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Hope

Deb17
Posts: 14
Joined: Feb 2018

i was diagnosed with Stage IVb about a year ago. I had a complete hysterectomy and a month later I started 18 weekly rounds of taxil/carbo.  In August I was declared in remission, my CA-125 was 7.2.  Three months later the cancer is back.  Last week I started doxil and in a few weeks they’ll add avastin.  I went to the University of Chicago last week to a specialist there and her opinion was that I had a poor prognosis and there may be no effective therapy.  Please has anyone gone through this?  I’m becoming so depresse.  Thank you.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

What about clinical trials . One of my friends has reoccurring fallopian cancer and is seeing a doc in Chicago and is doing a clinical trial.

Deb17
Posts: 14
Joined: Feb 2018

the specialist I saw in Chicago heads up the clinical trials and told me I was not a candidate for a trial.  I just keep hoping someone out here has had some success with something that might help.

thand you for your response though.

Deb17
Posts: 14
Joined: Feb 2018

I was told that I am not a candidate for any clinical trials.  

saltycandy13
Posts: 167
Joined: Dec 2017

Never give up hope.  I don't know where you live but Sloan Kettering Hospital saved 2 of my husband's aunts.  They are excellent.  I, myself, have gone to Cleveland Clinic, not for cancer, but for Graves' Disease and they are real bull dogs there.  They get to the bottom of everything.  

Also, The Mayo Clinic in Minnesota.  I went there for my brain tumor years ago.  I consider them the best!

God Bless!

Karen

Deb17
Posts: 14
Joined: Feb 2018

thsnk you, Karen for your suggestions.

evolo58
Posts: 293
Joined: Dec 2017

First, where is the cancer recurring? An elevated CA 125 tells only part of the story, and is not 100% accurate. Have you had any other tests to determine what's going on?

Second, if your doctor isn't ready to fight for you, seek a second opinion. You do not need defeatism on your doctor's part at this point. At the very most, you'll know if the first doctor is correct and if your current treatment is standard for your condition.

Deb17
Posts: 14
Joined: Feb 2018

the cancer is reoccurring in the liquid below the stomach.  When I had my original surgery they did a complete hysterectomy and they also removed the omentum.  My current oncologist is following the current protocol for my cancer.  the second opinion I got was from the University of Chicago and she’s the dr. that gave me no hope.  I’ve tried cannabis oil but it doesn’t take my constant pain away.  Norco Helps but I don’t like to take it too often. ive had CT scans and PET scans and needle biopsies.

Deb17
Posts: 14
Joined: Feb 2018

the cancer started in my uterus and spread to the omentum.  The cancer was also in the fluid below the omentum and that’s where it is again.   Actually I love my oncologis.  The negative doctor was the specialist I went to see to get a second opinion.  I’ve had a biopsy, Ct and PET scan and multiple CA-125 tests.  I’m just scared which I know all of the women on this site are.

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I think it would be fair to say that this is a bitterweet place where hope fluctuates.  Some folks fight and win, but others here fight and lose.  If anything, this group will listen and understand, offer  lots of moral support, and members have tons of information about your disease and control.  I am so sorry, I have a similar feeling lately, and I know how hard it is -hang in there.

Deb17
Posts: 14
Joined: Feb 2018

you’re right, it’s so difficult to have hope.  I wish I was stronge.

Deb17
Posts: 14
Joined: Feb 2018

i hope the best to you too.

takingcontrol58
Posts: 244
Joined: Jan 2016

Did you see my posting yesterday to your questions under
"NED from Stage IV metastatic cancer."

I provided some suggestions for you and have some other
ideas.  I just sent you a private e-mail.

I am beginning to believe that these oncologists assume the worst when
your cancer returns.  But there are so many things you can do and tests
that they most llikely did not give you (genomic testing and blood tests
for example).

I also recommend you get on metformin- it would be very helpful to 
know your genomic mutations and health issues to see if you are one
of the good candidates for metformin.  They know the mutations that
metformin targets, yet they don't test endometrial cancer patients for
these mutations.

Takingcontrol58

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Deb17, Just wanted to also say how sorry I am you are going through this.  And, to address your wish - YOU ARE STRONG!  Going through cancer and treatments is hard.  But you did it and will continue to do it.  Please know you can come here and ask us anything.  We will always be here for you.

Love and Hugs,

Cindi

Deb17
Posts: 14
Joined: Feb 2018

thank you so much Cyndi.  

saltycandy13
Posts: 167
Joined: Dec 2017

you are strong, but you are stronger than you think.  I have felt so many times that I have crumbled with so many illnesses.  When I got Graves' I was ready to take the bridge, and when I got the phone call "Mrs. R, you have a brain tumor."  I had a full bottle of pills in the palm of my hand just assuming I was going to die.  Somehow I didn't take them.

And now being told uterine cancer?  Well, that was the icing on the cake.  I have a small chance but nevertheless of recurrence and I am watching like an owl.  If it comes back, WE ARE GOING TO WAR.  That's the attitude we must have.

Karen

Northwoodsgirl
Posts: 559
Joined: Oct 2009

I am so sorry to hear of the prognosis. TakeControl58 makes an excellent point about testing and Metformin. I hope TakeControl58 in their private message to you can help you with other ideas. My heart goes out to you. SaltyCandy is amazing with what she has coped with and fought through and so are you! All of the people on this board are hoping that you find what you need to fight this awful disease. The University of Minnesota and Mayo Clinic are worth consulting. Keeping you in my prayers....((Hug))

Lori

saltycandy13
Posts: 167
Joined: Dec 2017

don't ask me how I've done it.  I don't know myself.  I've just been thinking a lot about my father and how he battled thyroid cancer, a ruptured bowel which gave him a colostomy for 10 years before he died and how he would complain but always made it through Live to be 89

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