What happened?

Julie's Sister

I am Julie's sister.  My sweet, 46 year old sister, just passed away from Ovarian Cancer, just 14 months after initial diagnosis. Her husband and I were her caregivers, researchers, etc.  We are still wondering what happened?  We thought she was getting better, but I guess we had our head in the sand.  I am on this site hoping to be educated by the "experts" (those of you who have been through it).  I am determined to be well informed for the other female members of our family. 

Briefly, Julie was diagnosised with IIB then IIIC endometriod ovarian carinoma after finding a mass on each ovary.  She had the cookie cutter surgery, front line cookie cutter chemo (carbo+taxol). 6 rounds.Had 3 months of NED before experiencing pain in right side.  CT scan showed 3 tumors.  Started doxil, after 2 rounds, scans showed no progress, chemo changed to gemzar/cisplatin.  after 2 rounds of that, bowel obstruction which required surgery.  Healing well from surgery when begin to get jaundiced.  Biliribun kept going up.  Dr. suggested topotecan.  Had one round of that.  Went to get the 2nd round and blood work not good enough for chemo and biliribun had risen even highter (16)  APPT made for the next week.  That night she begin experiencing pain in her right side below the ribe cage.  She passed away early in the am.  What happened? 

Cafewoman53

I am so sorry !

I don't know the answer to your question but I just wanted to let you know I am so sorry for your loss. Did her doctor explain anything to you?

Colleen

Alexandra

Dear Julie's Sister

My sincerest condolence to you and your family on the passing of your beloved sister.

From what you are describing Julie had platinum-resistant ovarian cancer (it came back in under 6 months after finishing first line chemo). Doxil was the right move, but didn't work. Gemzar, topotecan were salvage chemo that didn't work for her either. It's sad but it happens. Jaundice combined with pain on the right side under the ribs could probably be explained by liver failure due to mets to the liver.

Because of Julie's early age, the question you want to ask: was her ovarian cancer hereditary? Especially if you have other cases of breast and/or ovarian cancer in the family. If she was not tested for BRCA gene, I recommend that you and her other female siblings and children get genetic testing.

Again, I am very sorry for your loss.

Hugs,

Alexandra

NoTimeForCancer

I am so sorry. 
Julie was so

I am so sorry. 

Julie was so blessed to have such a caring and loving sister and husband in her life. 

You are in my prayers.

Julie's Sister

Alexandra said:

Dear Julie's Sister

My sincerest condolence to you and your family on the passing of your beloved sister.

From what you are describing Julie had platinum-resistant ovarian cancer (it came back in under 6 months after finishing first line chemo). Doxil was the right move, but didn't work. Gemzar, topotecan were salvage chemo that didn't work for her either. It's sad but it happens. Jaundice combined with pain on the right side under the ribs could probably be explained by liver failure due to mets to the liver.

Because of Julie's early age, the question you want to ask: was her ovarian cancer hereditary? Especially if you have other cases of breast and/or ovarian cancer in the family. If she was not tested for BRCA gene, I recommend that you and her other female siblings and children get genetic testing.

Again, I am very sorry for your loss.

Hugs,

Alexandra

liver mets

You are so right.  I believe it was liver failure.  She did have the BRACA gene test.  It came back negative for breast or ovarian cancer, but there was a mutation that was poly favortism ( I think) which indicate no connection to cancer.  Thanks for responding.  I just wished the doctors would have addressed her liver tumors.  At first the liver was not affected.  Then after a few months a small lesion, then a 1.5cm lesion and all of a sudden it was 6cm.  Dr did liver enzyme tests.  all off the charts.. DUH! I guess it was just to late

Cindy Bear

Hello

I am so sorry for the loss of your beloved sister. My mother was 79 when we lost her (and I feel that was way too young)  She had uterine cancer. She passed away 4 mos into treatment.. and like you, I came in here looking for answers.. I was told by her doctor/medical team after she passed, "We don't know what happened" and I honestly think that's the first really honest thing they told us. It does sound like your sister's cancer was very aggressive/resistant to chemo and the symptoms you decribed, jaundice, the pain on right side under rib cage and the billrubin levels, are I believe, all classic signs of liver failure. Most likely cause by the cancer or chemo or a combination of both. Keeping you in my thoughts and prayers.

 

Rosamond M

Dear Julies Sister.

It is with much sympathy for your loss of that beautiful lady I am writing this. I am unable

to give any medical advice as to why or what happened. I am much older than Julie was and

I do find I have a sense of guilt that that so many young, beautiful women like Julie die so quickly

after diagnosis and I,who was diagnosed at about the same time, am still coping quite well.

