Looking for stage IV survivors?

Darla's Mom
Darla's Mom Member Posts: 12 Member

I was diagnosed in October with IVB high grade serous adenocarcinoma. Underwent radical hysterectomy

I am facing chemo now.

My surgeon believes that I can survive this. Statistics tell me differently. Indeed the medical oncologist I met with told me that I have a 20% chance of survival within 5 years. They are only recommending chemo -  Paclitaxel and Carboplatin for 6 rounds. I feel like I am getting mixed messages here.

Since this began, my life has been put on hold.  

 

 

 

«1

Comments

  • txtrisha55
    txtrisha55 Member Posts: 693
     

     

    While I have not survived stage 4, I have survived stage 3 carcinoma sarcoma uterine cancer.  There are other ladies that have survived stage 4 on this site.  No doctor can tell you what your expiration date is.  I freaked when I was told I had cancer and went on the internet.  It stated I had 20% of 5 years with a higher grade and stage of this cancer.  I am a 6 year survivor with no recurrence.  I had 6 rounds of carbo / taxol chemo and no radiation.

     

    It all depends on your outlook.  Are you ready to do everything to fight this or going to sit back and follow only you drs advice?  I talked with the ladies on this site, talked with nutritionist, read cancer books, read information on the National Cancer Institute site, changed my eating habits, started taking different supplements like turmeric/curcumin, you have to be your own advocate.  Ask questions, if you do not like the answers, find a second opinion.

     

    There is no one that can tell you what your expiration date is, except the One.  Do not read the internet as it is out of date.  As others will tell you, You are a statistic of One.  Each cancer is different, each treatment is different, and each person is different.

     

    You are not alone as there are more ladies and caretakers on this site are here to support you and give you their stories.  Wishing you all the best. trish

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    Dear Darla - please don't

    Dear Darla - please don't read statistics, you are a statistic of ONE.  I am betting there is no 'expiration' date stamped on the bottom of your foot - so go with your surgeon.  As for the chemo, that sounds like what almost all of the ladies here went with (some also had radiatiion and we talk about that a lot on some of the threads)

    You are not alone and will be welcomed with open arms here.  Please don't hesitate to ask any question, the women here are pretty awesome.

    Also, since your doctor seems pretty open to things, see if he is interested in you participating in this clinical trial:

    https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?q=endometrial&loc=0&rl=1&id=NCI-2013-02284&pn=1&ni=10

  • ckdgedmom
    ckdgedmom Member Posts: 166
    edited December 2017 #4
    I have Stage 4 UPSC

    I have Stage 4...

    I had a fully hysterectomy Nov 2016 and 6 rounds taxol/carboplatin, 25 rounds external beam radiation to pelvis/abdomen, 3 brachy therapy treatments and and additional 30 rounds radiation to my neck along with 4 rounds of cisplatin...I had positive lymph nodes in my abdomen by my aorta and 2 positive lymph nodes in my neck near my corotid artery.

    tomorrow I find out if the treatment to my neck worked...the area in my pelvis was clear in September

    My radiology oncologist told me not to visit "Dr. Google" and to not look at statistics. He reminded me that the studies on there are old...that many women who get this are older than me (I am 53) and are not as healthy as I am.

    One of my closest friend's mom had UPSC 20+ years ago and she was Stage 4. She's the healthiest woman I know. No reoccurance (and her story of her internal treatment is hair raising...).  I told my radiology oncologist about her and I said "I think she could stop an avalanche with her bare hands and cancer wouldn't dare mess with her again" and he said "and cancer will not mess with you again"...I believe him

    and tomorrow I hope and pray with all my heart that he is right...

  • evolo58
    evolo58 Member Posts: 293
    I am, too. I will raise

    I am, too. I will raise (still another) bottle of water in your honor if you do. Really hoping this is fantastic news, and you can rest a little.

  • ckdgedmom
    ckdgedmom Member Posts: 166
    evolo58 said:

    I am, too. I will raise

    I am, too. I will raise (still another) bottle of water in your honor if you do. Really hoping this is fantastic news, and you can rest a little.

    Thank you evolo58

    thank you so much

    I.am.terrified.

    But I trust my doctors and I have faith that what they did has worked...my doctor's name is Angel...how can I miss?

