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Metformin question

Red Dahlia
Posts: 16
Joined: Apr 2016

After reading about Metformin on this board I asked my oncologist about it.  He said in 2016 it is not a standard treatment, but that could change.  There is research being done at Mayo.  He also said to check with my regular doctor at my next appointment since I did have a fasting blood sugar of 102 the year prior.  He said he wouldn't be opposed to me going on it if she felt it was warranted.  My general doctor gave me a perscription saying she is using it for many woman who struggle with weight loss, pre- diabetic etc.  (My blood sugar was 98 this time.) So, now I am trying to decide if I should take it.  Has anyone with endometriod  type started on Metformin?  Any side effects? Thank you.

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

My last appointment with my gyn/onc doctor about 5 weeks after the finish of my chemo about his thoughts on metformin.  He said the side effects was why he wasn't recommending it.  I am not a quick thinker but ponder things later and then my mind thought and what about the side effects of chemo there pretty rough on our bodies.   Why doesn't more testing go on with the effects of metformin and the benefits cancer victims with tumors are receiving from taking the drug.  I will be asking this question of him when I go in for my 3 month checkup.

I am not taking metformin no need for it at this time but should I need it down the road for any tumors that might develop I will be question this quite heavily.  From what I have read on this forum with the results other cancer patients are having with the good results in my mind it would be worth a try.

Jerri

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

asked my docs about Metformin. They were very high on its effects, recommending it often since ongoing research is in process at the university (Univ of North Carolina). But after my surgery pathology report confirmed "no further treatment needed" no prescription. I understand their position but I would like to be taking it. I think I verge on insulin resistance anyway and the mechanism suspected for cancer (stabilizing DNA in cells making them less susceptible to mutation) is very powerful. I'm going to ask again. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

I told a friend I met with Stage 3 UPSC and while she still showed "clear" her CA125 numbers were rising.  She is on Avastin and when she asked her doctor for it they said they weren't recommending it but her PCP did give her a Rx for it and she has been taking it.  At my last visit my onc said there is a lot of research on it as it seems to be a "miracle" drug much like aspirin is.  

Everyone has to make their own decision and I hope it helps people.  

takingcontrol58
Posts: 263
Joined: Jan 2016

Red Dalia,
In Nov 2014, I had a total hysterectomy and was diagnosed with Stage 3B endometriod adenocarcinoma.
Two months later, right before I was to start treatment, my cancer metastasized to my liver, spleen,
outer rectum and nodules on my lungs, outer colon (34cm in total). 

I had two 2 chemo infusions of Taxol/Carbo and then got my integrative oncologist to put me on metformin.
I was in a trial at Sloan that added metformin or a placebo to the Taxol/Carbo but couldn't risk getting a
placebo.

After one month on metformin, 88% of tumors disappeared on their own. After my 6th chemo infusion, still had 2cm of
tumors left. Stayed on metformin, though a high dose, and 3 months later I was in complete remission, 6 months from
when I started taking metformin. Sloan had told me I had 4-6 months to live. That was August 2015.  I am coming
up on one year in remission.  Still remain on metformin.

There are over 2800 articles at www.pubmed.gov(website of National Institute of Health) on the anti-cancer benefits
of metformin for many types of cancer. They have known of its anti-cancer benefits for a very long time and continue
to do study after study.  Yet they have no problem today with fast tracking dangerous new immunotherapy drugs with
limited testing.

Endometrial cancer cells have many insulin receptors-I was insulin resistant- I think that is why
metformin was so successful for me.  Also, it is believed that metformin may help prevent cancer-
that is why you have to stay on it- you have to find what made your cancer grow in the first place- for me,
I believe the major cause was high insulin levels. My glucose levels were high but I was not diabetic.

Ask you doctor to test your insulin growth factor (IGF-1). A high level can indicate endometrial cancer, also colon
and prostate cancer. Mine was very high. Now it is very normal.  You should also be tested for Ferritin (tests iron
levels). Mine was very high when my cancer metastasized.

