Metformin - My 78 year old mother's journey

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Lcmartin
Lcmartin Member Posts: 8

In the beginning of January 2016 my mother was diagnosed with high grade Serous, endometrial uterine cancer. No metastases were found by scans at this time. Surgery for a full Hysterectomy was scheduled for the middle of March 2016. A bone and CT scan just prior to surgery, revealed the cancer had metastasized to 2 vertebrae. A needle bone biopsy confirmed the scan results. Unfortunately she went from Stage 1 to stage 4, within two and a half months. Her oncologist said this was the first case of uterine cancer moving directly to the bone, without going through a soft tissue first.

 April 2016, 5 weeks after surgery, which is the time needed to heal before starting chemotherapy, new scans showed additional lesions in another vertebra, rib and femur.

Aug 2016, after 18 weeks and 6 rounds of chemotherapy, scans indicated the 5 bone lesions were stable and no soft tissue involvement. A second opinion from an endometrial oncologist at Fox Chase in Philadelphia, said if chemotherapy had been administered directly after diagnosis in Jan 2016 and prior to any surgery, most likely the cancer would have been contained to the uterus. The oncologist questioned why the 4 month delay in starting chemotherapy? Anyone newly diagnosed with Stage 1 high grade Serous uterine cancer should ask their oncologist about chemotherapy prior to surgery.

Feb 2017, after 6 months and 6 additional low doses of maintenance chemotherapy, my mother’s most recent scans indicate only one, barely visible, lesion in her vertebrae. This lesion was the largest of the first 2 lesions identified by the March 2016 scans. The other 4 lesions are now completely resolved (gone). Her orthopedic oncologist told us that the remaining lesion appears to be dead but due to the bone healing process from the Xgeva, the lesion area would still show up on the scan. He said that it's really rare, a miracle and a blessing to have these results.

It’s my opinion, besides the use of chemotherapy, her results were also from to the use of multiple things. Since “Takingcontrol58” has written about Metformin and the positive results she’s received from its use, I believe it’s important to share this information.

From the first day my mother started chemotherapy, she also started taking 1,500 mg of Metformin, the drug Xgeva, many vitamins (especially Vitamin D, B6 and B12), many supplements (most importantly Turmeric-Curcumin with Ginger and Turmerones), went on a strict cancer diet (absolutely no sugar..only Stevia), she also makes smoothies with specific organic vegetables and fruits blended with green tea daily. It’s my opinion that the Metformin, Vitamins, Supplements and diet helped tremendously. I recommend that anyone fighting cancer read the following books; “Beyond The Magic Bullet, The Anti-Cancer Cocktail”, by Raymond Chang, MD (contains information on Off Label Drugs and Supplements that are scientifically known to fight cancer) and “Beating Cancer With Nutrition” by Patrick Quillin, PHD, RD, CNS.

At this point, she is finished with maintenance chemotherapy and her oncologists are not recommending anything additional. They will be monitoring her every 3 months, with a CT and full bone scans to see if her cancer reoccurs. Knowing Serous cancer can be very aggressive, rather than waiting for reoccurrence, my mother is taking a proactive approach and will be adding additional agents to her maintenance regimen.

Takingcontrol58, is there any chance that you could please share the complete list of Supplements, Vitamins, etc. and dosages that you are currently using as a maintenance regimen? It would be really helpful to see what you are using, that may be missing from her regimen. My mother’s “Foundation One” results identified seven mutations, two in which you have mentioned having yourself. Sadly there’s only a short list of drugs approved for treating Endometrial Cancer. Out of seven mutations, only one drug is available and that’s Herceptin. Herceptin for the HER2 mutation is only available through clinical trials. I believe your experience and knowledge could benefit my mother and many others as well. If it wasn’t for reading your very first post on this Forum site in Jan 2016, we may have never discovered Metformin. So thankful that we found this site. 

