Thought the pathology report would clear things up, but ...

I don't have a clue what even half the things you mention are, but I want to tell you that my first time around with UPSC (which was an adenocarcinoma), I had cancer in the uterus, both ovaries, the omentum, and the small intestine and was stage IVb.  I went into remission after surgery and six rounds of chemo.  Seven years later, this year, I was found to have a recurrence with cancer wrapped around the ascending colon, in the peritoneum and the paracolic gutter.  Again I had surgery and more chemo, and I'm in remission again.  The doctor did sound like he thought it might be back again in 5 years, and if so, I'll be fighting it again, but the good news is I'm still alive in the meantime.  I'm doing a little more to try to prevent it this time, taking Turmeric/Curcumin and Metformin, which should work on 4 of my 6 mutations found in my genomic testing.  I also have a stable liver cyst, but I think that's different from a nodule.  From my days of being an ER coder, I know that nodules are watched over a period of time to see what they do.  They aren't necessarily going to be cancers, as you already seem to know. 

I hope you get some clarification of what your report means tomorrow, and I hope you have a successful progression of your cancer treatment.

I was diagnosed with Stage 3, Grade 3 endometrioid adenocarcinoma in Oct 2014. 
Two months after surgery,cancer metastasized to my liver, spleen, vaginal cuff/outer
rectum and had nodules on my spleen, lungs and outer colon.  I advanced to Stage IV.
After one month on metformin, 88% of my tumors vanished. I was NED five months
later and have been in complete remission ever since. It is now over 3 years since I
was diagnosed. I started the metformin after 2 chemo infusions and continued for
a total of 6 infusions only, no radiation. I had miraculous results on metformin and
continue to take the drug, thoughI was never on a dose as high as in the trial.

I was in the trial you spoke about and got out of the trial after one month. You don't need
to be in a trial to get on this drug- it is generic and costs $5/month. It is considered one of 
the most essential drugs in the world by the WHO. This drug saved my life. Unfortunately,
my results will not be in the trial results.

My integrative oncologist,who I met with after 2 chemo infusions, put me on the drug.
I would highly suggest you get on the drug while you are getting your chemo. 
If your oncologist won't put you on the drug, speak with your family doctor.
It is that important if you are Stage IV.  

You said you have high levels of beta catenin- I had the mutation CTNNB1- which is the 
result of too much beta catenin and it activates the WNT/B catenin pathway, one of the key pathways
mutated in EC. Metformin inhibits the WNT pathway.  I would highly recommend you get genomic
testing on your tumor specimen to find out all your mutations. I recommend Foundation One. They are state-of-the art.
Perhaps you have the same mutation I had. Metformin may address some of your mutations,
but you have to address all that is driving your cancer, including the health conditions that led to your cancer.
For me, metformin also addressed my high insulin, glucose and insulin growth factor hormone levels- all
causes of endometrial cancer.

I wouldn't believe what your surgeon says about no one going past the five year mark.  It was
assumed i had 4-6 months to live by MSKCC, the top cancer hospital in the country. That was 
3 years ago. Doctors are not psychics. These top cancer hospitals don't treat cancer correctly
which is why they have such high failure rates.  They don't think "out of the box.' An advanced or
metastatic cancer patient needs an integrative treatment approach to heal cancer- which means
much more than just standard cancer treatment.

You have to heal your cancer, since cancer is "you." Your cells growing out of control. It is not a monster.

Takingcontrol58

I would recommend you speak with your primary care physician or your endocrinologist to get on metformin.
Metformin is "officially" called a diabetes drug, but it has many more anti cancer properties, very likely because
it lowers the levels of the key causes of cancer- insulin, glucose and insulin growth factor.  It targets the
inflammation and insulin pathways in our body which are frequently mutated in cancer.  It also targets
antiogenesis (cause of cancer metastasis- new blood vessels are formed by VEGF, vascular endothelial growth
factor) and cancer stem cells (aren't killed by the chemo and go onto form new cancer). It targets the 
mitochondria, so your DNA replacates without mutations. It does so many things for cancer it is amazing.

I was never diabetic, but pre-diabetic.  That alone is a reason to be on it, so you don't advance to
diabetes.  Then you would have more serious problems.

I will find some good articles on metformin and beta catenin- there are many of them at the
website of the NIH - www.pubmed.gov. You can print out an article and bring it with you
when you see your doctor.

