Metformin Information

Beebster, since you have been following us you already know TakingControl58's posts.  I would be curious about dosage as well.  

Welcome.  I am very sorry to hear you are having a recurrence.   

Beebster,

I'm glad you had genomic profiling performed. It should be standard practice for all cancer patients so
the proper treatment can be determined at the the start of your diagnosis. They prescribe treatment without
knowing all the facts about your case.

1)I started metformin with 1000mg/day,500mg AM, 500mg PM. This is a dose typical for Type 2 diabetes patients.
2)I started the real metformin after two infustions of Taxol/Carbo. I continued with this dosage for the remaining
4 infusions of Taxol/Carbo. Make sure you get the extended release version so you don't get any upset stomach.
3)As you may know, I originally entered a trial that added metformin or a placebo to the Taxol/Carbo for Stage
3 and 4 or recurrent endo cancer patients. The dose in the trial was 1700mg/day- 850mg/am, 850mg/PM.  After
two infusions, I removed myself from the trial and my integrative oncologist put me on the real metformin. I believe
I was gettinga placebo, but won't know until the trial ends in 2019.
4) When I finished the chemo, I still had 2cm of tumors left. (but all my liver lesions were gone). My doctor
raised the metformin dose to 1500mg/day- 750mg/AM, 750mg/PM
5) I have remained on this dose since June 2015, I just recently dropped my dosage to 1250mg/day- 750mg/AM,500mgPM.

To track my NED status, I get about 35 blood tests every three months along with pelvic, abdominal and transvaginal ultrasounds.
The3 year anniversary of my diagnosis will be October, so I believe the tests will then be every 6 months for a few years. If something
suspicious shows up in the blood tests or ultrasounds, then I will get a CT scan. All that radiation just accumulates and can lead
to more cancer, so I'm trying to avoid unnecessary radiation.

I'll list the blood tests that are more relevant to endometrial cancer:
CA125, HE4 (better test than CA125), Ferritin, A1C, IGF-1(frequently raised before EC diagnosis), Serum Insulin, Prolactin, Estradiol,
Progesterone, HCG Total, Vitamin B12 (metformin lowers B12 so you should take a supplement and check your blood regularly),
DHEA Sulfate, CEA, Vitamin D, Adiponectin (low levels increase risk of EC), CA 15-3 (for breast cancer), CA 19-9 (for liver and colon cancer).

High insulin,estrogen (estradiol) insulin growth factor-1 (IGF-1), ferritin and low adiponectin andVitamin D are risk factors for EC cancer.
This is well known in the medical community so I don't know why doctors don't perform these tests regularly.  I'm doing them to
get advance notice well before something is happening,so I can treat the issue. Doctors just don't seem to practice preventive medicine.

If you have a mutation on the PI3K/akt/Mtor pathway like me and the pathway is activated, (mine was PIK3R1), metformin
inactivates the pathway.  They say this pathway is activated in over 80%of all EC cancer cases so you haveto wonder why they
don't test every woman for these mutations and prescribe metformin if they do have these mutations.  If you have a mutation on this pathway,
it is believed you will be resistant to chemo. It is all written up in the medical journals. Metformin is particularly effective on endometrial
cancer because endometrial cancer cells have alot of insulin receptors on their surface, and metformin controls insulin levels. It acts like
a targeted drug for cancer.

The anti-cancer properties of metformin were first discovered in 2005- there are over 3000 articles in medical journals
detailing all the benefits and previous studies at pubmed.gov (website of the National Institutes of Health). It is not FDA
approved as a cancer drug- but it treats the underlying conditions that lead to cancer and cancer metastasis. This is why oncologists don't want to
prescribe it.  But just remind your doctor that the chemo you are getting is also prescribed off label for EC, as the chemos we get were originally
approved for ovarian and breast cancer.  They are fast tracking expensive new drugs that have limited success but don't seem to want to
officially promote metformin when it has a much higher success rate- articles say it reduces all cancers anywhere from 30-70%, depending on
the cancer you have.

One last thing. I have been taking two low dose aspirins each day since I saw my integrative oncologist. I just dropped to one low
dose aspirin a day.  Aspirin reduces the risk of all cancers by 25%.  It inhibits an enzyme that causes inflammation in your body.
That's why it is given to heart patients plus it thins your blood so cancer cells can't stick together- they have to stick together to form
a tumor.

Let me know if you have any other questions.