That is the reason that I am working very hard to spread the word to as many women as possible

about the symptoms of this sneaky disease and the great need to be aware of your own body and

make sure your doctors listen to what you are telling them. I do know that some women don't suffer

any  symptoms but I have read that 90% of women when diagnosed have said that they HAVE experienced

symptoms. We really do need to alert younger women that they are NOT  to young to have Ovarian cancer

and the desperate need for a reliable screening test needs to be broadcast widely. With May 8th being World

Ovarian Cancer day we all need to make sure we make our case! I know you and your female(and male!)

 family members will have a special reason for spreading the word on behalf of the very lovely Julie.

My thoughts are with you.

   Alexandra I love your new photo and ,as always, your information to Julie's sister was spot on.

 

      

wholfmeister

I agree

I agree with everything Alexandra wrote.  But I would stress, this is my best guess.  It is impossible for us to know for sure.  What is certain is that your beautiful young sister had a Very aggressive cancer and died much too soon.  I am so sorry your family is left with such loss.

It sounds as if her doctors were trying to find the correct treatment, because she moved to different chemo agents in pretty quick succession.  The cancer was just too aggressive.  I don't know why no one recognized the liver failure

The sad truth is, modern medicine just doesn't have the answers yet for ovarian cancer.  That's why this discussion board is so important to us.  Please visit as often as you feel the need.  You will always find an understanding hug.

lovesanimals

wholfmeister said:

I agree

I agree with everything Alexandra wrote.  But I would stress, this is my best guess.  It is impossible for us to know for sure.  What is certain is that your beautiful young sister had a Very aggressive cancer and died much too soon.  I am so sorry your family is left with such loss.

It sounds as if her doctors were trying to find the correct treatment, because she moved to different chemo agents in pretty quick succession.  The cancer was just too aggressive.  I don't know why no one recognized the liver failure

The sad truth is, modern medicine just doesn't have the answers yet for ovarian cancer.  That's why this discussion board is so important to us.  Please visit as often as you feel the need.  You will always find an understanding hug.

Dear Julie's Sister

I am so sorry for the loss of your beloved sister.  I wish there was something I could say to take away your pain.  There are no easy answers to why some women are successful in their fight with this beast and why some women succumb, after bravely fighting the good fight.  I hope in time that you and your husband will find some comfort in knowing that you were there for her when she most needed you.

Peace and love,

Kelly

scatsm

Julie had such a sweet smile

and always had encouraging words for her teal sisters. She is greatly missed by us all.

Thank you so much for posting. As a fellow traveler down this rocky path, there is an awful feeling when someone dies. Since we ourselves are usually the posters on the board, there is a huge void when someone, like Julie, passes away. As sad as it is to hear about what happened to your dear sister, you gave us all the gift of hearing about her journey's end. I so appreciate your taking the time to write to us.

I also don't know what happened, but would echo Alexandra in thinking mets to the liver did her in. What I don't understand is that her doctors apparently didn't prepare you for this. Were they in denial? Was it a surprise to them as well? I might want to talk to her gyn/onc to ask some of those questions. I believe it part of the doctor's job to communicate those kind of concerns to the family.

Ovarian cancer, like so many cancers, is a sneaky, unpredictable disease. Why some of us make it and some of us don't is a mystery for sure. Julie was a ray of sunshine on this board. Her light continues to shine for us through your thoughtful post.

 

Susan 

       

poopergirl14052

scatsm said:

Julie had such a sweet smile

and always had encouraging words for her teal sisters. She is greatly missed by us all.

Thank you so much for posting. As a fellow traveler down this rocky path, there is an awful feeling when someone dies. Since we ourselves are usually the posters on the board, there is a huge void when someone, like Julie, passes away. As sad as it is to hear about what happened to your dear sister, you gave us all the gift of hearing about her journey's end. I so appreciate your taking the time to write to us.

I also don't know what happened, but would echo Alexandra in thinking mets to the liver did her in. What I don't understand is that her doctors apparently didn't prepare you for this. Were they in denial? Was it a surprise to them as well? I might want to talk to her gyn/onc to ask some of those questions. I believe it part of the doctor's job to communicate those kind of concerns to the family.

Ovarian cancer, like so many cancers, is a sneaky, unpredictable disease. Why some of us make it and some of us don't is a mystery for sure. Julie was a ray of sunshine on this board. Her light continues to shine for us through your thoughtful post.

 

Susan 

       

Dear Julie's sister

I too was wondering what happened...but from what I read it does sound like liver disease. I agree with  Susan ...did Drs. tell her about this?  Sometimes I just want to scream at this f #### cancer! I am sure you need answers and I hope you can find some. So sorry our sweet angel is gone....I close my eyes and see her sweet smile...smiling at all of us.....val

2014-05-02

Nflinchum

Dear Julie's Sister

I am so sorry for your loss. I too am battling PPC since Dec of 2011. Going into remission for almost 7 months then reoccurring. I have been on chemo since may of 2013. I just started mt 3rd cycle of different chemo. I don't know what happened either. I just know  this type of cancer is very aggressive. My thoughts are with you and your family. I miss Julie's post so much.

nadine