Every oncologist should know the popular mutations involved in the cancers they treat, but
most don't and every person should automatically be tested for those mutations but they
are not. Oncologists don't know much about all that is involved in cancer or perhaps they
are just told by the facility they work for not to do these tests, because there are no cancer
drugs that address most of the popular cancer mutations. If they don' have a cancer drug to
recommend, they usually will not recommend another drug, when many existing drugs are
known to target cancer yet they are not cancer drugs, like aspirin and some antibiotics.  I also
took doxycycline, a popular antibiotic that is known to target cancer, as it kills bacteria that can
get into the cells. Used to treat Lyme disease.

You should really get your tumor tested so that you know all your mutations- metformin may
only target some of them and you may have to address other mutations differently.
But first you have to know your mutations so you know what to address.  The pathology report
does not give you that information.

It is really up to you to be in control of your cancer and your treatment.  You need a doctor that
thinks "out of the box."

Takingcontrol58

evolo58 said:

But I guess this is where I'm

But I guess this is where I'm getting confused again. Unfortunately, because I already had chemo, I'm not eligible for a Metformin trial and even if I were, there is a chance I'd be in the placebo group. At 4B, I can't afford that prospect.

I don't have diabetes. I sometimes go pre-diabletic with my A1C levels, but nothing to merit any drugs for it and recently, my A1C was fine because I'm trying to cut down on snacking. (I'm hypothyroid, and need to see an endo every six months because I also have Graves. I was hyper before I was hypo ... got nuked.)

So what doctor will give me Metforimin if I DON'T have diabetes? So far, it doesn't sound like either gyno onco doctor I saw will be willing to do that. I suppose I could steal from my husband's supply, but I don't think THAT would be a good idea.

 

After getting a call from my oncologist, my PCP did not hesitate to prescribe me Metformin even though my fasting glucose was in 70s-80s  and Hb1ac was 5.1%. After being on Metformin for a month we just measured my Hb1ac and it is 4.8%, I guess that's as low as it can be. Not sure if Hb1ac would be very accurate during chemo since the hemoglobin levels keep varying throughout the treatment. I also dont know if Metformin could help me in my cancer treatment since I still don't have the genomic profiling of my tumor. (it is a long story that involves bureucracy, incompetence, and having too many cooks - CPMC,  UCSF, and Stanford) Even though I don't know if I have the mutations that Metformin is shown to work, I figured I will take it after learning the anti cancer properties of it from takingcontrol58.  Thanks again for sharing your story, takingcontrol. I also learned from this forum that Metformin interacts with the solution used in the CT Scan with contrast. I think the current recommendation is to stop taking Metformin the day of imaging as well as the next 48 hours. So please check with your doctors if you are scheduled to have a CT scan. 

Evolot58

Im so glad you are getting aswers to your questions. Im glad you are seeing lots of doctors and taking advice from the ladies here on the group. Im glad you are not giving up an pushing forward. Knoledge is power. Im comfident you will get your answers and eventually know where and what to do with your situation. 

Love janae

evolo58 said:

No problem. It seems that I

No problem. It seems that I have "sausage fingers" all over the place (I usually know how to spell ... really!), and I'm afraid I can't blame the cancer for that.

Looked into Foundation One ... unfortunately, it's way, way out of my budget. Just paying for current treatments is going to be daunting. It seems that a local cancer center facility, however, is doing its own version of tumor sequencing, so if the price is more managerable, I might want to look into that. Right now, there are two nationally well-known cancer facilities within  a decent driving distance from me both NCI-recognized, and I'm looking into either for surgery. I'm getting my treatments in one of them. The second one (the one I went to for the second opinion) is the one with the sequencing, and it may tip the scales for me. For now, however, all of us agreed ... doctors, I and family members ... that I should stick with my current facilitiy during neo-adjuvant treatments. Sometime around the third chemo session, however, I will need to decide, so I'm trying to gather info now. The second one is the one with the doctor who has done much research into UPSC ... another positive point. The hospital itself, however, ranks slightly below the one I'm currently in. (Nationally ranked.) 

Evolo58,
Foundation One has a financial assistance program.  I would suggest you call them
directly and inquire about this.  You may get the testing for free. They are one of the most
highly respected testing organizations and are working with the NIH.

Takingcontrol58