  • pinky104
    pinky104 Member Posts: 574
    Stage IVb Survivor

    You're not alone.  I was first diagnosed with UPSC (high grade serous adenocarcinoma, like yours) in the spring of 2010.  I had surgery and six rounds of Carboplatin and Taxol, which I finished in Sept., 2010.  I had some pain in 2014, and a mass was found in me that was too small to biopsy.  My GYN/onc watched it for a year with CT scans and a PET scan and decided that since it hadn't grown, it couldn't be cancer.  Well, this year it grew rapidly, wrapped itself around my ascending colon, and I had surgery and chemo again.  I started out with Carboplatin and Gemzar the first week, then did Gemzar alone the second week, and had the third week off, except for labs.  I had to have some of my chemo postponed because of low white blood cells, platelets, or hemoglobin, and on some visits I had to have lower doses.  On my next to last round, I had an allergic reaction to Carboplatin (the 11th time I had it over the years) and had to switch to Cisplatin and Gemzar in my final round.  I am again in remission.  My GYN/onc said I'd be lucky to have another 5 year remission, although the last one was almost 7 years.  I'm now trying Turmeric/Curcumin and taking Metformin although I am not a diabetic.  I was found to have 6 mutations in genomic testing done by Foundation One on the tissue that was taken out of me the last time I had surgery.  A member of this board, who knows a lot about mutations from reading medical journals, TakingControl58, told me that Metformin would work on 4 of them.  My PA at my family doctor was familiar with some of the studies on Metformin and agreed to let me try it.  I started it last week.  I hope it will keep me from having another recurrence or at least prolong the time until I get one again.  I'm one of the lucky ones who doesn't have a lot of symptoms when I get cancer so it tends to sneak up on me, but so far at least, I respond well to treatment.  We're all a bit terrified when we start out on this journey, but don't panic. You may get through it relatively easily. Not that it's all easy, but I expected so many more problems than I had.  Ask your doctor to give you Emend so you don't get nauseous, and that's a big part of the battle.   There are a number of stage IV survivors on this website. Good luck to you. 

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member
    edited December 2017 #8

    Dear Darla - please don't

    Dear Darla - please don't read statistics, you are a statistic of ONE.  I am betting there is no 'expiration' date stamped on the bottom of your foot - so go with your surgeon.  As for the chemo, that sounds like what almost all of the ladies here went with (some also had radiatiion and we talk about that a lot on some of the threads)

    You are not alone and will be welcomed with open arms here.  Please don't hesitate to ask any question, the women here are pretty awesome.

    Also, since your doctor seems pretty open to things, see if he is interested in you participating in this clinical trial:

    https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?q=endometrial&loc=0&rl=1&id=NCI-2013-02284&pn=1&ni=10

    Please Don't -

    NoTimeForCancer-

     

    Thank you for your kind words and support. Finding this group has been a godsend. I have felt so alone since this began.

    It looks like I am not a candidate for this clinical trail as I don't meet the inclusion criteria for the measurable lesion at this time. I will bring this up to my gyn onc to see if she will put me on metformin regardless.

    I am not afraid of the chemo. I am terrified that the chemo won't work and this may all be for nothing. I am going to go forward and fight this with everything I have.

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member
    edited December 2017 #9

     

     

    While I have not survived stage 4, I have survived stage 3 carcinoma sarcoma uterine cancer.  There are other ladies that have survived stage 4 on this site.  No doctor can tell you what your expiration date is.  I freaked when I was told I had cancer and went on the internet.  It stated I had 20% of 5 years with a higher grade and stage of this cancer.  I am a 6 year survivor with no recurrence.  I had 6 rounds of carbo / taxol chemo and no radiation.

     

    It all depends on your outlook.  Are you ready to do everything to fight this or going to sit back and follow only you drs advice?  I talked with the ladies on this site, talked with nutritionist, read cancer books, read information on the National Cancer Institute site, changed my eating habits, started taking different supplements like turmeric/curcumin, you have to be your own advocate.  Ask questions, if you do not like the answers, find a second opinion.

     

    There is no one that can tell you what your expiration date is, except the One.  Do not read the internet as it is out of date.  As others will tell you, You are a statistic of One.  Each cancer is different, each treatment is different, and each person is different.

     

    You are not alone as there are more ladies and caretakers on this site are here to support you and give you their stories.  Wishing you all the best. trish

     

    Thank you Trish

    Thank you Trish

    I haven't yet found the national cancer institute or heard of any supplements to date.  I will definitely look at tumeric/curcumin.  Do you have any research you can point me to for supplements?

    I am just learning to be my own advocate. Up until this past week, I thought I had no voice in how my treatment would take place. 

    I love that tat. 

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member
    evolo58 said:

    Statistics (shakes head)

    Well, it's interesting you got a 20% statistic. I got a lower one, and I have the same clinical diagnosis. I think I like your surgeon better.

    Statistics can be really misleading. Most are based on data from several years ago .... some as long ago as the 90s! Even ten years ago, treatments could be very different. Our disease was really only separated from the usual adenocarcinoma and more-extensively studied since the 80s. I find it really difficult to separate more-recent findings from older ones sometimes, but from what I can glean, things have improved noticeably since the early days. 

    These statistics include women who refused any sort of treatment. those of an advanced age who died from other causes (though the cancer probably didn't help things any), those who had other complications (very, very unfortunately), those without access to adequate facilities (very unfortunately as wel), and of course, those who underwent treatments 10-15 years ago that turned out to not be as effective for Stage 4s, such as radiology only. It also includes women with pre-existing conditions that complicated their treatment. These statistics are like a thicket.

    Each person is different. 