Takingcontrol58
Linda

The dose of metformin I started on is what is typically given for Type II Diabetes. I had pre-diabetes. My highest glucose
level was 118, 111 at my diagnosis. I think my doctor put me on that dose to see how I reacted to it, then raised it a bit after the
chemo because I still had some tumors left (and I refused to go on Cytoxan maintenance therapy, another chemo drug).  I had no side
effects. (sadly, the doctor that helped me get to remission died shortly thereafter). I am meeting with my endocrinologist in a few weeks
and will ask him more about the metformin dosing. Since I'm in remission, I thought we could lower the dose. It is so hypocritical that
oncologists tell you that metformin has side effects (which are minor compared to those of chemotherapy, like new cancers, heart attacks,
neuropathy,hair loss, death). I am convinced they try stay away from this drug because it is generic, cheap, readily available and it works.
It may not help everybody, but it will definitely help some people, and they shouldn't be denied the drug because they don't know about it. 
We have to get this drug FDA approved for cancer treatment, so patients aren't denied the drug if they need it. I often wonder how many
people might still be alive if they were at least given the chance to try it.

Yes, the trial I entered in was at MSKCC, which ends in 2019. It was assumed I had 4-6 mos to live and was entered into a trial that
ends in 2019. MSKCC administered my chemotherapy.  They did not treat me.  I was being treated by my integrative oncologist,
which they did not like. They insulted him. He was famous and one of the pioneers in integrative oncology. When I got on the the real
metformin and removed myself from the trial, they called him unethical.  My doctor called MSKCC unethical because I was insulin resistant
and needed the drug. Insulin resistance is one ofthe key causes of endometrial cancer. If I hadn't taken matters in my own hands, I might have died.

Just my comment on the genomic panel.  My testing was done by Foundation One.  My gynecological oncologist/surgeon, who is with Lenox Hill,
sent in the sample for testing.  F1 tests 315 genes. Most of these other companies don't test all the relevant genes tied to EC.  Foundation One is
state-of-the-art.  They are much more comprehensive than most of the other testing organizations.  MSKCC never even discussed genomic
testing.  When they did the liver biopsy to confirm my metastasis, I had to push them to do genomic testing on the liver sample. 

Since your cancer came back after treatment, you should probably get a circulating tumor test done (blood test if you don't have a new speciman
from your recent recurrence). Your mutations can change after treatment. Foundation One now does this.  You can check out their website at www.foundationone.com.

I would definitely get tested for CA125 and HE4.  Your CA125 is 7 and you have alot of cancer.  Perhaps that marker is not as relevant for you. 
I would also get HCG. Either you are pregnant or you have cancer.  It is interesting that you grew alot of cancer
in about 6 months. I grew alot in 2 months.  You need to determine what is making your cancer grow and treat those underlying health
issues. Something allowed cancer to grow in your body.  IGF-1 is a key driver of endometrial cancer, along with insulin. What is driving your
cancer may be different from what drove my cancer but you have to get to the bottom of it.  If your body is conducive to growing cancer, it
can always come back.  I would also test for Ferritin.  It is used to track the success of your treatment.  Cancer cells love iron. My iron levels
were very high when my cancer metastasized-at abnormal levels- nobody but my integrative oncologist ordered that blood test. Now thatmy
cancer is gone, my levels are at a very normal level.  Iron fuels cancer by creating free radicals.

One last thing, I also get the standard pelvic exam and pap test every three months, along with the ultrasounds.

If you want to get into more detail on these things, you can send me an email.

Takingcontrol58

that sounds like a good idea based on what everyone is sharing- I hope you find that it works just as well for you!  Good for you advocating for yourself too!!!!  (((HUGS)))

Thank you. will keep everyone posted. wouldn't that be something if it could help us.......

wendybru said:

Metformin

UVA Charlottesville Va just stopped  a clinical trial for Metformin for uterine cancer due to "futility", no positive outcomes.  Yet some are helped by it, so no easy answers as usual.

Hello Wendy,

Where did you get the information on the status of the clinical trial at UVA? Their website still lists this clinical trial. According to ClinicalTrial it seems since March 2018 this trial is no longer recruiting new cancer patients which may suggest they have recruited an adequate sample size. I think we will have to wait until 2019 to see if Metformin is a useful addition during Paclitaxel/Carboplatin chemotherapy treatment. I wish they shared progress reports with the public before 2019.

Unfortunately, I think it shows there is no, one magic bullet for this beast.  I remember talking to my onc about it and she said trials showed to be promising, but as some of the ladies here say, it has done nothing for them.  I pray everyday for a cure for all.

SF73 said:

Hello Wendy,

Hello Wendy,

Where did you get the information on the status of the clinical trial at UVA? Their website still lists this clinical trial. According to ClinicalTrial it seems since March 2018 this trial is no longer recruiting new cancer patients which may suggest they have recruited an adequate sample size. I think we will have to wait until 2019 to see if Metformin is a useful addition during Paclitaxel/Carboplatin chemotherapy treatment. I wish they shared progress reports with the public before 2019.

My UVA oncologist told me.  Initially she had recommended it, but later (3/18) said they stopped it.  I notice they do not update that info very often, so always worth calling if interested.