stage 4 ovarian cancer second line therapy

trinity376

Good morning all,

My mother is 65 years old and was diagnosed with stage 4 ovarian cancer in December after sudden accumulation of 7L of ascites.

She had optimal debulking at Sloan kettering in January 2016: Total hysterectomy, omentectomy, removal of gall bladder, spleen, part of duodenum rectum  bladder and lymph nodes. She healed without any complications and started chemo immediately 4 weeks post op.  She has had no side effects from the chemo regimen carboplatin/taxol. Just little tired.

She is entering the last cycle (cycle 6) and while her Ca 125 has trended down her Ca125 has reached plateau at 68 for past two cycles.

The oncologist is concerned that she is not normalizing.

Has anyone had this experience?  if so , what happens next?  options?

Thank you if yo uhave any info please share.

Denise

LorettaMarshall

takingcontrol58 said:

Stage 4 ovarian cancer- treatment with metformin

Denise,
I am from the uterine cancer board.  I had remarkable success with metformin for my Stage IV endometrial cancer.
I went into complete remission after being given a death sentence.

Nov 2014- total hysterectomy (removed uterus, ovaries, fallopian tubes, cervix, part of omentum and 1/2 cm
tumor on outer rectum. Cancer had spread to my lymphatic system. Diagnosed with Stage IIIb endometrial cancer.

Jan 2015- CT scan prior to treatment at Sloan showed my cancer metastasized to liver, spleen, outer rectum tumor was 5cm,
and had nodules on lungs, spleen and outer colon. 34cm of total tumors. Stage IV. Sloan said I had 4-6 months to live.
(they adminstered my chemotherapy).

My gynecological oncologist was my surgeon. She is a top doctor in NYC and is with Lenox Hill.  Let me know if you want
her information if you want to take your mother to see her. She keeps me on the metformin today.

Had 2 chemo infusions of Taxol/Carbo at Sloan then my own oncologist put me on metformin. CA125 was 280
after 2 chemos- after one month on metformin CA125 was 20.  After 3rd chemo infusion, CT scan
showed 88% of my tumors disappeared- without any surgery.  I am curious why your mother had so
many organs removed.  I know they say we don't need the spleen, but it is our master lymph node.

Before I started the chemo at Sloan, I entered a trial that added metformin to the Taxol/Carbo to make
the chemo work better. Once I found out about all the anti-cancer properties of metformin, I asked my
own oncologist to put me on the drug.  I couldn't risk getting a placebo when this drug has been around since
the 1950s and has one of the best safety records. Sloan did not put me on the drug, even though they told me
I had 4-6 mos to live. Metformin saved my life. 

I started metformin Feb 2015 (removed myself from the trial) and have been on it ever since.
I was declared cancer-free in August 2015, 7 mos after I started taking metformin.  Since starting metformin
in Feb 2015, I have not had any new cancer develop. 

Metformin targets many processes and gene mutations that create cancer- it is trully a miracle drug.  The drug companies are
working to create drugs that do many of the things that metformin does but metformin does all these things in one pill. And it is the most
prescribed diabetes/insulin resistance drug in the world.  It is a generic drug and very cheap.

I understand there is a new trial for ovarian cancer with the same protocol - Taxol/Carbo with metformin or placebo.  Please
do not put your mother in the trial.  Ask her internist about getting on the drug.  You can ask Sloan but as I said, they would
not put me on it and I was Stage IV.  Your mother can't risk getting a placebo when she is Stage IV.

If you want to read all about what metformin does, you can go the website of the National Institutes of Health-
www.pubmed.gov- search "metformin and cancer" and you will find over 2800 articles.

Let me know if you need anything else.

Takingcontrol58

"TakingControl58"~will put Metformin on my list of options 4sure

Hello - This is a fantastic uplifting post, and a miracle as well.  Thanks for sharing your story with us "Stage IVs".  When I have to face another decision on what to try, I'll certainly discuss Metformin with my oncologist.  Thanks so much. 