    Some more-recent studies have attempted to separate these factors, and survival statistics vary. Some are actually promising. I have seen the 20% figure you cited here from one more-recent study, though it took only one or two more factors into account. Considering that some older ones were much lower (even lower than the one I got), this is an improvement. EVERY percentage point upward is an improvement!

    I have heard of people with other stage-4 cancers (some with even lower percentages) who are still alive and kicking way past five years. There are several women here with the same cancer we have, as well as Stage 4 ovarian and peritoneal cancers that pretty much have the same statistics we do, who passed the five-year mark and beyond.

    And yes, it's confusing and annoying. I sometimes wonder if certain doctors and medical staff know what they're talking about sometimes, judging from the posts here!

    I think the key is to keep on keeping on. Realize statistics for what they are, try maintain a positive attitude, don't quit, and push for that five-year+ goal. It is difficult. It is NOT impossible.

    EDIT ... One big thing IS a postive attitude. Even the onco nurse told me that.

    And make no mistake ... this disease is a nasty beast. Recurrences often happen. We will always have to be vigilant and catch any problems early. While there is no cure, there can be maintenance.

    Someone here posted something really interesting about stastistics. I'll see if I can't find that post.

    EDIT AGAIN ... Here it is:  https://csn.cancer.org/node/211307 . And please realize that treatments have improved since 2011, when this thread came out.


    Damned Statistics

    Thank you for responding. Your post is enlightening.  I didn't realiuze that the statistics and the patients they were measuring was so out of date.

    Why the heck do professionals inform patients of this statistic when they know i the data is outdated without any explantion of the data behind it?  I have a much better perspecgtive. This is why my surgeon is optimistic. We may not be cured, but we will do everything to survive this.

     

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member
    edited December 2017 #11
    ckdgedmom said:

    I have Stage 4 UPSC

    I have Stage 4...

    I had a fully hysterectomy Nov 2016 and 6 rounds taxol/carboplatin, 25 rounds external beam radiation to pelvis/abdomen, 3 brachy therapy treatments and and additional 30 rounds radiation to my neck along with 4 rounds of cisplatin...I had positive lymph nodes in my abdomen by my aorta and 2 positive lymph nodes in my neck near my corotid artery.

    tomorrow I find out if the treatment to my neck worked...the area in my pelvis was clear in September

    My radiology oncologist told me not to visit "Dr. Google" and to not look at statistics. He reminded me that the studies on there are old...that many women who get this are older than me (I am 53) and are not as healthy as I am.

    One of my closest friend's mom had UPSC 20+ years ago and she was Stage 4. She's the healthiest woman I know. No reoccurance (and her story of her internal treatment is hair raising...).  I told my radiology oncologist about her and I said "I think she could stop an avalanche with her bare hands and cancer wouldn't dare mess with her again" and he said "and cancer will not mess with you again"...I believe him

    and tomorrow I hope and pray with all my heart that he is right...

    Dr Google

    ckdgedmom  - You and I are the same age.  I will pray that you get good news on the success of your treatment today.

    My surgeon is optimistic. It is the medical oncologist that was delivering the outdated statistic to me.  

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member
    edited December 2017 #12
    Survivors

    Pinky104 - I am so sorry that we had to meet this way.  Your story is an inspiration to me. 

    How were you able to get the genomic testing? Did you request this thru your oncologist or your family doctor? I am also going to ask about metformin.

  • takingcontrol58
    takingcontrol58 Member Posts: 264 Member
    Survivor of metastatic EC

    Darla's mom,

    I was staged with Stage 3, Grade 3 endometrioid adenocarcinoma in November 2014, after my hysterectomy. Two
    months later, cancer metastasized all over my body (liver, spleen, vaginal cuff/outer rectum, nodules on lungs,
    outer colon and spleen). This was before I was to start treatment. My husband was told I had 4-6 months to live.
    You can read my entire story posted on January 10, 2016 (NED from Stage IV metatastic endometrial cancer).

    I entered the trial "No time for cancer" mentions, a placebo or metformin with Taxol/Carbo- I had two chemo
    infusions of Taxol/Carbo and met with my integrative oncologist-he immediately put me on metformin and I
    removed myself from the trial.  Defintely talk to your doctor about getting on the drug. You don't need to be in
    a trial to get on this drug and being Stage IV, you don't have time to lose. It is a miracle drug if 
    you have the right gene mutations and health conditions that it targets. After one month, I went
    from 34cm of tumors to 4cm. 5 months later I was completely cancer free and have been so ever since. It has now
    been over 3 years. I remain on metformin today. Also, I never had any radiation treatment, just six infusions of
    Taxol/Carbo. When I finished the chemo, I still had 2cm of tumors remaining, which vanished a few months later.

