CSN Login
Members Online: 10

You are here

Metformin Information

Beebster
Posts: 20
Joined: Feb 2017

Hello everyone - this is my first post, but I am no newbie to this board. I've followed for several months, every since I found it. Here's my history, from what I hope I posted to my personal space. I'm posting because I am experiencing a recurrence (UPSC) and metastases to my liver. I also was fortunate enough to have a second opinion from Fox Chase where the oncologist there ordered a complete tumor profile on my original surgical tissue samples. The results show that I have the same pathways as TakingControl58.  I would appreciate additional information from TakingControl58 on her metformin experience: starting dosage, maintenance dosage, how do you monitor your NED status, any additional bloodwork or tests aside from the usual CA-125? There is some very recent research published on metformin that I will post to the board when I am back at my office computer. Is anyone else using metformin? What do your oncologists have to say about it?Thanks so very much! Beebster

September 2015: vaginal bleeding, ultrasound indicates a "growth"
October 2015: D&C, pathology is endometrial cancer, mixed histology, grade 3 (UPSC components)
November 2015: Laparoscopic total radical hysterectomy(ovaries, tubes, omentum, seven lymph nodes of which only 4 were actually lymph nodes), no pelvic washing, pathology is Stage 1B, Grade 3, CA-125 is 41 at time of surgery
December 2015-April 2016: Clean CT scan, then six rounds taxol/carboplatin every three weeks
April-May 2016: 3 rounds vaginal brachytherapy
June 2016: Clean CT scan, CA-125 at 7
October 2016: CA-125 at 7, clinical visit with oncologist
December 2016: Feelings of fullness and pressure lead to request to move up CT scan (scheduled for January)
CT reveals extensive tumors in intra-peritoneal cavity, including one large conglomerate tumor bigger than the original mass in my uterus) and metastases in liver; began doxil/carboplatin chemo, infusion every four weeks, with CT scan scheduled prior to 4th infusion (which will be in March 2017) to "see how I'm doing". Hopefully stabilization and shrinkage.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2564
Joined: Mar 2013

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.   

TracyGB
Posts: 8
Joined: Dec 2016

Hi Beepster,  I currently take metformin for diabetes but hadn't heard about metformin as a treatment before.  I will check with my doctor and see what he has to say too.  If I get anything good I will let you know.  Please let me know what you find out as well.  

I am sorry about your recurrence.  I hope your treatment goes smoothly.  Keep in touch. Tracy

wendybru's picture
wendybru
Posts: 11
Joined: Jul 2016

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.

SF73
Posts: 257
Joined: Oct 2017

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.

wendybru's picture
wendybru
Posts: 11
Joined: Jul 2016

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.

takingcontrol58
Posts: 237
Joined: Jan 2016

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

Beebster
Posts: 20
Joined: Feb 2017

Takingcontrol58 - Linda! Thank you for all of the valuable information! Are your dosages determined by BMI, or some other metric? Chemo uses BMI and a forumla to calculate the "area under the curve".  I had asked my oncologist about HE4 last fall, and the response was that it is not widely used, and I would need to ask my insurance company whether they would cover the cost. (Another post here also said that their onc said HE4 is similar to PSA tests for prostate - a rising level doesn't necessarily mean uterine cancer. It could mean inflammation elsewhere in the body.)  I've seen a couple of other posts here on HE4. I will add it to my list of tests. Right now, I'm getting the usual CBC and CMP profiles, with LDH, C-Reactive Protein, SED rate, and CA-125 added.

Can I confirm that the trial that will end in 2019 is at MSKCC?

I had a 79-cancer gene panel run after my frontline treatment; no Lynch, no BRCA mutations. In meeting with the genetic counselor, she told me that they were now routinely doing genetic profiling on uterine cancers. (This is the medical center where my gynecological oncologist is [was] and where I had my hysterectomy.) My understanding is that at MSKCC, tumor profiling is done for everyone. 

Interesting to note, too, that when I asked my second-opinion onc about metformin, she wasn't recommending it at this time. It has its own side effects, she said. (I should've asked if one of those side effects was death.) I've received preliminary info on the tumor profile and am waiting on a more detailed report and discussion on the results.  I also had my Vitamin D and B-12 levels checked by my GP. D was very low, and I am on a 4-week, once a week, dosing of many thousands of units. B-12 was okay.

RECENT ARTICLES

June 2016. Elsevier's Critical Reviews in Oncology/Hematology, Metformin Use and gynecological cancers: A novel treatment option emerging from drug repositioning (Gadducci, Biglia, Tana, Cosio, Gallo, authors, Universities of Pisa and Turin    http://dx.doi.org/10.1016/j.critrevonc.2016.06.006

November 2016. Science Daily Summary: Protein that protects during stress sheds light on how diabetes drug prevents tumors. (Science Daily is a good resources for all sorts of research!) https://www.sciencedaily.com/releases/2016/11/161121161807.htm    At the bottom of Science Daily's summary you will find a link to the article. I can't claim to follow everything in the actual article, but the summary quotes the authors as saying "they've provided new insights into the epithelium-protecting an tumor-suppressive actions of one of the most widely-presecribed drugs, Metformin, which may insprie a fresh look and better designed studies to fully evaluate the benefits of this relatively cheap medication."