Loretta

takingcontrol58

LorettaMarshall said:

"TakingControl58"~will put Metformin on my list of options 4sure

Hello - This is a fantastic uplifting post, and a miracle as well.  Thanks for sharing your story with us "Stage IVs".  When I have to face another decision on what to try, I'll certainly discuss Metformin with my oncologist.  Thanks so much. 

Loretta

Loretta- Metformin as an option

Loretta,
I continue to remain on metformin because it kills cancer stems cells (whcih they believe are the cause of cancer recurrence)
 and reverses two of my mutations (which are tied to both endometrial and ovarian cancer).  It also lowers my Insulin Growth
Factor-1 (IGF-1) which is a cancer fertilizer and I  believe what drove the rapid growth of my cancer. Hormones were not
my problem. I believe it is preventing my cancer from returning.

It is now being tested as an anti-aging drug - they believe it delays cancer, heart disease and alzheimers until later in life.
My husband is now on it as a preventive medicine.  He does not have cancer.

Takingcontrol58

 

takingcontrol58

LorettaMarshall said:

"TakingControl58"~will put Metformin on my list of options 4sure

Hello - This is a fantastic uplifting post, and a miracle as well.  Thanks for sharing your story with us "Stage IVs".  When I have to face another decision on what to try, I'll certainly discuss Metformin with my oncologist.  Thanks so much. 

Loretta

Loretta

L

takingcontrol58

Stage 4 ovarian cancer- treatment with metformin

Denise,
I am from the uterine cancer board.  I had remarkable success with metformin for my Stage IV endometrial cancer.
I went into complete remission after being given a death sentence.

Nov 2014- total hysterectomy (removed uterus, ovaries, fallopian tubes, cervix, part of omentum and 1/2 cm
tumor on outer rectum. Cancer had spread to my lymphatic system. Diagnosed with Stage IIIb endometrial cancer.

Jan 2015- CT scan prior to treatment at Sloan showed my cancer metastasized to liver, spleen, outer rectum tumor was 5cm,
and had nodules on lungs, spleen and outer colon. 34cm of total tumors. Stage IV. Sloan said I had 4-6 months to live.
(they adminstered my chemotherapy).

My gynecological oncologist was my surgeon. She is a top doctor in NYC and is with Lenox Hill.  Let me know if you want
her information if you want to take your mother to see her. She keeps me on the metformin today.

Had 2 chemo infusions of Taxol/Carbo at Sloan then my own oncologist put me on metformin. CA125 was 280
after 2 chemos- after one month on metformin CA125 was 20.  After 3rd chemo infusion, CT scan
showed 88% of my tumors disappeared- without any surgery.  I am curious why your mother had so
many organs removed.  I know they say we don't need the spleen, but it is our master lymph node.

Before I started the chemo at Sloan, I entered a trial that added metformin to the Taxol/Carbo to make
the chemo work better. Once I found out about all the anti-cancer properties of metformin, I asked my
own oncologist to put me on the drug.  I couldn't risk getting a placebo when this drug has been around since
the 1950s and has one of the best safety records. Sloan did not put me on the drug, even though they told me
I had 4-6 mos to live. Metformin saved my life. 

I started metformin Feb 2015 (removed myself from the trial) and have been on it ever since.
I was declared cancer-free in August 2015, 7 mos after I started taking metformin.  Since starting metformin
in Feb 2015, I have not had any new cancer develop. 

Metformin targets many processes and gene mutations that create cancer- it is trully a miracle drug.  The drug companies are
working to create drugs that do many of the things that metformin does but metformin does all these things in one pill. And it is the most
prescribed diabetes/insulin resistance drug in the world.  It is a generic drug and very cheap.

I understand there is a new trial for ovarian cancer with the same protocol - Taxol/Carbo with metformin or placebo.  Please
do not put your mother in the trial.  Ask her internist about getting on the drug.  You can ask Sloan but as I said, they would
not put me on it and I was Stage IV.  Your mother can't risk getting a placebo when she is Stage IV.

If you want to read all about what metformin does, you can go the website of the National Institutes of Health-
www.pubmed.gov- search "metformin and cancer" and you will find over 2800 articles.

Let me know if you need anything else.

Takingcontrol58

LorettaMarshall

Denise~Options R fewer w/Stage IV but keep hope alive for Mom!

