Metformin, EC, Solid Tumor Panels---oh my!

Harmanygroves
Harmanygroves Member Posts: 486 Member
edited November 2021 in Uterine/Endometrial Cancer #1

Recently, a note came up in one of my primary physician's documents that indicated I'd had some sort of genetic test done, as the note said something about an increased risk for ovarian cancer (all a moot point, as they went out along with the kitchen sink!).

Anyway, this prompted me to write my doctor and ask where'd she'd gotten that information, to which she replied that she'd read it somewhere. Okay. Given I've had so so so many various appointments and tests, I started digging and realized that the "molecular" testing I'd requested many months ago contained some interesting and, as they say, "potentially clinically-relevant findings."

Here are four of the genetic mutations my tumor had:

PD-L1

PIK3CA

PTEN

Aridia

In my bumbling, googling, reading, and etc., I have read just tonight that Metformin can be very helpful with women with PD-L1 and PTEN mutations. It wasn't put that simply, believe me.

Given my A1C is 5.9, why not? I was on Metformin before. Apparently it has some anti tumor properties. Does everyone know about this, and have I just be in the dark?

Are any of the rest of you requesting to know about your tumors (I had the Provseq 523 Solid Tumor Panel)? I'm eager to hear. 

 

«1

Comments

  • oldbeauty
    oldbeauty Member Posts: 366 Member
    edited November 2021 #2
    Takingcontrol58

    Harmonygroves, read the above member's many posts on her journey.  It's quite inspiring.  She is a great believer that Metformin is her salvation.  I had to work my doctors, but I eventually got a Rx for it.  Been taking 2,000 mg per day for several years.  I've recurred in the interim but I continue to take it because it may slow down tumor growth.  I have no issues with it.  It may be the main factor in causing the daily diarrhea I suffered but 1mg of Immodium each night controls that.  I had a European doctor who once opined it's a miracle drug and should be added to the drinking water supply!  There was a clinical trial that ended a few years ago where they added Metformin to standard platin-based chemo.  I don't know the result.  I don't think it was perceived to be a game changer but I think it probably helps a portion of the population of EC sufferers.  You could be one.  Best wishes, Oldbeauty

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #3
    I read her story last night!

    Then I was all over the medical journals checking out evidence, and then I wrote my doctor. 

    She wrote back that I just need to come in, and she'll put me BACK on it. Yes, I was on it. Then, she asked me to come off it. A year and a half later,  I developed EC. Causal connection? Who knows, but it just may be that the previoux Rx was keeping my genetic mutations calmed down. 

    I feel so excited that you're also using it! I love this crowd sourcing.

    <3 Deb

     

  • cmb
    cmb Member Posts: 1,001 Member
    edited November 2021 #4
    Metformin

    I've read studies about Metformin as a possible preventative for cancer and/or recurrence, but the results seem mixed. I was already taking Metformin for Type 2 diabetes a couple of years before I was diagnosed with cancer. But on the other hand, I haven't recurred yet. So who knows? I also don't have the most common form of uterine cancer, so it may be a moot point for me.

    I've had problems with diarrhea ever since I started Metformin. About a year ago I decided to try taking one 2mg Imodium (actually the Loperamide generic) every day. I switched from morning to evening dosing, based on the findings in an article MoeKay shared on a fairly long discussion that talked about fatigue and diarrhea (see the FAQ for links). This once-a-day pill does seem to work to control the diarrhea most of the time. My PCP doctor knows that I take this and it's been added to my medications profile on my healthcare system's portal. So far, no other doctor has expressed any concern, although I'm not due to see my gastroenterologist for a couple more months.

    Takingcontrol58 has investigated and/or implemented many types of supplements and lifestyle changes. Her profile and posts are always interesting to read.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #5
    Thanks so much for weighing in!

    I'm extremely impressed when people can "take control" in any way they can, and Takingcontrol58 is a fascinating woman who did everything she could to not "live up to" her doctor's prognosis. If I met her, I'd probably genuflect, ha! (probably do that with you and most women here, to be honest). 