There are so many studies that have already been done with metformin that it is ridiculous that they continue to
use that as an excuse.  It is a drug that 150million people already take.  It is considered by the World Health
Organization as one of the 100 "essential drugs" for its safety, efficacy and low cost.  Metformin is one of the
safest drugs in the world. Chemo is one of the most deadly. How they can talk about the side effects of metformin
yet prescribe chemo is hypocritical.  It is a cheap lifesaving drug for many.  It could be for you.  You won't know
until you try it. I experienced no side effects with metformin.  I personally believe the cancer industry does not want
to prescribe this drug because it is low cost- they would rather give you chemo drugs that are expensive and are
known be be ineffective.

Chemo does not stop the growth of new cancer. It may shrink your tumors or make them disappear, but you have to
address the root cause of your own cancer or it can always come back.

Since I started the metformin in Feb 2015, I have had no new cancer after having been given a death sentence.
No chemo provides those types of results. None of them.

If metformin worked so well for me with my metabolic dysfunctions, I'm sure it can help many more women with the
same profile- maybe it will delay your progression free survival or help you live a longer life.

One last thing, one of the things metformin does is what Avastin does- stops angiogenesis- formation of new blood
vessels to feed new tumors. That is a key process involved in every cancer. Avastin was recommended for me but
I refused when I learned metformin did the same thing, with no side effects and no needle in my arm.

You have nothing to lose and everything to gain.

I believe I have been given a miracle from God and want to share my sucess with other women who may
benefit from what I have learned

Takingcontrol58

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

I have to agree with Takingcontrol58 for the most part.  However, I have been on metformin for years and still developed cancer.  Metformin is VERY cheap generic with few side effects AND if there is a chance it can help control tumor development and growth, then it should be prescribed.  Chemotherapy works SOMETIMES; radiation works SOMETIMES; metformin works SOMETIMES - why not try it???

https://sciencelife.uchospitals.edu/2015/05/20/study-adds-diabetes-drug-to-current-state-of-the-art-therapy-for-patients-with-ovarian-cancer/

Love,

Eldri

Red Dahlia
Posts: 16
Joined: Apr 2016

Thank you for all the replies.  I am so glad Metformin put you in remission Taking Control.  I think I was just scared to put one more drug in my body.  I am currently NED (finished treatment April 29.)and am looking at using this as a preventative since I was diagnosed Stage 3A and grade 2  type 1 cancer.  The points made about taking chemo and knowing its side effects while Metformin has very few side effects hit home.  My GP assures me it doesn't act in a way that causes  large drops in your blood sugar, and my having a fasting blood sugar of 98 is still considered high by some sources.  

One more question: What do you do when you have scans with contrast.  I read Metformin can be a problem then. I have a CT in August.  

Thanks so much!

 

 

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

I would say the one side effect is diarreah. Try the metformin er seems to make the diarreah way less.

takingcontrol58
Posts: 263
Joined: Jan 2016

Red Dahlia,

I stop the metformin the day before the CT scan and you can't resume the metformin for
48 hours after the CT scan.

One other thing on metformin.  You shouldn't take if you have kidney issues.

A question for you.  Do you know your gene mutations? Metformin reverses a key
gene mutation and signallling pathway found in many cancers, particularly in endomettrial cancer.
I happen to have mutations of both so perhaps this could be why metformin worked so well for
me as well as controlling my insulin and glucose levels.

Takingcontrol58

Red Dahlia
Posts: 16
Joined: Apr 2016

Takingcontrol58,

I'm not totally sure about gene mutations.  They did test me for Lynch syndrome and did an endometrial panel which were all negative.  Is there something else I should ask for?

Thanks

takingcontrol58
Posts: 263
Joined: Jan 2016

Red Dahlia,

My surgeon sent my original tumor for genomic testing to Foundation One. They are one of the cutting edge
firms doing this testing.  They test for 315 genes and 28 gene rearrangements. Lynch Syndrome only tests for
a specific set of genes. Lynch Syndrome can also cause colon cancer and melanoma, along with EC.

I had 4 gene mutations, two of which are known to be mutated in many endometrial cancers. The most popular mutation in EC
is on the p13K/AKt/Mtor pathway.