 Dear Denise:

Your mother’s surgery and mine are very similar.  Having my uterus removed at age 36, my gynecologist thought it best to leave my ovaries and fallopian tubes intact.  In hindsight, I do wish that everything had been removed back then.   My first diagnosis was Peritoneal Carcinomatosis in November of 2012.  My SECOND opinion in December consisted of exploratory surgery at the University of Pittsburgh Medical Center.  A PET/CT scan there indicated cancer was also in my ovaries, but at the time tumors were too numerous and too large for removal.  My instructions were to return home, have chemo which I did.  I had 6 sessions of Carboplatin/Taxol.  It reduced the tumors to an operable size.  So like your mom, I had my fallopian tubes, ovaries, gallbladder, spleen, omentum, and sections of my bowels removed.  That was July 1, 2013.

 Then again in 2015,  I began to have symptoms of intestinal blockage, so I went for another round of chemo, same combination.  I finished that on Sept. 25, 2015.  In December 2015, my CA-125 was down to 8.  Now at my last visit last week, it is back up to 202.  I never had a number higher than this originally.  What does this mean?  My doctor has another CT scheduled for June to see if something new is there that we can do something about.

 Now Denise, I don’t know what your mom’s CA-125 level was when her Ovarian Cancer was diagnosed, but in my case, I never expected mine to be stable for any long period of time.  When I first learned about my cancer, it was Stage IV, so for me it was a matter of how long will I live, and what can be done for me?  So as soon as I was diagnosed, I did some research and found that Cytoreductive Surgery was the best option for removing some of the organs that were most likely to become cancerous as well.  I see that your mom has had this surgery.

 So for me, I never expected to be cured.  Now although I am a Christian, as for healing, I am not one subscribes to the “name-it-and-claim-It” group. ( No disrespect intended.) For those that believe that they’re free to think that way, but personally I think it is not the amount of faith that I have, but what God allows in my life.  He promises to never leave me or forsake me, and I can’t ask for more.  None of us were destined to live forever on this earth, and I will not be the first to beat the odds.  But I do truly believe that at the end of my allotted days, I will carried by the angels into the presence of God and see Him face to face.  Lest I be accused of proselytizing, I will only state that this is my belief. 

 So I can only say, it is by the grace of God that I am still alive.  I thank Him for each day of life.  Although I’m living with a terminal diagnosis, I am thankful for the good doctors, and yes, even thankful for the often very-debilitating Chemo treatments, because the upside of that is that it has prolonged my life.  It has given me more time to be with my family.  Heaven has to be “out of this world” wonderful and beyond description, but at this moment, I just hope the Lord will give me some more time down here.  And as I read the letters that ladies write here, I believe that this is their hope and prayer as well.  Now I’m sure as time goes by, when my condition will most likely worsen, I will change my mind, and tell the Lord I’m ready to go now.  (Understanding of course that I’m not capable of telling the Lord what I want done.  If so, I wouldn’t be on this board, but here I am.)  However, for now, my best hope is that there will be more good days than bad ones.  And when my next scheduled CT scan on June 2^nd comes around, yes, I’ll be apprehensive and temporarily probably be down in the dumps, but the Lord has never failed to lift me up above the slough of despond.  I don’t want to linger long there, because it’s not productive.  It robs me of the joy of living. The birds are still singing, the sun is still rising, I can still walk, talk and eat and have my right mind, so all is not bad. 

 Since I’m also Stage IV, I just thought you would like to know that your mother has company.  I will tell you that chemotherapy has a cumulative effect, and my number dropped down to 8 in December of this past year (2015).  So it’s very possible that this is a plateau that will change in a matter of weeks.  My oncologist scheduled at CT in the middle of my treatments, and then waited till 3 weeks after the final treatment before accessing the effectiveness.  So actually, I wouldn’t be surprised to see your mom’s count go lower after the completion of treatments. Of course, we always cringe when our numbers rise.  That’s understandable.