    I reminded myself this morning of the changes I've adopted:

    --I'm mostly eating a vegetarian diet, and have cut cream and creamers from my morning coffee. I've all but stopped eating cheese too, so dairy is nearly axed.

    --I'm routinely using an anti depressant, so I'm picking up a bit. 

    --While I'n not quite there with my green tea and tumeric regimen, I'm getting close to instituting those.

    --My stress level is coming down, down, down. While my friend has some unknowns ahead, the way I'm helping is helpful for her, and not "too much" for me. 

    --My thyroid is really a mess, 12.0 but the T 4 circulating is reasonable, so I think if I continue a very healthy lifestyle, I will "get a grip" on it.

    <3 Baby steps, I suppose. My weight is much higher than it was a year and a half ago, but that will come down in time, I think.

     

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #6
    Me too Metformin

    My A1C is also 5.9 and my Family doctor told me I could come off the Metformin.  I told her I had read studies that said it helped prevent recurrence and that I would like to stay on it.   She said I had not heard that.  She is a wonderful doctor and said absolutely.  it does make sense that high blood surgar would enable cancer cells to grow faster and spread more.  It does give me diarrhea too at 1000mg a day. I control it by only drinking one cup of coffee in the morning.  It was extremely sad for me to do this.  I loved my two cups.  But now I don't worry about leaving the house in the morning.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    Thank you!

    I appreciate hearing your experience with Metformin. I do have some unpleasant memories of my initial time on it. My thyroid and medications really mess with my personal habits in the lady's room, so the Metformin may help balance things out. We can only hope!

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #8
    Medicine is a symphony

    And we try to use all the instruments (medications) to make music and not noise when used all at once.

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited November 2021 #9
    HarmanyGroves and metformin

    I haven't posted for awhile but just read your post yesterday.  I just celebrated my seven year anniversay last month,
    still cancer free after all these years. No recurrence after my original metastases back in Jan 2015.

    There are over 6000 articles on metformin posted at pubmed.gov, on all types of cancers.  It is important to understand that the key to
    metformin working is that it lowers the key fuels that are well known to cause cancer (glucose, insulin, IGF-1, lowers estrogen) and
    targets many of the key pathways and processes involved in cancer formation (angiognesis, cancer stem cells, autophagy, the PIK pathway, which
    controls our metabolism) and many other things. And there are no successful cancer drugs for these processes.  Metformin also lowers
    thyroid hormones. Remember, the thyroid controls our metabolism. I have a large thyroid nodule I've been monitoring for seven years that
    has never turned cancerous.

    Since your A1C is 5.9, I would suggest you test your blood for insulin and IGF--1 (insulin growth factor hormone), which is a key driver of
    endometrial cancer. My A1C was over 6.0 when I was first diagnosed with cancer (pre-diabetic), but my glucose was never too high. It was
    my insulin and IGF-1 that were too high. And high IGF-1 and loss of PTEN can activate the PIK/akt/mTor  (pick) pathway which leads to
    uncontrolled cell growth.  And you have a mutation on the PIK pathway (PIK3CA) and a PTEN mutation.  My mutation was PIK3R1- a sister of your mutation
    and loss of PTEN. These can both be caused by high levels of IGF-1 hormone.  It is amazing how the cancer industry does not address the
    various types of hormones that can drive cancer- IGF-1 is one of the key ones. Probably because they can only address it with a non-cancer
    drug. If your IGF-1 is high, you have to get it in a safe range. Mine dropped in half on metformin. 

    The key to preventing cancer is to address the causes of your cancer- it's not a mutation itself that causes cancer, it's some type of toxic
    environment in which your cells have to mutate in order to survive. That's how the mutations occur. The problem is oncologists don't
    try to diagnose why you develped cancer and if you don't stop the source of the growth, you willl probably have a recurrence. I had all
    my metastases form very quickly after surgery, when my body was very toxic (though I did not know it at the time).

    Also, to avoid the gastro/diarrhea issues with metformin, it is important you get metformin ER (extended release). I was fortunate never
    to have any of these issues and still remain on metformin.

