Anyone! Please help me! I am alone!

Whatever gave u the idea that u had this? My mother's diagnosis was tough. she waited so long for docs to tell her what was really going on. but before that she never said i have this or that. self diagnosing urself is not good. it just leaves u to worry over nothing. if ur ca numbers were fine than i find it hard to believe u have this. they never checked my moms but after diagnosis hers was as high as 18000. and my moms ppc is slow growing so whatever doc told u you would be dead by now is wrong. my mom prob had hers for years.

42inNy said:

Thank you

Thank you ll or your replies. I had the  abdominal MRI and it Did not show anything. I have this pain on my left ovary area and nothing is showing up. Yesterday at my new ( a different opinion) gyn- while she was performing the pelvic exam she touched an area that made me jump. This has happened in the past. She feels all tests have been performed. 

Pelvic mri

Abdominal mri

Ca125

He4

A few other tumor markers

Colonoscopy

Tv ultrasound

I'm really confused....... 

I know something s not right 

What other tests should I be asking For?

Bless you all!

Don't know of any more tests for you.  Have you asked your doctors why you feel unresolved pain but nothing shows up on multiple tests from multiple doctors?  What do they say is the reason for that?

42inNy said:

The gyn Onc feels that even

The gyn Onc feels that even with peritoneal cancer something would've showed. I asked about seeding and she said by the time you feel symptoms- even if a sheet like type of cancer was growing you would see "something" ascites, ect... Want to believe her but finding it tuff to do so with no explanation for my symptoms. :-(

She said that even very high risk patients only get a tv ultrasound and ca125 test. She feels that I've had mris too and that she does not just open someone up to explore until something is seen on one of the tests. 

Im not 100 percent convinced. 

Ty

In April 2012, my mom, 81 years old, had a total hysterectomy.  She had a tumor, that penetrated the uterine wall.  The doctor gave a total hysterectomy and told us he removed everything and their was no lymph node involvement.  I think it was Stage 11 a.  He recommended that she be given internal radiation 4X.  She did all this and everything was great, when faithfully for her doctor visits and pap every 3 months.  In March, 2013, her sister was diagnosed with stage 4 esophageal cancer and she was quite upset.  She kept on complaining that she wasn't feeling well and had indigestion.  We took her to her regular doctor and he said she was a bundle of nerves and prescribed something to calm her.  On April 30 she had another visit with her gyn, and she mentioned she didn't feel well, and felt her belly was bigger.  He ordered a CTscan.  The results weren't good.  He said the cancer was in her peritoneal cavity with spots on her liver, not in the liver, and a tumor on her left kidney.  We are all devasted.  Didn't expect this.  She is going to see a oncologist on May 8, but she does not know if she wants do any chemo.  We really don't know yet, what he will recommend.  Thanks for listening.

Today, my mom went to a different oncologist, he gave her two options.  Doxil, or hospice (great options)  She really doesn't know what to do.  He told her that she could die immediately from doxil.  She asked what he would do, if the record, of course, and he explained that she is the president and needs to make the decision.  It is such a hard decision to make.  So very confused.  Has anyone ever had some good results with doxil.  Thank you for listening.

vickijune said:

9 year survivor!

Hi.  So sorry about your Mom.  Please tell her that I am a NINE year survivor of ADVANCED primary peritoneal cancer.  During the 9 years since diagnosis, I have had several cancer debulking surgeries (that have included removing 18 inches of my small bowel, a couple of feet of my colon, etc.)   AND  7 years  (84 months!)    of chemo.  AND please let her know that I had  48 months of  Doxil during that 7 years.  I have been told that I MAY have the record for the most Doxil!  WOW...The things that some folks brag about....LOL!!!!  

Please keep reading.  This next part is really great.... I have NOT had any chemo....NO chemo...for the past 18 months and my PET  scan is stable.  

I can't imagine NOT having Doxil.  I am active, I enjoy my life, I am happy, I AM HERE....And yes.... I am so very, very lucky.  

I wish the best for your Mom. Negotiating cancer and chemo can be very scary at first. I can remember how excited and hopeful I was when I first met some long term survivors. 

I hope that my message brings hope to your mother...and to others who may read this column.  I would be happy to share more of  my experiences with your MOther (or with others) if it would be of help, provide hope, etc. 

Thank you so much for posting!!!  So wonderful to read your story!  Gives enormous hope to many of us I am sure. I have been on chemo for most of the 18 months since my diagnosis (mind you only 3 rounds of Doxil as that didn't help me) but now on Topotecan. Many more nrounds to go to catch up to you and I hope to be around as long as you!  Keep up the great work and I wish you many years chemo and cancer free!

Julie x

vickijune said:

9 year survivor!

Hi.  So sorry about your Mom.  Please tell her that I am a NINE year survivor of ADVANCED primary peritoneal cancer.  During the 9 years since diagnosis, I have had several cancer debulking surgeries (that have included removing 18 inches of my small bowel, a couple of feet of my colon, etc.)   AND  7 years  (84 months!)    of chemo.  AND please let her know that I had  48 months of  Doxil during that 7 years.  I have been told that I MAY have the record for the most Doxil!  WOW...The things that some folks brag about....LOL!!!!  