    I highly recommend the first thing you do is have your surgeon send a tumor specimen to Foundation One for genomic
    testing. It is good to do this when you are first diagnosed as cancer treatment mutates our genes and can cause new
    mutations. It is so important to understand what is driving your cancer-  As you can see from Pinky's post it turned out that
    metformin targeted 4 of her 6 mutations.  Metformin targets many of the mutations and health conditions that lead to endometrial
    cancer. If you have mutations that metformin targets, you might be one of the lucky ones.  Metformin targeted 3 of my 4
    mutations and I have remained in complete remission from a death sentence.  I'd be happy to analyze your genomic
    testing report when you receive it. I have been researching this cancer for over 3 years now.

    I also remain on 45 supplements that I began 2 1/2 years ago.  They were all recommended by my integrative oncologist.
    A good book to get you started is called "Natural Strategies for Cancer Patients" by Russell Blaylock.  You will learn alot about
    supplements and cancer treatment.  I started on DHA (fish oil) before starting the chemo- it is supposed to help prevent side
    effects from the Taxol.  I never had any major side effects. You can also read the book published by my integrative oncologist
    called "The Gene Therapy Plan" by Mitchell Gaynor.

    I'll be happy to let you know the supplements I use but you should work with your own naturopath or integrative oncologist
    to make sure you get the vitamins and supplements your body needs. Dr. Gaynor's book lists the key supplements he 
    recommended for his patients with cancer- I'm on all of them but two.

    You also need to be checking certain blood markers.  Vitamin D is critical and if you take metformin, you will need to
    supplement with Vitamin B12, as it can lower levels of this important vitamin. Can you let me know any health issues you have?
    This is what you have to focus on. All the things that led to your cancer- underlying health issues, gene mutations, diet, weight.
    You have to work on getting your body back into balance. Focusing on a healthy, organic diet is one of the first things I did when
    my cancer metastasized- organic fruits and vegetables and grass fed beef and organic chicken. Think clean food and purified water. 

    I would also recommend you talk to your doctor about taking two low dose aspirins /day.  Aspirin reduces your chance of any
    cancer by 25%.  I have also been taking two low dose aspirins along with the metformin.

    You have to take control of your own health if you hope to survive advanced or metastatic cancer. You have to do
    your own research. I can give you a list of many good web sites, some on integrative health and some from the standard
    medical community. The best website is the site of the National Institutes of Health - www.pubmed.gov. This is where
    they publish all the medical journal articles.  Doctors use this site only I don't think most of them really do all their homework.

    Also, I don't believe you can ever cure cancer.  You have to heal cancer.  If you body becomes conducive for cancer to
    grow, it will return, just like when we get a cold or the flu. You are never cured, but when your body gets run
    down again, you get another cold. And your body heals again.  It is our own body that keeps us free of all diseases.
    But it has to be in working order to do so. 

    If you have alot more questions, you can e-mail me.

    Takingcontrol58

     

     

     


     

  • pinky104
    pinky104 Member Posts: 574

    Survivors

    Pinky104 - I am so sorry that we had to meet this way.  Your story is an inspiration to me. 

    How were you able to get the genomic testing? Did you request this thru your oncologist or your family doctor? I am also going to ask about metformin.

    Genomic Testing

    I requested the genomic testing through my GYN/onc.  At the time, he told me I couldn't be tested until I'd completed all my chemo for my second bout of cancer.  I was waiting for that to happen when I got a letter from Foundation One, the outfit that does the genetic testing, that made it sound like the testing was in progress.  It turned out he'd sent a sample of the tissue that was removed from me during surgery to Foundation One about three months after my surgery.  It costs $5,800, and I don't know yet if my insurance has paid for it, but Foundation One made it sound like they would probably pick up the cost if my insurance didn't. I know my insurance has rejected it at least once (and I have excellent insurance) and Foundation One was going to go through the process of resubmitting it.  I haven't heard any more.  Foundation One sent me a form to complete where I had to list my income when they sent me the initial letter. 

    I hope the Metformin works for you (and me!).

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member

    Survivor of metastatic EC

    Darla's mom,

    I was staged with Stage 3, Grade 3 endometrioid adenocarcinoma in November 2014, after my hysterectomy. Two
    months later, cancer metastasized all over my body (liver, spleen, vaginal cuff/outer rectum, nodules on lungs,
    outer colon and spleen). This was before I was to start treatment. My husband was told I had 4-6 months to live.
    You can read my entire story posted on January 10, 2016 (NED from Stage IV metatastic endometrial cancer).

    I entered the trial "No time for cancer" mentions, a placebo or metformin with Taxol/Carbo- I had two chemo
    infusions of Taxol/Carbo and met with my integrative oncologist-he immediately put me on metformin and I
    removed myself from the trial.  Defintely talk to your doctor about getting on the drug. You don't need to be in
    a trial to get on this drug and being Stage IV, you don't have time to lose. It is a miracle drug if 
    you have the right gene mutations and health conditions that it targets. After one month, I went
    from 34cm of tumors to 4cm. 5 months later I was completely cancer free and have been so ever since. It has now
    been over 3 years. I remain on metformin today. Also, I never had any radiation treatment, just six infusions of
    Taxol/Carbo. When I finished the chemo, I still had 2cm of tumors remaining, which vanished a few months later.