    If you have read my posts, you also know that I take two low dose aspirins/day- aspirin lowers your risk of cancer by 25%- best known 
    anti-inflammatory, which is a key driver of the cancer environment. Also a key driver of Covid-19.  You should regularly be testing
    your ESR SED rate (total body inflammation) and CRP (c-reactive protein) to measure you inflammation levels.

    Just remember, metformin wasn't the only thing that I used. Cancer is a systemic issue so no one drug can cure cancer. But you can
    heal cancer. I had another toxin in my body called iron- (ferritin)- ferritin is another major driver of cancer yet the oncologists don't
    even know this or measure it. People who get multiple blood infusions usually have very high levels of ferritin and often don't make it.
    Too much iron is very damaging to the body.

    I'd be happy to answer any additional questions that you have.

    Takingcontrol58

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    Hey there, Takingcontrol58!

    Thanks so much for "weighing" in. I use that phrase because I think my weight, and causes of weight gain, have pushed my body into cancer mode.

    Also, I think that you are absolutely nailing it--the root causes of cancer must be addressed, and I've been doing as much reading and researching as possible to try to figure out why my "hormone-driven" cancer surfaced.

    I know the following is repetitive, and I've written much of this above, but as much for me as for other readers, these issues are on my personal front burner:

    -- extreme inflammation in my body, caused by severe stress

    -- post menopausal

    --I gained weight fast after menopause, but was getting a handle on it with distance walking, Metformin, and Wellbutrin, but then, my new doctor took me off Metformin (she said A1C didn't merit using it) and then I went off Wellbutrin (may be a causal connection between discarding those meds--stopping the Metformin may have jump started the problems with gene mutations? just a theory)

    --I have those genetic issues (the four above) anyway, but I think I helped create an environment for things to go south.

    --Dairy and meat - I'm now mostly completely off these. They are a rare addition to my diet. I was heavy on dairy before, but no longer. Meat is only chicken, and I do have some fish as well.

    My new mantra is "Remember Your Why"--nothing original, but helpful when I'm avoiding dairy, meat, carbohydrate, sugar, etc. 

    * * * * *

    Currently, I'm tailoring my life to turn down the volume on stress, and while I know I'm a high-intermediate risk for recurrence, I'm striving to do everything I can to avoid that. Your information and holistic approach, along with sharing what you've done, are exceptionally helpful.

    I'm eating a lot of vegetables and fruits these days, along with some quinoa and healthier grains. I would say I'm 99 percent off processed foods, and working toward a longer fasting window between 7 PM and noon the following day (although I admit to some coffee with Nutpods).

    I'm working at a less acidic system, and will be adding in more massage and accupuncture, and less time at the oncology clinic. It's as much a mindset as it is a science lab, I think.

    Your recommendations are all extremely relevant to me, and I am so grateful for every word you've shared. I CAN affect change in my personal environment and my body. I CAN use appropriate supplements, such as baby aspirin and Vitamin D! I CAN eat spinach like Popeye himself!

     

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #11
    Perspective

    We have to remember that not all diabetics get cancer, and not all healthy eaters avoid cancer.  A human body has 37 trillion cells.  They copy themselves and sometimes they make a mistake.  Our immune system kills those cells.  But sometimes the mutation fools the immune system.  Eating healthy is wonderful, but I always remember those who did everything right, and they still got cancer.  

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #12
    I Can Read Their Stories

    And know they did everything right, and it wasn't enough. 

    That said, I'm going to do what is in my power. That's all any of us can do. 

    Most of the women in here are intelligent, and no one would suggest that all diabetics get cancer, nor would any suggest that eating right works for everyone all the time. Syllogisms don't always work, nor do generalizations. I get that. I think most here do. 

    And then there's the starfish on the beach story, right? Why should I throw the one starfish back into the sea, when I'm surrounded by a million starfish I can do nothing about? I'm not going to focus on things I can do nothing about. I'm going to take the actions I can, and if I can make myself healthier, or make myself think I'm healthier (and thus, make myself happier), why not?

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited November 2021 #13
    Can We Please Have These Conversations?