Please keep reading.  This next part is really great.... I have NOT had any chemo....NO chemo...for the past 18 months and my PET  scan is stable.  

I can't imagine NOT having Doxil.  I am active, I enjoy my life, I am happy, I AM HERE....And yes.... I am so very, very lucky.  

I wish the best for your Mom. Negotiating cancer and chemo can be very scary at first. I can remember how excited and hopeful I was when I first met some long term survivors. 

I hope that my message brings hope to your mother...and to others who may read this column.  I would be happy to share more of  my experiences with your MOther (or with others) if it would be of help, provide hope, etc. 

Thank you so very much for your wonderful, upbuilding post.  We are currently waiting for Memorial Sloan Kettering to give us a opinion on her scans.  It was so nice to hear positive news and to hear how terrific you are doing.  We just hope that she will decide to do some treatment.  The doctor was a bit of a downer, so I really don't want him to be on her team.  We need positive attitudes like yourself.  Keep on doing well, and I will keep you and everyone in my prayers.  Thank you so much again!!!

vickijune said:

9 year survivor!

Hi.  So sorry about your Mom.  Please tell her that I am a NINE year survivor of ADVANCED primary peritoneal cancer.  During the 9 years since diagnosis, I have had several cancer debulking surgeries (that have included removing 18 inches of my small bowel, a couple of feet of my colon, etc.)   AND  7 years  (84 months!)    of chemo.  AND please let her know that I had  48 months of  Doxil during that 7 years.  I have been told that I MAY have the record for the most Doxil!  WOW...The things that some folks brag about....LOL!!!!  

Please keep reading.  This next part is really great.... I have NOT had any chemo....NO chemo...for the past 18 months and my PET  scan is stable.  

I can't imagine NOT having Doxil.  I am active, I enjoy my life, I am happy, I AM HERE....And yes.... I am so very, very lucky.  

I wish the best for your Mom. Negotiating cancer and chemo can be very scary at first. I can remember how excited and hopeful I was when I first met some long term survivors. 

I hope that my message brings hope to your mother...and to others who may read this column.  I would be happy to share more of  my experiences with your MOther (or with others) if it would be of help, provide hope, etc. 

I read your post Vickijune and you being a 9 year survivor gave me sooo much hope!

During all the surgeries you had, have you or anyone here had recurrent Bowel obstructions???

My Sister was diagnosed August 2012, first had chemo Carboplatin/ Taxol then debulking, then more chemo. Her CA125 went from 650 before surgery to 40 after the

chemo following surgery. but only 3 months later CA 125 increased to 120 and the ascites was back. So they started her on another chemo Topotecan HCL. And Just about the second week of that chemo tx she developed a bowel obstruction. After an NG Tube and 5 days in the hospital the obstruction resolved itself, Thank God

without needing surgery. One doctor said the cause was adhesions from the surgery, And another Doctor said it was the ascites causing the obstruction. They also said

she may in fact have recurrent bowel obstructions which is part of the Primary Peritoneal Cancer. Has anyone gone though these obstructions???

And just a few hour ago she was re-admitted for yet another bowel obstruction. I'm so depressed!!!!!!!!!!!!!!!!!!!!!!!! All I read web searching is that once bowel

obstructions start....... the prognosis is poor................... have you or anyone here hava any info on this??? I would greatly appreciate it.

God Bless you all

MJensen said:

Hi Angelique5,

I am sorry to hear your sister has to go through all of this.  It is an on going battle for sure.  I just wanted to mention that I have had several bowel obstructions and ended up in the hospital.  Most of them did resolve themselves without surgery but in Jan I did require surgery and ended upwith an ileostomy in my transverse colon.  They made a loop and the stoma is up in the left quadrant of my abdomen.  It took me some time to wrap my head around this but just deal with it now.  Mine were caused by the cancer and when I have the right chemo cocktail it has helped prevent further obstructions.  I was diagnosed with Ovarian cancer in 2010 that had spread to thru the peritoneal area.   Once the blockages were clearwaste Dr had me stay on a low residue diet.  I recently had another blockage in June but the new chemo I was put on cleared it without hospitalization.  I was also hooking to an IV daily ( at home) for hydration.  Hydration helps clear the blockage too.  I am currently going OK with no signs of blockage.  I am happy about that!  Prior to getting my ileostomy my surgeon had gone in laproscopically to take a look and see what was causing the blockage and it was clearly the cancer.  I also had a colonoscopy at the same time to check for adhesions.  The GI Dr removed any adhesions he came across.  I sope your sister can get through this one without major surgery but maybe a colonoscopy or laproscopic exploratory surgery might help determine the cause.  There are this root causes.  Could be diverticulitis....hope that helps.  Sending positive healing energy to all.   Michele 

Hello Michele,

Thank You for your response. 

This is her second episode of Bowel Obstruction and as you have experienced, Thank God this second one did resolve itself also.

You made a good point because she was told that the cause was more than likely the cancer and not adhesions. and we also noticed that when she's on the "right" chemo she does not have these issues. We'll have to talk to her doctor about the hydration at home.

I'm so glad you dont have signs of blockages and I will pray for your continued healing and health.

 God Bless and Thank you once again.....for taking the time to responde.

Angelique