    I highly recommend the first thing you do is have your surgeon send a tumor specimen to Foundation One for genomic
    testing. It is good to do this when you are first diagnosed as cancer treatment mutates our genes and can cause new
    mutations. It is so important to understand what is driving your cancer-  As you can see from Pinky's post it turned out that
    metformin targeted 4 of her 6 mutations.  Metformin targets many of the mutations and health conditions that lead to endometrial
    cancer. If you have mutations that metformin targets, you might be one of the lucky ones.  Metformin targeted 3 of my 4
    mutations and I have remained in complete remission from a death sentence.  I'd be happy to analyze your genomic
    testing report when you receive it. I have been researching this cancer for over 3 years now.

    I also remain on 45 supplements that I began 2 1/2 years ago.  They were all recommended by my integrative oncologist.
    A good book to get you started is called "Natural Strategies for Cancer Patients" by Russell Blaylock.  You will learn alot about
    supplements and cancer treatment.  I started on DHA (fish oil) before starting the chemo- it is supposed to help prevent side
    effects from the Taxol.  I never had any major side effects. You can also read the book published by my integrative oncologist
    called "The Gene Therapy Plan" by Mitchell Gaynor.

    I'll be happy to let you know the supplements I use but you should work with your own naturopath or integrative oncologist
    to make sure you get the vitamins and supplements your body needs. Dr. Gaynor's book lists the key supplements he 
    recommended for his patients with cancer- I'm on all of them but two.

    You also need to be checking certain blood markers.  Vitamin D is critical and if you take metformin, you will need to
    supplement with Vitamin B12, as it can lower levels of this important vitamin. Can you let me know any health issues you have?
    This is what you have to focus on. All the things that led to your cancer- underlying health issues, gene mutations, diet, weight.
    You have to work on getting your body back into balance. Focusing on a healthy, organic diet is one of the first things I did when
    my cancer metastasized- organic fruits and vegetables and grass fed beef and organic chicken. Think clean food and purified water. 

    I would also recommend you talk to your doctor about taking two low dose aspirins /day.  Aspirin reduces your chance of any
    cancer by 25%.  I have also been taking two low dose aspirins along with the metformin.

    You have to take control of your own health if you hope to survive advanced or metastatic cancer. You have to do
    your own research. I can give you a list of many good web sites, some on integrative health and some from the standard
    medical community. The best website is the site of the National Institutes of Health - www.pubmed.gov. This is where
    they publish all the medical journal articles.  Doctors use this site only I don't think most of them really do all their homework.

    Also, I don't believe you can ever cure cancer.  You have to heal cancer.  If you body becomes conducive for cancer to
    grow, it will return, just like when we get a cold or the flu. You are never cured, but when your body gets run
    down again, you get another cold. And your body heals again.  It is our own body that keeps us free of all diseases.
    But it has to be in working order to do so. 

    If you have alot more questions, you can e-mail me.

    Takingcontrol58

     

     

     


     

    Wealth of information

    TakingControl58 -  Your post gave me hope and terrified me at the same time. I had no idea this was so agressive. My chemo has been delayed due to my incision opening after they pulled the staples. How far has this spread while we are all waiting for my wound to heal?

    I have a new medical oncologist I am meeting with on Monday and will ask to be put on metformin and low dose asprin. At this point, any potential effects from the metformin are greatly dimished by the potential for effectiveness with chemo. The surgeon is located in the same building and I will visit their office to discuss sending out a sample of the tumor to the Foundation One for genomic testing (if they still have it). Surgery was almoost 2 months ago.

    My diet and weight are likely contributing factors. Lymphoma is the only family history of cancer. Up until the cancer/tumor diagnosis, I have had no health issues in my 53 years.

    I would appreciate any informaton on supplements and any additonal links that you can provide.

    Thank you so much for responding to my inquiry. 

  • linmk
    linmk Member Posts: 58
    Cancer Mutation Pre-Treatment vs Post-Treatment

    Takingcontrol58, Cancer itself mutates the genes, so I am wondering why you think there is a difference between mutation caused by cancer treatment ie chemo vs the cancer itself.

     

    "I highly recommend the first thing you do is have your surgeon send a tumor specimen to Foundation One for genomic
    testing. It is good to do this when you are first diagnosed as cancer treatment mutates our genes and can cause new
    mutations."

  • takingcontrol58
    takingcontrol58 Member Posts: 264 Member
    Linmk

    Cancer does not mutate your genes.  Your genes mutate in response to hostile conditions in
    your body caused by all types of things, like chronic inflammation, excess metals in your system,
    dangerous chemicals (remember the movie Erin Brockovich?), too much of key hormones
    (like estrogen and insulin growth factor) which are not in proper balance, too much glucose or
    insulin and many other things. It is these gene mutations that can lead to cancer. I've read that
    people with cancer typically have between 4-10 mutations. Or perhaps you are deficient in certain
    vitamins and minerals so some of your internal body processes are not working properly.  We have to
    have all the proper cellular building blocks. For example, being low in Vitamin D is usually found in many
    patients with cancer. Vitamin D is involved in over 200 processes in our bodies, so if you are deficient,
    things can go wrong. It is all about balance.  When your body is out of balance, problems happen. 