    Lately, it feels like when someone wants to discuss what they can or are doing to improve their health following frontline treatment they get shut down by someone who doesn’t get their need to vent or learn more about this aspect of what happened to them. It feels like there is this divide between those who’ve had the common form of uterine cancer (hormone sensitive) vs those who’ve had the rarer types (non-hormone driven). They are two very different animals and perhaps it’s a lack of understanding of how our coping needs perhaps differ from each other that’s driving these misunderstandings.

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #14
    Perspective

    I am adding perspective, as there are lots of women who might be blaming themselves needlessly.  Yes do everything we can to prevent a recurrence. I AM taking Metformin.   But cancer is an equal opportunity disease.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #15
    Thanks for this

    I started this thread so we could have conversation about Metformin, hormones, supplements, and dietary choices--all conversations that arise from "free will" decisions of women who are doing what they can to improve their health. 430 people have read this conversation so far, so it's relevant.

    I'm sure that many women with hormone-driven cancer will be grateful to read this thread, especially Takecontrol58's story. Thank you to all who weigh in with information about what they are doing to improve their health. Also, the women with rare, aggressive types of cancer are always welcome to contribute to discussion I've initiated, understanding that those with endometrial adenocarcinoma who battle diabetes, thyroid issues, weight issues, and genetic mutations may be a different breed of cat. And of course, there is some overlap, as I know some women here with serous cancer also deal with those issues. We should be able to converse, with the always-present knowledge that, as Forherself noted, sometimes it won't matter what we do, and it's not our fault if we get cancer (that's a paraphrase). 

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited November 2021 #16
    This is what I'm talking

    This is what I'm talking about. It's this focus that somehow discussing the risk factors for hormone driven uterine cancer somehow casts blame and shames people into thinking that something they did or didn't do caused their cancer. This an extrapolation I can't accept. Most of us never had this cancer (hormone driven) on our radar before our diagnosis because of lack of education about it even when it should have been obvious to our doctors that we had more than one of the risk factors. It causes strong feelings that we have to cope with for a long time. After the fact, it is empowering to be aware of them and a relief to discuss them with others. There is knowledge to be shared on this topic, but it's hard to do that when the conversation goes off on this particular tangent and gets shut down. It makes it intimidating to anyone who comes down the road to initiate a thread on the topic when it concerns them for fear of causing unintended offense. Deb, or anyone else, should not be made to feel like she has to defend what she is doing or seeking information about from others on this board. This is what we are here for.

    I understand that you think you are adding perspective, but in fact it's more that you are making suppositions and generalities that are certainly plausable, but not necessarily or in all cases true. It feels like words are failing me these days that I can't seem to convey that these discussions are not intended to hurt, but are needed and helpful. I've said it before and I'll say it again, what gets shared on this site rarely helps everyone, but often helps someone. We need to give people the benefit of the doubt as far as their intentions go.

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    edited November 2021 #17
    Forherself, well said.

    We get enough generalizations and blame the patient from some of our doctors. Generalizations and/or medical advice from someone with no MD should be taken with a BLOCK of salt, especially with our vulnerable population. We all walk a fine line recounting our own experiences, the good, the bad, the ugly, in order to provide an extra resource for those seeking support. Our ACS terms and conditions says that directly advising others on their medical care violates their terms of service. Several posts lately certainly either cross that line or come very close to it, especially when some posts make questionable assertions and reports them as facts, or when we have people coming here to push $2500 magic bubble machines. As many of us have said before, cancer doesn't discriminate, young, old, fat, skinny, good diet, poor diet, fit or couch potato. We all try to mitigate our risks, if possible. I still laugh at Eldri's comment about her eating mint chocolate chip ice cream!

    Denise

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #18
    Bubble Machine Comment

    Just a side note: I was very discouraged when a member with a name remarkably similar to the Bubble Machine seller was allowed to promote that 2500-dollar item, and saddened to think that people would be drawn in.

    On the other hand, we all glady and generously share our medical treatments and medications, including radiation treatments and chemo therapy / immunotherapy regimes. I hope we can always do this. 

    Love to all--and let's take a deep breath. Thank you to all. 