Two of the genes I have that were mutated include  PiK3R1 (part of P13K/Akt/Mtor pathway) and CTNNB1 (causes basic type 1 endometroid cancer to
be very aggressive).  By being mutated, they were activated.  Metformin inactivates the Mtor pathway.  This pathway is also often mutated in 
breast cancer (but they don't seem to tell this to women). It is one of the most important pathways in our body. The CTNNB1 mutation is found more often in ovarian cancer than endometrial cancer. It regulates the Wnt signalling pathway.  This mutation activates the Wnt signalling.  Metformin inactivates this signalling.  There is evidence that if you have this mutation, it can cause Stage 1 endometrioid adenocarcinoma patients to have a cancer recurrence. 
Alot of women who have recurrences have Stage 1 or Stage 2 cancers.

So for me, metformin may be fixing two of my gene mutations.  Were these the specific cause of my cancer?  I don't know. But if they
were, perhaps I went into complete remission from metastatic cancer (for which there is no known effective treatment) because of
the metformin. I still had 2cm of tumors left after the chemo finished. Metformin also lowered my insulin growth factor, which was very
high and is one of the key drivers of endometrial cancer, along with breast and colon cancer.  It is a hormone, just like estrogen. 
I believe every woman with EC should be tested for this regularly.

It is important to determine all the factors you have that caused cancer to grow in your body, and it can be alot of things. You have
to fix those things or cancer can always come back because you still have the environment to grow cancer.  Chemo does not fix these
things. The cancer industry does not treat the sources of our cancer.

I never heard of an endometrial panel? What was this and what did it include?

Regards,
Takingcontrol58

 

MAbound
Posts: 1150
Joined: Jun 2016

Thanks for sharing. I got rescheduled for seeing a geneticist in August when I was supposed to have had it July 4th. Maybe what you shared will help me to ask some intelligent questions and help us to decide whether or not to pay for it out of pocket if my insurance denies the lab work (coverage depends on what the lab submits for re-imbursement...I'm told it could cost around $3000 for us without the insurance coverage otherwise!)

Red Dahlia
Posts: 16
Joined: Apr 2016

Hello Takingcontrol58,

I looked up my report and it says Endometrial Cancer panel. It says the genes evaluated were BRCA1, BRCA2, CHEK2, EPCAM, MLH1, MLH2, MSH2, MSH6, MUTYH, PMS2, POLD1, PTEN, TP53.  

All were reported as negative.  These do not to seem to correlate with what you were tested for. Thanks for the info. On insulin growth factor

takingcontrol58
Posts: 263
Joined: Jan 2016

Red Dahlia,
I looked up all the genes you had evaluated- they are all included in the Foundation One profile (except I didn't see MLH2).
Mine were all negative as well.

My test was done in February 2015- they update the panel periodically.  You weren't tested for many of the genes tied to
endometrial cancer. BRCA1 and BRCA2 is more is breast and ovarian cancer. MSH2, MSH6, PMS2, MLH1 (Lynch Syndrome)
PTEN and TP53 are tied to endometrial cancer.  But endometrial cancer has more frequent mutations in the PI3K/AKT/Mtor pathway than
any other tumor type studied by The Cancer Genome Atlas (TCGA). According to my Foundation One genomic test, 21-43% of endometrioid
tumors have a mutation on this pathway.

As I mentioned, the Foundation One panel tests for over 315 mutations.  You need to be tested for many more gene mutations to
figure out what may be mutated. It is odd that they only tested you for a few genes that are relevant to endometrial cancer.

A great article to read to become familiar with all the genes tied to endometrial cancer is at www.pubmed.gov- called
"Integrated genomic characterization of endometrial carcinoma", from Nature Magazine August 2013. I don't have the pub med
number but hopefully you can find it by the title. Let me know if you can't find the article.

I also had two other gene mutations- RB1, and SF3B1.  I give them to you so you can see if they show up when you get your genomic
analysis. I had four gene mutations in total.

This is all like solving a mystery.  Good luck with your gene testing.