    Cells mutate to survive. Only 5-10% of mutations are inherited. The rest are somatic which are changes
    that happen over the course of your life due to your lifestyle and environment.

    I believe it is key to do genomic testing with your original tumor specimen so you can better
    understand all that is driving your cancer right from the start, especially if you are diagnosed with
    advanced or metastatic cancer. But this is not the standard practice in the industry.  I had to ask my
    surgeon to send in my tumor for testing. You need to address your gene mutations and your underlying
    health issues, which could be driving the gene mutations. I believe this is how you heal cancer. Once
    you know your mutations, you'll have a better idea of what is going on.

    You have to determine the root cause of your own cancer.  There might be a targeted therapy you want
    to try for example. I went on metformin which happens to target genes mutated in endometrial cancer,
    though it is not considered a cancer drug. For me, it targeted the conditions that led to my cancer as
    well as some of my gene mutations.  A supplement addressed another key driver of my cancer.
    Perhaps you need to be on drug that targets your hormone levels, for example. You have to address
    all that is driving your cancer, and chemo and radiation don't do that.  They are
    just generic poisons that destroy everything in their paths, the healthy cells and the cancer cells and deplete
    your body of all the nutrients it needs.  That is why supplementation is so important, so you replenish all the 
    goodnutrients that are being washed away or destroyed. We all know the damage from these treatments because
    of all the side effects.

    Once you have chemo and radiation,  it is possible that your mutations may have changed or you have new ones,
    because many chemotherapies and radiation work by mutating your genes, of both healthy and cancer cells.  This is how the
    cancer cells supposedly die. These treatments don't just target cancer cells. We all know radiation causes cancer
    and many chemotherapies are known carcinogens and cause new cancers. That is why if you have a recurrence,
    you would have to do testing on the new tumor to see if the mutations are the same as the original tumor because
    then your treatment might change.
     

    Takingcontrol58

     

  • linmk
    linmk Member Posts: 58
    Thank you for your response

    I need to ask my doctor more questions. I don't think that there was enough tissue from my first two endometrial biospies to do genomic testing.  The doctor who did the first biopsy told me that she took at least two or three samples, but what happened to them I don't knøw. My current doctor told me that there was nothing from my hysterectomy to test. My uterus was a calcified mass after chemo.

    I am under the impression that different parts of the tumor can have different genomic defects. I just looked at the notes from my last appointment. I think the sample is from the tumor recurrence which is present in my vagina.My tumor was positive for PTEN & PIK3CA. The tumor is MSS --microsatellite stable.

    Like you I am on metformin. I switched to the name brand, Glucophage XR, about six months ago. Glucophage is more consistent in lowering blood sugars than most of the generics. I have type II diabetes. I do my best to adhere to Dr. Richard Bernstein's 6-12-12 low carb diet--Diabetes Solution.

    Good luck to you on your path.

  • takingcontrol58
    takingcontrol58 Member Posts: 264 Member

    Wealth of information

    TakingControl58 -  Your post gave me hope and terrified me at the same time. I had no idea this was so agressive. My chemo has been delayed due to my incision opening after they pulled the staples. How far has this spread while we are all waiting for my wound to heal?

    I have a new medical oncologist I am meeting with on Monday and will ask to be put on metformin and low dose asprin. At this point, any potential effects from the metformin are greatly dimished by the potential for effectiveness with chemo. The surgeon is located in the same building and I will visit their office to discuss sending out a sample of the tumor to the Foundation One for genomic testing (if they still have it). Surgery was almoost 2 months ago.

    My diet and weight are likely contributing factors. Lymphoma is the only family history of cancer. Up until the cancer/tumor diagnosis, I have had no health issues in my 53 years.

    I would appreciate any informaton on supplements and any additonal links that you can provide.

    Thank you so much for responding to my inquiry. 

    Darla's mom

    I'm glad my post gave you hope- I didn't mean to terrify you.  But the best advice I can give to a cancer
    patient is to take control of your health from the day of your cancer diagnosis.  And it looks like you are doing that.
    I think it's important not to be rushed into treatment without understanding your options and all the risks
    involved. You do have a choice.  You don't have to get all the treatments that are recommended for you: I didn't
    take many of the treatments recommended for me. Also, I believe they say the ideal is to start chemo no longer than
    eight or nine weeks after surgery.  

    You mention your diet and weight are likely contributors. That was the case with me. Once my cancer
    metastasized, I radically changed my diet and the weight started to come off. If you know that is an issue,
    I would focus on this ASAP. This could help you more than anything if you think it may have led to your cancer.
    Maintaining a healthy weight is one of the best things women can do to prevent a cancer recurrence.