  • SF73
    SF73 Member Posts: 317 Member
    edited November 2021 #19
    Thank you for this discussion

    Thank you for this discussion! I am one of those people who feel empowered with the knowledge of lifestyle changes to reduce the odds of recurrence. Here is to hoping that we will have a chance to discuss these things openly, share strategies and maybe run our own clinical studies :) Wouldn't that be nice. 

     

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    You're welcome!

    I just clicked your name and read your story. I am impressed at the changes that you made in your diet, and I'm currently working on the same, although truth be told, yesterday I had an interesting talk with a "heath coach." She asked me how many cans of soda I drank in a week. Zero. How much alcohol. Zero. How much money spent per week on meals out. Um, typically none. How much time in the day did I spend sitting? um, five minutes or ten minutes here and there, but mostly on my feet.....

    At this point, I'm fine-tuning and tweaking my habits to get healthier. I have such a touchy system that eating fruit in a stand-alone way gives me hot flashes! jeez Louise, an apple! So, anyhow, in reading your story, I am nodding my head in agreement with your observation that intermittent fasting caused some issues for you, but can you elaborate a little on that? I find that just "fasting" (avoiding bites, licks, tastes) between meals is about right for me! I'm working at lots more greens. One of our members in here shared a cookbook title that I ended up purchasing via Amazon, although much of it is free online through Fred Hutch, and here's a link to read about the great program put together with Ann Ogden Gaffney.

    https://www.cookforyourlife.org/about-us/

    I love to cook, and I was so grateful to learn about this program and this cookbook. Like you, I'm aiming for moderation, health, and joy. Some days are easier than others. 

  • Dak82
    Dak82 Member Posts: 109 Member
    edited November 2021 #21
    Just read this

    Reminds me of the conversation we had earlier. For many of us having some sort of control over our situation is as important as the medical treatment itself. So I totally get Deb's desire to tweak her lifestyle. I have read a number of books, I.e., Chris Beat Cancer, and they are all about diet and supplements. Because I am still in treatment my doctors discourage any kinds of supplements but I never took more than multi-vitamins anyway. I have not returned to the all plant and veggie diet I embarked on this summer before my unfortunate experience with a small bowel obstruction--I basically starved for 9 days and lost 8 lbs--from 120 to 112. My oncogists first reaction was to fatten me back up. Not sure why exactly since I wasn't yet in any danger of sudden, unexplained weight loss. But my scan 2 weeks after getting out of the hospital was the first one that had any positive response to the dostarlimab. Since then the changes have continued to be mixed but growth rate of large tumors in lungs has slowed dramatically to a few mm every few months. But they are still growing and one in my upper chest--actually on the chest wall in the pleural space is 5cmx3cmx5cm--in a space that's only .5mm wide. So I'm getting persistent pain that we will try to mitigate with SBRT if my insurance company and the treatment center ever get their act together on the referral process!

    this past week I "celebrated" a full year battling this thing and if I can find something that helps me take control of tumor growth I will. I'm a great fan of our medical capabilities in this country but it all revolves around medicine and expert opinions. The experiences of regular people are also important. I repeated my starvation diet story of the past summer because I just read a short report on the possible efficacy of monthly 4-5 day fasts that showed fascinating results in tumor growth. I will post the link when I find it again. Deb, I too have dabbled in intermittent fasting but working out in the morning, when I still have energy makes me break the routine too much. So I might have a go at the 4-day fast every month, because at this point, what have I got to lose?

    I love that we can have these discussions! And Deb 2 I wish I had your PD-L1 mutation. It's a key indicator, should you ever need it, that your cancer will respond to the immune checkpoint inhibitors like Keytruda and dostarlimab. And my cancer isn't hormone driven--my ER and PR were both 3! I am adding my name to a database being built by a former USAF member who worked in the same Titan II ICBM system I did in the 80s. The levels of toxic chemicals we were "allowed" to be exposed to were 10-100 times more than OSHA permits today. I will post that as well if anyone is interested. Since our cancers are mostly caused by some environmental factor it's an intriguing argument.

    we are driving to TX from UT right now--a short 23 hours!--which likely explains the length of my post. It's the start of the holidays and I hope all of you have wonderful plans! Hugs to all!

    Deb 1