Thank you so very much for everyone's good thoughts.

Beebster

takingcontrol58
Posts: 237
Joined: Jan 2016

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

Beebster
Posts: 20
Joined: Feb 2017

My CA-125 was 177 in December when my recurrence/metastasis was diagnosed. It was 49 after one month on doxil/carbo. Similarly, LDH was 295 at dx, and 142 after first infusion. Third infusion is Feb. 20. I'll be requesting additional bloodwork when I have my pre-chemo draws. I'm not pregnant (!): 65, never had children, suffered from painful intercourse for several years and know now that cell atrophy is a risk factor for uterine cancer for the older, thinner woman. I also get the standard pelvic exam and pap tests. But have not had pelvic/abdominal/transvaginal ultrasounds since my initial diagnosis. Never occurred to me to use this tool. No new specimens, and I know that metastatic cancer changes the mutations. I asked whether I would get a biopsy, how did they know for sure this was a recurrence? The answer was the rapidity and location of the tumors. Intuitively I agreed that this was logical.

My 79-cancer gene panel was done by Invitae, done after all of my frontline treatment and two clean scans. I will check out Foundation One. The tumor profile of my original tissue was done by Caris Life Sciences - Molecular Intelligence Profiling, at a cost of $32,000 and change. Am contacting my second opinion gyn onc to request a meeting to discuss the report and have the report emailed to me. Also to ask her why no liver biopsy.

tripsie
Posts: 11
Joined: Dec 2016
  • 2017-02-06I have just started taking metformin at my request. my oncologist asked where i heard about it. i told her i had been reading about UPSC again and again. i also read someone's post here about a month ago. i am willing to try anything since after a year of stability Imy latest scan shows that the tumor on yop of my liver has grown a tiny bit. any bit is too much for me.
  • My oncologist said go ahead and try if you want. it wont do any damage or affect the Avastin i get every three weeks. so i am on 500mg for week one, then if I tolerzte it, I will go to 1000mg and see her in May for bloods.  
  •  
  • Can't give you any results yet, but fingers crossed.
Nellasing
Posts: 529
Joined: Oct 2016

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)))

tripsie
Posts: 11
Joined: Dec 2016

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

pinky104
Posts: 574
Joined: Feb 2013

I'm the one who posted on here a month or so ago.  I had asked my oncologist about taking Metformin previously. He asked me to talk to my PCP about it as he wasn't sure how often side effects occur.  I talked to the PA at my PCP's office and he agreed that I should start taking it, so I did.  He had read a lot of info. on it and said some of his other well-informed patients were already taking it.  I see both an oncologist at the hospital where I worked and a GYN/onc. at a different hospital where I had to have my surgery.  When I went back to my GYN/onc. the next time, I saw his nurse practitioner, not him.  I asked her what dose of Metformin I should be on, as the dose I was taking was rather low compared to the doses other people on this site were taking.  She went and asked the GYN/onc. and came back saying that he said he had tried Metformin during clinical trials on other patients and he didn't recommend it as he hadn't had any success with it during those trials.  He said I could stay on it if I wanted to, but not to expect any success with it in working to prevent a recurrence of my UPSC.  I later talked to my PA at my PCP's office about what my GYN/onc. had said.  We agreed that I would continue to take it, as it might be good for another type of cancer if it doesn't work on what I currently have.  I've gotten feedback on here from other women who have cited more recent studies in its favor.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2564
Joined: Mar 2013

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.

EZLiving66's picture
EZLiving66
Posts: 1332
Joined: Oct 2015

For what it's worth, during chemo my blood glucose went crazy, often going above 600 and I hadn't even eaten anything.  My GP said my liver was failing but pumping out glucose like there was no tomorrow (which I guess there wasn't) - my A1c was 8.5!  Anyway, after we stopped the chemo, my GP put me on 1000 mg of Metformin, gradually increasing to 2000 mg a day.  I had previously been diagnosed with T2 diabetes because my fasting glucose level was above 126 consistently although my A1c was normal (around 5.8) so was not on any medication.

It's been two and a half years since my third and last chemo and (knock on wood), the cancer (UPSC, Stage II, Grade 3) has not returned.  My oncologist/gynecologist is one of the sponsors of the metformin trials so was fine with me taking it.  

Obviously, I don't know if the metformin is the reason I'm still kicking, but like TakeControl58, I will NOT go off of it.

Love,

Eldri

Subscribe to Comments for "Metformin Information"