    I think we all know our own bad habits. A bad diet leads to excess weight whichleads to many conditions that can lead to EC. 
    I would start on the metformin as soon as you can. What women aren't being told is that chemotherapy activates many of the
    processes that can cause cancer and metformin targets these processes- like angiogenesis (creation of new blood vessels that
    cause new tumors and metastasis) and the creation of cancer stem cells (which is why people become chemo resistant).
    It is believed the chemo kills the daughter cells but leaves the cancer stem cells that go on to form new cancer. 
    Metformin also targets cancer stem cells.

    You didn't mention that you have diabetes- are you pre-diabetic or do you have insulin resistance?  If weight is an issue, is the
    weight around your stomach? Have you had blood tested for insulin, insulin growth factor hormone, glucose and A1C? These are
    all usually related to excess weight.  I had issues with all of them and metformin lowers all levels.  I also had very high cholesterol
    which has come down about 70 points on the metformin.  As I've said in other posts, you have to determine the root causes of your
    own cancer and treat those health issues. I would also test for ferritin (stored iron levels) which go up for women in menopause.
    My were very high and I believe was the reason I was diagnosed with a Grade 3 cancer, very fast growing. I also test my hormone
    levels regularly.

    The doctor that brought me to remission died right before I was NED.  His last book, The Gene Therapy Plan, (by Dr. Mitchell
    Gaynor), he lists the supplements he gave to his cancer patients.  I will list them below, but as he states, certain supplements
    may be more important than others for a given individual.  That is why I would suggest you meet with a naturopath or find an ntegrative oncologist who is also an expert
    in standard cancer treatment and completmentary treatment.  Here are the supplements my doctor recommended for his cancer patients:

    Artichoke extract
    D-limone
    Magnolia extract
    DIM
    Maitake D Fraction
    Shitake mushroom
    Chaga Mushroom
    Oil of Oregano
    Vitamin D3
    Skullcap
    Balckseed (black cumin seed oil)
    Bee propolis

    I use all of these supplements except bee propolis and artichoke extract.
    I would also recommend Bosswelia (Frankencense) and Curcurmin. Ginger is in the 
    same family and is also a cancer killer.  I use that as well. Curcurmin targets some of the things metformin
    does.
    I also use Alpha Lipoic Acid which can prevent neuropathy, so you may want to use before you start chemo.
    It helps raise the levels of glutathione in your body, the master anti-oxidant.

    Some good web sites for integrative/natural medicine:
    www.lef.org (the site where I first learned about metformin- excellent to learn about many health issues)
    I learned about this site in Suzanne Somer's book Knockout, which is excellent. It got me on the road to
    integrative cancer treatment.
    www.mercola.com
    www.thetruthaboutcancer
    www.naturalnews.com

    Some good web sites from the medical community:
    www.pubmed.gov
    www.statnews.com
    www.medicalnewstoday.com
    www.oncologynurseadvisor.com

    It is important to read multiple sites to get a good idea of all perspectives.
    You can also go directly to the websites of some of the cancer hospitals.

    I too had no health issues before I was diagnosed at 58.  But it turns out I did have health issues-
    high insulin, IGF-1, ferritin, that doctors were not testing me for.  You don't know what you don't
    know, that it why blood testing is so important.  When you get cancer, you are not healthy.  I thought
    I was healthy- I never got sick, but it turns out I had high levels of the things that cause cancer. At 
    this point, I'm healthier than I have ever been.

    Takingcontrol58

     

     

     

     

     

     

     

     

     

  • Darla's Mom
    Darla's Mom Member Posts: 12 Member

    Darla's mom

    I'm glad my post gave you hope- I didn't mean to terrify you.  But the best advice I can give to a cancer
    patient is to take control of your health from the day of your cancer diagnosis.  And it looks like you are doing that.
    I think it's important not to be rushed into treatment without understanding your options and all the risks
    involved. You do have a choice.  You don't have to get all the treatments that are recommended for you: I didn't
    take many of the treatments recommended for me. Also, I believe they say the ideal is to start chemo no longer than
    eight or nine weeks after surgery.  

    You mention your diet and weight are likely contributors. That was the case with me. Once my cancer
    metastasized, I radically changed my diet and the weight started to come off. If you know that is an issue,
    I would focus on this ASAP. This could help you more than anything if you think it may have led to your cancer.
    Maintaining a healthy weight is one of the best things women can do to prevent a cancer recurrence.

    I think we all know our own bad habits. A bad diet leads to excess weight whichleads to many conditions that can lead to EC. 
    I would start on the metformin as soon as you can. What women aren't being told is that chemotherapy activates many of the
    processes that can cause cancer and metformin targets these processes- like angiogenesis (creation of new blood vessels that
    cause new tumors and metastasis) and the creation of cancer stem cells (which is why people become chemo resistant).
    It is believed the chemo kills the daughter cells but leaves the cancer stem cells that go on to form new cancer. 
    Metformin also targets cancer stem cells.