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  • Nellasing
    Nellasing Member Posts: 528 Member
    edited March 2017 #2
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    Wow LcMartin

    That is indeed wonderful news!!!  So glad you shared it and I'm sure Takingcontrol58 will be along - she isn't on every day that I know of.

    Many prayers and thanksgiving for what has happened and for your journey going forward.   (((HUGS)))

  • Beebster
    Beebster Member Posts: 20
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    Metformin and Mutations

    LC, thanks for all the great info: especially your list of supplements and book titles. So far my reading of posts has metformin being used during frontline treatment. Is there anyone out there who went on metformin after a dx of recurrent and metastatic UPSC? LC, I am interested in your mother's mutations. I recently received the results of a complete tumor profiling of my original tumor tissue. No biopsies were done on the recurrent mass and scattered nodules in my peritonel cavity, or on the mets in my liver. The assumption is that it is UPSC, and the liver mets will not have mutated that far from my original tissues, per Fox Chase. I am three cycles (once a month) into a doxirubicin liposomal/carboplatin chemo regimen. My next CT scan is mid-March. Hoping for no new growth; blood counts are going in the right direction, so I am optimistic for some sort of stabilization. My onc has been honest - how long stability would last is only a guess.

    My tumor profile, done by Caris Life Sciences through my second opinion Fox Chase medical gyn onc, showed three genes with actionable mutations: PTEN, TP53, BRCA2 (BRCA2 is presumed benign, I am still investigating this). I am negative for PD-L1, and no mutation in PIK2CA, a pathway that TakingControl58 has. Still, my oncologist has told me that he has no objection to my trying metformin. I'm absolutely leaning in this direction, starting after I get the results of my next scan. 

    On supplements, my Vitamin D levels were low back at the beginning of my secondline treatment (December), so I was on a once-a-week capsule to pump those back up. My B-12 levels were out of sight, likely due to the mets in my liver.  I too would be interested in a discussion on supplement dosages and frequency. 

    I'm adding Xgeva to my list of potential treatment options down the road! Thanks to everyone who is on this board. I am sympatico with each and everyone of you. 

    Fun: http://www.dceaglecam.org/

     

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited March 2017 #4
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    LCMartin

    am so, so happy for your mother. Thank you so much for posting her results. 

    I have been trying to alert all the women on this site to the benefits of metformin. I only wish more would investigate
    and ask their doctors about this drug.  It has so many anti-cancer properties. And if you have the targets that metformin
    addresses, I think you can have miraculous results, like your mother and I did. Without any additional chemotherapy.

    I'll send you a private e-mail on the supplements I use, as the list is long. I take 44 different supplements each day, most 2X a day.

    I also take 2 low dose aspirins each day. One aspirin a day reduces your chance of any cancer by 25%.  Aspirin should be recommended
    for all cancer patients like it is for all heart patients. It thins your blood (so cancer cells can't stick together) and inhibits the COX2
    enzyme, which causes inflammation. Both these conditions can cause cancer and heart disease.

    It appears that your mother took the same approach that I did.  I believe that if you have advanced or metastatic cancer, the only way
    you can heal your cancer is to have a comprehensive cancer treatment plan, and chemo is only a small part of that plan.  You have to
    address all your health issues, boost your immune system, and target your mutations if you can (some supplements target mutations
    as well). And you do this through diet, weight loss, supplements, purified water, exercise, aspirin, reduciing intake of sugar and
    alcohol, and using drugs that are repurposed for cancer treatment, like metformin. It has already been proven to be an inhibitor of
    endometrial cancer specifically, because endometrial cancer cells have a large amount of insulin receptors on their surface.

    Also, metformin suppresses HER2 in tamoxifen resistant breast cancer (so you shouldn't worry too much about getting Herceptin).
    And metformin is alot less dangerous and doesn't cause cancer.

    I'm curious which mutations your mother had:  my four were PIK3R1, CTNNB1, RB1 and SF3B1.
    I'm so glad you used Foundation One for genomic testing. They are state of the art.  I also used Caris Research
    but they don't test as many genes and did not identify these four key genes, two which are key mutations in endometrial cancer.

