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No sign of recurrence for 10 years

Sparkie8410
Posts: 1
Joined: Feb 2015

My mum has been very fortunate. She had two experiences of peritineal cancer, despite having had a hysterectomy. The first was very serious and a tumour had ruptured. She looked pregnant.  When it was removed she was told it was the size of a small football. She was in hospital for some time and required chemo afterwards as the tumour crumbled a little as the dr removed it. They were concerned as part had attached to the bowel but he managed to save her bowel. She began to get better and the horrible sude effects of the treatment faded and she became more like herself but the cancer appeared again within the year. They tried a different chemo where she didn't loose her hair. She responded better than expected and after the full treatmeant she was told the cancer had shrunk to a point where it was insignificant. She was sent away feeling very lucky but having been told by the doctor that it will come back.?She continued receiving regular checks and gradually it seemed that the cancer simply disappeared. Her scans and bloods have, for some time now been clear. She was told she will never be 'in remission' so to speak. however, its her ten year anniversary this year. She's been without cancer for ten years and the doctors say by all accounts you wouldn't know she'd had cancer. That's not to say she can let her guard down. i dobt think we ever will. The dr says he's in uncharted territory. That there's perhaps less than 30% chance if it recurring and every year that will go down and down. I wanted to share this to give others confidence and to see if anyone else has experienced anything like this length of time with no recurrence. Thanks. 

Robyn Angela
Posts: 9
Joined: Oct 2013

Wow! This is truly wonderful to read! We all need some more hope that there are survivors out there

Welshchick's picture
Welshchick
Posts: 4
Joined: Mar 2015

This is so inspiring.

I have colon cancer that has spread to my Peritoneal and i am now undergoing chemo.

I was quoted four years and my life fell apart.

 

Seeing this has given me such hope. I am 49 years of age and was I thought in good health.

 

Thank you for sharing this with us today.

 

 

Diane 

abrub's picture
abrub
Posts: 2103
Joined: Mar 2010

you need to look into HIPEC or other Intraperitoneal chemo.  I had extensive peritoneal spread of my appendix cancer, and had IP chemo at Sloan Kettering (NYC).  I'm now 8 years out from my diagnosis, and all is well.  You need an expert in this aspect of care.  Of note, the onc I saw who was not a specialist in peritoneal spread "gave me" a maximum of 5 years. 

Alice

Cessily6485's picture
Cessily6485
Posts: 6
Joined: Sep 2015

Hi,  I am very glad to read your posts again.  I have been looking into HIPEC.  We now have a specialist from MD Anderson TX in our region now, specializing in Peritoneal HIPEC surgery.  I am considering it.  I have been told it is very high risk.  Please tell me how the surgery went for you, how old were you, did they remove all your peritoneal and do the heated chemo bath?  I hear it can affect your heart and lungs.  What is your experience.  I am 68 and have done well with now my second round of chemo in two years.  My C-125 have remained below 100, and yet it grows very progressively.  I would like more than 5 years of life, I am a caretaker for an elder husband.  I need the 10 plus years.  Please email or post.  Thank you!  Cessily

Welshchick's picture
Welshchick
Posts: 4
Joined: Mar 2015

I have peritoneal cancer stage four and was told they had removed 98% and that it had not gone into any vital organs and that the cancer that was left was so small it didnt show on the scans.

However they then advised I would never be clear of it and then quoted me 2 years to live.

 

I was 49 when they gave me that news and my world crash - I am currenlty recieving chemo every two weeks and so far tolerating it well.

 

I get re scanned in June and as you can imagine feels so very nerous.

 

Your message was so positive it made my day and i just wanted to say thank you.

 

take care 

Diane 

Cessily6485's picture
Cessily6485
Posts: 6
Joined: Sep 2015

Hi Diane,

I am sorry for your news, but encouraged by your good response to chemotherapy.  I am 68 and my Dr. feels that because I tolerate chemo well, that I can be one of the 26% that live beyond 5 years.  

Statistics!!  Don't live by them.  Set your mind on your goals, keep up treatments, good eating and exercise. The two years is a "mean" or average of people of all ages and health conditions.  You look strong, like me. Think of living beyond 5 years (74% of PPC), and be a part of the 5 or more group (26%).  Now we can have hope with HIPEC done by very specialized Doctors.  We have one in our area Detroit MI (Grosse Pointe) at St. John's Providence Hospital, Dr. Barri.  He is a graduate of MD Anderson Hospital TX (Cancer Research).  I am checking him out now.  The woman we are responding to Went to NY and I heard of one in Florida and California.

I was just a part of a new study drug.  An antibody....Farletuzumab by Morphotek,Inc.  A very promising area of new drug developments besides the ones that are associated with DNA.  

Let's keep hope that we are on track for new ways to keep our lives in tact and enjoy them.  Be Well!

 

 

Welshchick's picture
Welshchick
Posts: 4
Joined: Mar 2015

Hello Cessily,

 

I had great news three weeks ago after 6 sessions of chemo and the latest scan i was told that all the signs of the cancer had gone and my oncologist said he hoped not to see me for a very long time.

However, the past few weeks i have been in a great deal of pain and they do not know why.

I was scanned again last week and will receive the results on Monday .

 

Fingers crossed it is just scar tissue .

Please let me know what you find out about HIPEC - i have been to a specialist in regard to this treatment who first wanted us to get control of the cancer.

 

Take care

Diane

x

jaymiecindy
Posts: 6
Joined: May 2015

Thank you so much for your post! My mom was diagnosed in May of 2014. She had surgery and chemo. Her CA 125 was down to 5 in March 2015 and now in May 2015 she was told her CA 125 is up to 70 and she will start avistan today. I'm praying for the same results as your mom. Your post gives us hope! thank you!!!!! 

Cessily6485's picture
Cessily6485
Posts: 6
Joined: Sep 2015

Sparkie,  Thank you for this news of your mom's 10 year anniversary of being in remission.  I met a woman who was now 14 years cancer free and had a similar scenario, A contained tumor removed and given chemotherapy.  I think those who have ovarian cancer like this have great hope.  One other friend had the same story, but a couple years later got breast cancer, both were treated and now she is 5 years free of both cancers.  These are the stories we love to hear and are grateful for your sharing.  

cjeanfb
Posts: 1
Joined: Dec 2011

Loved reading about your mother's good outcome.  I had debulking surgery including removal of transverse colon, part of pancreas, spleen, omentum, etc. in 2011 followed by a clinical trial (palitaxol, carboplatin, avastin).  18 months later a recurrence with additional tumor removal followed by another round of chemo (paclitaxol and taxotere).  Happy to say my CA 125 is remaining in the 17 area and no obvious cancer.  I have experienced pulmonary emboli, peripheral neuropathy (both hands and feet), seem to accumulate fluid in my skin, hair returned after first round of chemo but not after second (miss those eyebrows, lashes and nasal hairs!), but seems an OK price to pay for feeling well and being able to function well again.  I will be hitting the 5 year anniversary this coming January and hope that more of us live this long.  Thanks again for the uplifting report. 

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