    You didn't mention that you have diabetes- are you pre-diabetic or do you have insulin resistance?  If weight is an issue, is the
    weight around your stomach? Have you had blood tested for insulin, insulin growth factor hormone, glucose and A1C? These are
    all usually related to excess weight.  I had issues with all of them and metformin lowers all levels.  I also had very high cholesterol
    which has come down about 70 points on the metformin.  As I've said in other posts, you have to determine the root causes of your
    own cancer and treat those health issues. I would also test for ferritin (stored iron levels) which go up for women in menopause.
    My were very high and I believe was the reason I was diagnosed with a Grade 3 cancer, very fast growing. I also test my hormone
    levels regularly.

    The doctor that brought me to remission died right before I was NED.  His last book, The Gene Therapy Plan, (by Dr. Mitchell
    Gaynor), he lists the supplements he gave to his cancer patients.  I will list them below, but as he states, certain supplements
    may be more important than others for a given individual.  That is why I would suggest you meet with a naturopath or find an ntegrative oncologist who is also an expert
    in standard cancer treatment and completmentary treatment.  Here are the supplements my doctor recommended for his cancer patients:

    Artichoke extract
    D-limone
    Magnolia extract
    DIM
    Maitake D Fraction
    Shitake mushroom
    Chaga Mushroom
    Oil of Oregano
    Vitamin D3
    Skullcap
    Balckseed (black cumin seed oil)
    Bee propolis

    I use all of these supplements except bee propolis and artichoke extract.
    I would also recommend Bosswelia (Frankencense) and Curcurmin. Ginger is in the 
    same family and is also a cancer killer.  I use that as well. Curcurmin targets some of the things metformin
    does.
    I also use Alpha Lipoic Acid which can prevent neuropathy, so you may want to use before you start chemo.
    It helps raise the levels of glutathione in your body, the master anti-oxidant.

    Some good web sites for integrative/natural medicine:
    www.lef.org (the site where I first learned about metformin- excellent to learn about many health issues)
    I learned about this site in Suzanne Somer's book Knockout, which is excellent. It got me on the road to
    integrative cancer treatment.
    www.mercola.com
    www.thetruthaboutcancer
    www.naturalnews.com

    Some good web sites from the medical community:
    www.pubmed.gov
    www.statnews.com
    www.medicalnewstoday.com
    www.oncologynurseadvisor.com

    It is important to read multiple sites to get a good idea of all perspectives.
    You can also go directly to the websites of some of the cancer hospitals.

    I too had no health issues before I was diagnosed at 58.  But it turns out I did have health issues-
    high insulin, IGF-1, ferritin, that doctors were not testing me for.  You don't know what you don't
    know, that it why blood testing is so important.  When you get cancer, you are not healthy.  I thought
    I was healthy- I never got sick, but it turns out I had high levels of the things that cause cancer. At 
    this point, I'm healthier than I have ever been.

    Takingcontrol58

     

     

     

     

     

     

     

     

     

    Enlightened - no longer terrified

    I can't thank you enough for this.

    You gave me information that someone at my surgeon's office should have given me.  I am now enlightened.

    I spoke with the new oncologist yesterday about putting me on metformin. She told me she would consider it and has since agreed.  At statge 4, there are no adverse reactions that would be worse  than the chemo and the oppotunity for improved response to chemo greatly outweighs any potential side effects. 

    I will be going for a CT scan tomorrow. I pray the last 8 weeks have not allowed the cancer to grow. After my surgery, there was NED.

     

  • takingcontrol58
    takingcontrol58 Member Posts: 264 Member

    Enlightened - no longer terrified

    I can't thank you enough for this.

    You gave me information that someone at my surgeon's office should have given me.  I am now enlightened.

    I spoke with the new oncologist yesterday about putting me on metformin. She told me she would consider it and has since agreed.  At statge 4, there are no adverse reactions that would be worse  than the chemo and the oppotunity for improved response to chemo greatly outweighs any potential side effects. 

    I will be going for a CT scan tomorrow. I pray the last 8 weeks have not allowed the cancer to grow. After my surgery, there was NED.

     

    Darla's mom

    Good luck with your CT scan. I am glad you are getting on the metformin when you start the chemo.

    As long as you start addressing some of your own health concerns, and start healing your body, I think
    you go a long way towards keeping cancer away. I think the key is attacking all the issues that led 
    to your cancer - that is how you defeat cancer.  You have to come at it from many directions-isn't that
    how you actually win a war? You don't just use one battle strategy but come at the enemy from many
    directions?  Air, sea, land?  I think you need to do the same with cancer. Standard cancer treatment is
    not enough when you have advanced or metastatic cancer.

    Also, I only had 6 infusions of the Taxol/Carbo- I had no radiation and am happy I was able to avoid
    that treatment.  It was cancelled once my cancer metastasized. Once I had tumors to target, they
    pulled the radiation. 

    Have faith in your self. I decided I was going to live despite what the top cancer hospital in the country
    told me. They obviously don't know everything.

    Takingcontrol58