    Beebster, I did not have the PIK2CA mutation. But PTEN and P53 are on the PI3K/Akt/Mtor pathway. If you have a mutation that
    activates this pathway, metformin inactivates this pathway.  What does your report say about this pathway? If your
    pathway is activated, I would ask your doctor about getting on this drug right away. PTEN is a negative regulative of the
    PI3K pathway.

    Just a note from the medical journals.  They say if you have a mutation on  the PI3K pathway (which regulates insulin),
    chemotherapy won't work on you. It makes you chemo resistant.  I believe this is why they are conducting the trial I
    was originally enrolled in, to have the metformin make the chemotherapy work better. I thank God I removed myself
    from the trial and got on metformin, since I did have a mutation that activated this pathway. They should test all women
    for these mutations as part of the initial staging process. Perhaps if you have one of these mutations (and don't know it),
    it may be the reason chemo doesn't help you.

    Takingcontrol58

  • Lcmartin
    Lcmartin Member Posts: 8
    edited March 2017 #5
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    Beebster

    Hi Beebster,

    Sorry for taking so long to respond. Metformin is currently being used in many clinical trials. Here is one; Paclitaxel and Carboplatin with or without Metformin Hydrochloride in Treating Patients with Stage III, IV, or Recurrent Endometrial Cancer. https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=758254&version=HealthProfessional&protocolsearchid=8392570

    I cannot absolutely confirm that it was Metformin that gave my mother her results, but from what I’ve researched, it could have been one of the main agents that helped. My mom was on 1,700 mg of Metformin while taking Paclitaxel and Carboplatin chemotherapy. Metformin and Advanced Bio-Curcumin with Ginger & Turmerones will remain the main items in my mother’s regimen. I really believe her results were from multiple things, such as a strict cancer diet, vitamins and supplements. Takingcontrol58 and my mother used a very similar regimen and both had similar results. I don’t believe this is coincidental. If it wasn’t for reading Takingcontrol58’s first post in Jan 2016 and watching this video https://www.survivingterminalcancer.com/, I wouldn’t have investigated Metformin or a multiple agent approach. The video is 1hr 38min long, but is worth watching.        

     Below are the results from the complete tumor profiling of my mother’s original tumor tissue. Also besides the two books I posted earlier, these additional books are also very helpful; “The Gene Therapy Plan” by Mitchell L Gaynor, MD (talks about a success story using Metformin on pg 78) and “Natural Strategies For Cancer Patients” by Russell L. Blaylock, MD.

    Tumor Type: Uterine Endometrial Adenocarcinoma (NOS)

    Genomic Alterations Identified;

    ERBB2 amplification        FDA-Approved Therapies; Ado-trastuzumab emtansine, Afatinib, Lapatinib,   Pertuzumab and Trastuzumab. Natural Inhibitors; Curcumin, Extra Virgin Olive Oil, Green Tea Extract, Apigenin, Aromatase, Gamma Linolenic Acid, Diindolylmethane (DIM), Polysaccharide Krestin (PSK), (Rhein) Anthraquinone Rhubarb, Indole-3-Carbinol (I3C).

    PIK3CA E545K     FDA-Approved Therapies; Everolimus and Temsirolimus. Natural Inhibitors; Wortmannin, Curcumin, NVP-BEZ235, Thymoquinone (Black Seed Oil), Wogonin, Quercetin, Fenretinide (Retinoid) Vitamin A,

    PBRM1 truncation exon 4              FDA-Approved Therapies; None.

    TP53 R248L         FDA-Approved Therapies; None. Natural Inhibitors; Curcumin, NVP-BEZ235, Thymoquinone (Black Seed Oil), Wogonin, Indole-3-Carbinol (I3C).

    ZNF217 amplification      FDA-Approved Therapies; None.

     

    Additional Findings; Microsatellite status MS-Stable, Tumor Mutation Burden TMB-Intermediate; 11.18, Muts/Mb