 Lastly, what are the options?  My oncologist says there are other options, and he rattles off some ideas.  But he and I both know, and agree, that I will never be completely cancer free.  On my very first consultation with him, I told him I didn’t want him to “keep anything from me.  Just tell me like it is.”  He assured me that he would.  I marvel at, and sympathize with, the people who have been diagnosed with cancer, and refuse to accept it, or don’t have any idea of how to deal with it.  Sometimes there doctors simply will not level with them.  Pity that poor patient.

 Just tonight, a friend of mine called.  She is a doctor who ultimately was forced to give up her practice because of Esophageal Cancer, Stage IV.  She has gone through multiple sessions of chemotherapy.  Frankly, we are both surprised that she is still alive 4 years later.  That is highly unusual.  We first met on the web on the Esophageal Cancer (CSN) link.  (My husband is a miracle in that he has survived EC Stage III for over 13 years.  So this is not my first time around the block.  Maybe that’s why I can be more objective about my own cancer.)

 But back to my friend.  Soon I learned she lived in my hometown.  Ultimately, fatigue forced her give up her practice as an Obstetrician.   In my conversation, I said, “What would you say to a Stage IV Ovarian Cancer patient?”  She said what she has said so many times before.  “IT IS WHAT IT IS!”  (Once time I found the perfect gift for her.  It was a large block with the words written on it.  Yes the block read, “It is What It Is.”  And that’s my attitude.  I’m asking the Lord to give me the ability to cope with what comes my way, even though I would rather be dealing with something minor.  But unfortunately we don’t get to choose what ails us, do we?  There’s a question that goes like this.  “Do you know the difference between major and minor surgery?”  The answer—major if it happens to me—minor if it happens to you!”  But I don’t know anyone on this site with a “minor” condition.  Now if someone hasn’t actually experienced Cytoreductive Surgery they may not understand how major it really is.  And so I applaud your mother for enduring so much.

 And Denise, it won’t be unusual if your mother never regains full energy.  For me, fatigue is a daily companion and I am a “high energy woman.”    Knowing how invasive your mother’s surgery was, she did well to start the chemo sessions 4 weeks post op.  It was good that she fared so well during the surgery, because we can truly say, “it took a lot of her!”  So really what can we expect when we have so much “removed”, and then “throw in” chemotherapy?

 My oncologist always tells me not to put too much emphasis on the CA125 count.  And so, we’ve “observed its steady rise”, but have agreed we will just “watch it” for the time being.  He hates to disturb a time of relative tranquility in my life and so do I. Being a realist, I know that sooner or later, worse problems will arise and no amount of chemotherapy will “fix it.” 

 That leaves me with no option but to live and be thankful for the things I can still enjoy today, because it’s the only day I have.  And as for options, personally, I have no idea what they will be.  Perhaps things will change abruptly when I have my next CT scan on June 2^nd.  But you know, I haven’t lived that far ahead, and so I’m content to be alive today. 

 I’m sorry that this letter isn’t full of answers, but it more to sympathize with your mom, in that when it comes to Stage IV the options are considerably diminished.  And I just want you to know that many here have read your letter if that number “56 reads” means anything.  The “techs” on this CSN site have made changes that were better left unchanged.  So I’m just supposing that we have a lot more “lurkers” than we do active participants on this link. 

 Often I write a long letter with references.  Sometimes the letter will post, and sometimes an ERROR message pops up.  So I haven’t used any links in this letter, trying to avoid the ERROR message, which is an error on their part.  As yet they are unable to “fix it!”  That happened to me just a few minutes ago.  But I wanted to acknowledge your letter. 

 My oncologist said that they were doing some Clinical trials with Immunotherapy for Ovarian Cancer.  I see that you are telling Tania to go to Sloan Kettering for some clinical trials not available elsewhere.  Perhaps one of those trials will have to do with Immunotherapy.  However, I wouldn’t want to be in a “blind” trial where one gets a Placebo and one the real deal.  But I hope if your mother enters a trial and has success, that you will surely tell us about it here.  I am sure that many here who have less than a Stage IV diagnosis for Ovarian Cancer, have to be wondering “Where will my cancer go from here or am I okay?  As for me, my stage is always in “limbo” but God knows all about it.  My times are in His hands and I’m at peace with that.

  Sincere prayers for both you and your Mom,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV