Recurrence in the liver

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Beachrose
Beachrose Member Posts: 10
edited December 2016 in Uterine/Endometrial Cancer #1

Hi, I have not posted that often here but often check in and read a lot as this board is a wonderful source of encouragement and information. So in about a month it will be one year since the end of my treatment for stage IVB grade 3 USPC. Saw my gyn/oncologist for a three month check up at the beginning of November. The exam went well however she noted that my CA125 level had increased to 46 since August when it was 13. Two weeks later it was retested and it had increased further. Had a scan which indicated a liver biopsy was necessary which I had on Nov. 30. Today my medical oncologist told me that the biopsy confirmed that my uterine cancer has spread to my liver and I have an appointment to discuss the treatment plan on Dec. 12th. I have not seen anyone post here regarding this cancer spreading to the liver. Has anyone had this experience or know anyone who has? I am hoping to get some information before my appointment next Monday.

 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    edited December 2016 #2
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    Oh Beachrose, I am sorry to

    Oh Beachrose, I am sorry to hear this.  I am sure the ladies will chime in if they know anyone with this recurrence location.  Please let us know what the plan is.  Hugs you to darling.

  • henhill
    henhill Member Posts: 123
    edited December 2016 #3
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    Moral Support

    I haven't heard of this, but I have had reccurence and am hoping for the best in your meeting with the doctor.  Praying for you to be strong.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    Liver

    I have had recurrences that have been on my liver, but not believed to be on the inside.  I hope everything goes well for you.

    Hugs and prayers, Lou Ann

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited December 2016 #5
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    Hang in there!

    So sorry to hear about you having a recurrence. That's news none of us want to recieve, but the liver is an amazing organ because it actually has the ability to regenerate itself after part is removed. I don't think any other organ in the body is able to do that; it's just a little fact that might be a silver lining to the difficult situation you are facing. I hope that works in your favor for dealing with this. Hugs and prayers. I'll be thinking of you on the 12th...keep us posted!

  • MAbound
    MAbound Member Posts: 1,168 Member
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    PS

    I remembered an article in Reader's Digest from years and years ago called "I am Joe's Liver". Here's a link to the full text:

    http://www.happyrobot.net/words/ornith.asp?r=4430

     

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited December 2016 #7
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    Liver metastasis

    Beachrose,

    I'm so sorry for your recurrence to the liver.
    I was originally diagnosed with Stage 3, Grade 3 endometrioid adenocarcinoma in Nov 2014. Two months after my hyterectomy,
    my cancer had spread all over- to my liver, spleen and outer rectum plus nodules in various places, 34cm in total.

    My integrative oncologist put me on metformin, a drug used to treat diabetes and pre-diabetes- I was pre-diabetic (insulin resistant).
    I had 2 chemo infusions then started the drug. After the 3rd chemo, 88% of all my tumors vanished, without surgery. I was down to
    4cm. Had the remaining 4 chemos and still had 2cm of tumors.  Two months later I was in complete remission. That was Aug 2015.
    Haven't had any other cancer treatment since then.

    I'm sure your doctor might discuss surgery with you.  I don't know your health status but here are a few important facts about
    the liver.  The liver makes glucose and stores iron (spleen also stores iron). Cancer loves glucose and needs iron - every cell uses
    iron to divide and cancer cells are rapidly dividing. I would suggest you ask your doctor to test your levels of insulin growth factor-1
    and ferritin (for iron). You have to try to determine why your cancer spread to the liver.  As soon as I went on metformin, which
    lowers glucose and insulin growth factor levels, my cancer started to melt away, and my iron stores dropped drastically.  Something
    feeds cancer and you have to figure out what in your own body may have made the cancer spread specifically to the liver.  You can
    cut out the tumor but you can't cut out the cancer- that was the lesson I learned.  Insulin growth factor-1 levels are usually raised
    at the diagnosis of endometrial cancer.