Takingcontrol58

MAbound
Posts: 1150
Joined: Jun 2016

I went looking at the study Eldri cited, but it's specific to ovarian cancer. I found an article printed just last month that addresses metformin and endometrial cancer specifically that those interested in this topic may find very interesting. To find the article first go to http://www.ncbi.nlm.nih.gov/pubmed/27378194, then in the upper right corner click on the full text link button, and finally on the new web page go again to the upper right corner and click on "PDF (1MB)" in the article tools box. Convoluted, I know, but its often hard to find full versions of such recent publications without a subscription to the periodicals they are printed in.

I especially perked up when section 4 stated that Metformin can induce progesterone receptor expression and recover progesterone sensitivity because I'm going to be on progesterone therapy forever following chemo. I never hear anyone mention if they were tested for estrogen/progesterone receptors as part of their staging like I was or recieving progesterone therapy and what it is like.  Any comments?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

MA, not sure how doctors look at estrogen and progesterone differently - I am sure they do, but UPSC is not a cancer that can be treated with hormones (at least estrogen) - it acts to feed the cancer - or that is what I was told.  The body recognizes highly processed soy (soy protein isolates) as estrogen and it is why I chose to read labels. 

bluehyacinth
Posts: 50
Joined: Feb 2016

I was tested for estrogen/progesterone receptors as part of my staging and I am on an aromatase inhibitor to reduce the estrogen (I have UPSC).

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Wow! Lots of info on metformin! I will have to read up some more. What is the problem for kidneys? I don't have kidney disease, but I only have one kidney.

takingcontrol58
Posts: 263
Joined: Jan 2016

Soup52,

If you have reduced liver or kidney function, you are at risk of lactic acidosis (one of the
potential side effects of metformin).  Lactic acidosis can cause:
- weakness
-trouble breathing
-abnormal heartbeats
-unusual muscle pain
-stomach discomfort
-light headedness
-feeling cold
All the side effects of metformin should be listed when you get your prescription.

One other key thing. Metformin can reduce Vitamin B12 levels- a key vitamin for the body.
I take a supplement and get a blood test every 3 months to test B12 among other things.

Takingcontrol58

MAbound
Posts: 1150
Joined: Jun 2016

Metformin isn't the only thing that can cause B12 deficiency.

After age 50 we start producing less and less stomach acid as we age and therefore have an increasingly lower and lower ability to absorb B12 from the foods we eat. Antacids, particularly proton pump inhibitors, are other drugs that interfere with B12 absorption from food, and finally chemo has been shown to potentially cause B12 deficiency by converting active B12 into its inert form.

To complicate matters, the common blood test for B12 level counts both inert and active B12 in blood without differentiating between the two. You can have a normal or even high level and still be B12 deficient because as much as 70-90% of B12 is the inert form depending on your circumstances.  There apparently is a new test called Active-B12 EIA that is more accurate, but it's more expensive and not yet covered by all insurances. 

You can read about it here if you are intested: http://www.active-b12.com/

B12 is of particular interest to us because of the neuropathy issue. We don't get tested for active B12 prior to chemo and B12 deficiency along with diabetes or pre-diabetes (BMI >35 or FBS 110-126) potentially predispose us to developing CIPN. You may find interesting an April, 2015 case study at: 

http://home.kpn.nl/hindrikdejong/chemo-B12.pdf

that showed IM B12 plus oral supplementation can have an impact on the severity of CIPN after chemotherapy and concluded it may even offer protection from CIPN if given prior to chemo. 

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

I'm on my 3rd month. 500 mg per day. Sitting at chemo right now - taxotere and avastin. Sugars are almost too low - that seems to be my worst side effect - dips to 70. But my dr said lets try it and see if you can tolerate it. Be close to a bathroom when you first try it! I take it between 6 and 8 pm and have been able to get used to it pretty quickly. I am hoping for positive maintenance results like Taking Control 58! Being PET scanned in two weeks. Will let you all know!

Billie

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

BC, I hope this works for you. Would love to see you dancing with NED!

Love and Hugs,

Cindi

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