained NED.  It will be 3 years
in August since I began my journey.  The radiologist who performed my liver biopsy at MSKKCC told my husband
he estimated I had 4-6 months to live.  I may visit him in January, 3 years from when I saw him to show him
I'm alive.  More doctors need to understand that people can survive late stage cancer.  Maybe then they wouldn't
tell all us late stage cancer patients that there is no hope.  I believe a miracle happened to me and I am very grateful for it.

There is a great book I've recommended  before on this site- "Cancer is not a Disease" It's a Survival Mechanism, by Andreas
Moritz.  Others may disagree with his theory,  but I think this explains what cancer really is.  It is what happened to me.
Once I understood this, I lost my fear of cancer as perhaps it is not out to kill us but to save us from all the damage we
have done to our bodies.  Remember, not everyone gets cancer. Those of us that get cancer must have alot of internal damage
in our bodies. Cancer is there to sop up the mess.

Takingcontrol58

 

 

Hi, Your post is very informative. You really do your homework! What is metformin?  I know I could probably it up, but I think you'd explain it better. How does a person take it? Pill? 

My mom is stage 1, but grade 3 serous. Just finished chemo and radiation 2 weeks ago. She goes for her 1st check up on July 10th. She's 78. I'm just being proactive. Thank you so much. Sue  

Becca.  I was sad to hear your news but I believe in you!!!!  Your a fighter I know it.  We are here for you dont ever forget that.  Look at al the responses you got.  You are truely loved.  My thoughts are with you. 

DaughterSue said:

Hello Taking Control....

Hi, Your post is very informative. You really do your homework! What is metformin?  I know I could probably it up, but I think you'd explain it better. How does a person take it? Pill? 

My mom is stage 1, but grade 3 serous. Just finished chemo and radiation 2 weeks ago. She goes for her 1st check up on July 10th. She's 78. I'm just being proactive. Thank you so much. Sue  

Metformin is the most prescribed diabetes drug in the world. It regulates, glucose and insulin, and is typically given to people with
diabetes, pre-diabetes (that was me) and PCOS (polycystic ovarian syndrome).  It also happens to have about 20 anti-cancer
properties.  It targets many processes and pathways involved in the cancer process (yet the medical community continues to
try to develop more expensive drugs for cancer patients and not tell their patients about metformin). In fact, there are not 
successful cancer drugs today that do what metformin does (with limited side effects). It is not FDA approved specifically
for cancer but can be prescribed off-label (almost every chemo drug is prescribed-off label,meaning it is prescribed for a
condition for which it was not officially tested and approved). It is a pill, generic drug and cheap.

All the medical researchers and the good doctors are well aware of its benefits for cancer.   It is also believed to be a anti-aging
drug- to prevent you from getting cancer,  heart disease and alzheimers until late in life. It may even increase your life span
to over 100.

Thousands of medical articles at www.pubmed.gov (website of the National Institutes of Health).

Takingcontrol58