    I would also suggest you have genomic testing done one the iver biopsy before rushing into treatment.  Any mutations you have would
    be another missing link. Metformin also inhibits a key mutation in endometrial cancer which is caused by insulin reisistance. Metformin also restores
    the tumor suppressor p53, which is typically mutated (turned off) in USPC. Metformin also stops angiogenesis- the creation of new blood
    vessels to feed the tumor. If you have metastasis, you have angiogenesis.  Avastin is typically given to stop angiogenesis but it does not
    havea great track record and has some bad side effects. It was pulled off the market in 2010 for the treatment of metastatic breast cancer.

    What type of treatment did you have previously? Did you do genomic testing on your original tumor and know some of your
    mutations?

    Takingcontrol58 

     

  • Nellasing
    Nellasing Member Posts: 528 Member
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    So Sorry Beachrose!!!

    Truly one of the hardest things to hear I'm sure Frown  I do not have any information for you but do want you to know we'll be praying for you and will look forward to hearing your update as soon as you are ready.  (((HUGS)))

  • derMaus
    derMaus Member Posts: 558 Member
    Options

    Liver metastasis

    Beachrose,

    I'm so sorry for your recurrence to the liver.
    I was originally diagnosed with Stage 3, Grade 3 endometrioid adenocarcinoma in Nov 2014. Two months after my hyterectomy,
    my cancer had spread all over- to my liver, spleen and outer rectum plus nodules in various places, 34cm in total.

    My integrative oncologist put me on metformin, a drug used to treat diabetes and pre-diabetes- I was pre-diabetic (insulin resistant).
    I had 2 chemo infusions then started the drug. After the 3rd chemo, 88% of all my tumors vanished, without surgery. I was down to
    4cm. Had the remaining 4 chemos and still had 2cm of tumors.  Two months later I was in complete remission. That was Aug 2015.
    Haven't had any other cancer treatment since then.

    I'm sure your doctor might discuss surgery with you.  I don't know your health status but here are a few important facts about
    the liver.  The liver makes glucose and stores iron (spleen also stores iron). Cancer loves glucose and needs iron - every cell uses
    iron to divide and cancer cells are rapidly dividing. I would suggest you ask your doctor to test your levels of insulin growth factor-1
    and ferritin (for iron). You have to try to determine why your cancer spread to the liver.  As soon as I went on metformin, which
    lowers glucose and insulin growth factor levels, my cancer started to melt away, and my iron stores dropped drastically.  Something
    feeds cancer and you have to figure out what in your own body may have made the cancer spread specifically to the liver.  You can
    cut out the tumor but you can't cut out the cancer- that was the lesson I learned.  Insulin growth factor-1 levels are usually raised
    at the diagnosis of endometrial cancer.

    I would also suggest you have genomic testing done one the iver biopsy before rushing into treatment.  Any mutations you have would
    be another missing link. Metformin also inhibits a key mutation in endometrial cancer which is caused by insulin reisistance. Metformin also restores
    the tumor suppressor p53, which is typically mutated (turned off) in USPC. Metformin also stops angiogenesis- the creation of new blood
    vessels to feed the tumor. If you have metastasis, you have angiogenesis.  Avastin is typically given to stop angiogenesis but it does not
    havea great track record and has some bad side effects. It was pulled off the market in 2010 for the treatment of metastatic breast cancer.

    What type of treatment did you have previously? Did you do genomic testing on your original tumor and know some of your
    mutations?

    Takingcontrol58 

     

    Very comprehensive. Thank you

    Very comprehensive. Thank you.

  • Kvdyson
    Kvdyson Member Posts: 789
    edited December 2016 #10
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    So very sorry to hear this

    So very sorry to hear this news, Beachrose. I have not had any experience with it but wanted to let you know that I'll be sending you out very positive vibes to you on Monday. Please let us know how the appointment goes. Kim

  • cindy0519
    cindy0519 Member Posts: 173
    edited December 2016 #11
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    Not much to add other than

    Not much to add other than thinking of you! I cannot imagine how hard hearing and facing this must be!

  • Beachrose
    Beachrose Member Posts: 10
    Options

    Thank you everyone for all of your helpful and supportive responses. TakingControl 58 your message has definitely given me a lot to discuss with my doctor and I feel that now I have somewhere to start, especially with things I can do to determine why my cancer spread. Although I am not diabetic or pre diabetic I will inquire about Metformin and see what she thinks and ask about testing my insulin growth factor 1 levels and genomic testing. Did you discover all of this information through your own research? Also did you see a medical oncologist along with the integrative oncologist? Regarding my treatment after my radical hysterectomy I had six rounds of carboplatin and taxol and 3 brachytherapy sessions. I did not have any external radiation and it was never recommended to me and genomic testing was never brought up. MABound thank you for the link to Joe's liver, interesting and informative article. I really appreiciate all of your comments and help.

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited December 2016 #13
    Options

    Beachrose,
    My gynecologist is a gynecological oncologist and surgeon. She performed my hysterectomy but didn't administer the
    treatment. I see her every 3 months for follow-up exams. She has a radiologist in her office where I get pelvic,
    abdominal and transvaginal ultrasounds every 3 months along with a pelvic exam and pap test.  I'm holding off on more
    CT scans unless something suspicious shows up on the ultrasounds. She also orders all myblood tests (I combine all blood
    tests through her).  I received 6 infusions of taxol and carboplatin, which was managed by an oncologist at Sloan Kettering.
    They administered my chemotherapy. My integrative oncologist actually treated me. 

    I originally joined a trial that added metformin or a placebo to the taxol and carbo at Sloan- but then I learned of all
    its anti cancer properties and knew I had to be on this drug (which has been around since the 1950s, though in the US in 1995).
    At the first meeting with my integrative oncologist, he put me on the drug and I removed myself from the trial. The trial ends
    in 2019.  The physician who did the liver biopsy told my husband I probably had 4-6 months to live yet I was entered into a
    trial with a drug that is generic and treats one of my key drivers of EC. I believe everyone in the trial should have been given
    the metformin. I may have died if I hadn't gotten on that drug. That is not treating the patient.  Metformin also lowers estrogen
    levels- in case that is driving your cancer.  From my research, I've learned it has about 20 anti-cancer properties.

    I received no radiation because my cancer metastasized right after surgery. 

    Genomic testing is not standard protocol in cancer treatment but I think it should be for advanced or metastatic patients.
    I asked my surgeon to send in my original tumor for genomic testing- my prognosis was so dire I didn't have time to wait.
    Sloan did the liver biopsy and I asked them to dogenomic testing on that biopsy.  I had to push them to do the testing.

    I did discover all this information on my own.  I have been doing alot of research on endometrial cancer and cancer in
    general as I wanted to find out why I got cancer so I could address my underlying health issues and prevent any new
    recurrences. I wanted to live and realized that cancer treatment doesn't treat you, they treat the tumor which has nothing
    to do with your long term survival.

    I also take 44 supplements each day along with 2 low dose aspirins each day. Aspirin is a key cancer preventative and that is well known
    but oncologists don't usually prescribe it for their cancer patients. These are low cost drugs that are known to benefit cancer patients.

    Much of my research comes from the website of the National Institutes of Health - http://www.pubmed.gov. It will give you
    a wealth of information.

    Let me know if you have any other questions.

    Takingcontrol58

     

  • Beachrose
    Beachrose Member Posts: 10
    edited December 2016 #14
    Options

    Beachrose,
    My gynecologist is a gynecological oncologist and surgeon. She performed my hysterectomy but didn't administer the
    treatment. I see her every 3 months for follow-up exams. She has a radiologist in her office where I get pelvic,
    abdominal and transvaginal ultrasounds every 3 months along with a pelvic exam and pap test.  I'm holding off on more
    CT scans unless something suspicious shows up on the ultrasounds. She also orders all myblood tests (I combine all blood
    tests through her).  I received 6 infusions of taxol and carboplatin, which was managed by an oncologist at Sloan Kettering.
    They administered my chemotherapy. My integrative oncologist actually treated me. 

    I originally joined a trial that added metformin or a placebo to the taxol and carbo at Sloan- but then I learned of all
    its anti cancer properties and knew I had to be on this drug (which has been around since the 1950s, though in the US in 1995).
    At the first meeting with my integrative oncologist, he put me on the drug and I removed myself from the trial. The trial ends
    in 2019.  The physician who did the liver biopsy told my husband I probably had 4-6 months to live yet I was entered into a
    trial with a drug that is generic and treats one of my key drivers of EC. I believe everyone in the trial should have been given
    the metformin. I may have died if I hadn't gotten on that drug. That is not treating the patient.  Metformin also lowers estrogen
    levels- in case that is driving your cancer.  From my research, I've learned it has about 20 anti-cancer properties.

    I received no radiation because my cancer metastasized right after surgery. 

    Genomic testing is not standard protocol in cancer treatment but I think it should be for advanced or metastatic patients.
    I asked my surgeon to send in my original tumor for genomic testing- my prognosis was so dire I didn't have time to wait.
    Sloan did the liver biopsy and I asked them to dogenomic testing on that biopsy.  I had to push them to do the testing.

    I did discover all this information on my own.  I have been doing alot of research on endometrial cancer and cancer in
    general as I wanted to find out why I got cancer so I could address my underlying health issues and prevent any new
    recurrences. I wanted to live and realized that cancer treatment doesn't treat you, they treat the tumor which has nothing
    to do with your long term survival.

    I also take 44 supplements each day along with 2 low dose aspirins each day. Aspirin is a key cancer preventative and that is well known
    but oncologists don't usually prescribe it for their cancer patients. These are low cost drugs that are known to benefit cancer patients.

    Much of my research comes from the website of the National Institutes of Health - http://www.pubmed.gov. It will give you
    a wealth of information.

    Let me know if you have any other questions.

    Takingcontrol58

     

    Thank you again for your response. I will check out the website and it is obvious to me that I need to learn more about my disease. Seems amazing that more doctors do not make patients aware of Metformin unless there are side effects or insurance issues. Regarding the aspirin I am on blood thinners since I developed pulmonary blood clots after surgery last year so have been told I will be on them for the rest of my life and that I need to avoid aspirin, but will see of the low dose would be ok. Again thank you for all of your help! Smile

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    Options
    Beachrose said:

    Thank you everyone for all of your helpful and supportive responses. TakingControl 58 your message has definitely given me a lot to discuss with my doctor and I feel that now I have somewhere to start, especially with things I can do to determine why my cancer spread. Although I am not diabetic or pre diabetic I will inquire about Metformin and see what she thinks and ask about testing my insulin growth factor 1 levels and genomic testing. Did you discover all of this information through your own research? Also did you see a medical oncologist along with the integrative oncologist? Regarding my treatment after my radical hysterectomy I had six rounds of carboplatin and taxol and 3 brachytherapy sessions. I did not have any external radiation and it was never recommended to me and genomic testing was never brought up. MABound thank you for the link to Joe's liver, interesting and informative article. I really appreiciate all of your comments and help.

    Beachrose, after reading

    Beachrose, after reading about Metformin on this chat room I brought it up to my oncologist when I saw her last.  She said there are lots of trials going on with it and there seems to be some cancer fighting attributes they were not aware of.  (Kind of like Viagra.  It started out as a heart medicine but all the men it found it was giving them erections.  It didn't work out as a heart medicine but now used to treat ED AND (from the treatment/useful side) my friend who has a pulmonary disease takes it to open the arteries in her lungs.