Diagnosed 11/20/15- Metastatic Peritoneal Carcinomatosis w/ascites from 3C Epithelial OC NED 7+ months 3/25/2017 Keep the Faith!

For all the brave women (and their partners who love them) who sometimes feel there is no hope!!!! I was diagnosed with metastatic peritoneal carcinomatosis 3C OC with ascites 11/20/15. I have had primary chemo, interval debulking with radical open hysterectomy/salpingo oophorectomy/resected bladder, 14" of large colon removed/temp colostomy, splenectomy, omentumectomy, appendectomy, an ablated diaphragm, kidney tumors removed, intraperitoneal cisplatin/taxol chemo and dose dense carboplatin/paclitaxel (carbo/taxol) chemo.

Initially, I spent days googling my diagnosis. It was devastating. I could find no evidence of survival for my stage of disease-- so for all the newly diagnosed women, please understand that the data you find on the internet will not help you. Most of it is out of date. It's good to learn about your disease, but important to understand that what you need is the latest, most recent studies-- which can frequently be found on BioMedical Publications.

Most importantly, find the best gynecologic oncologist surgeon available. The quality of your surgery is a predictor of your outcome.

I completed chemo Aug. 10, 2016 and had a CAT scan that showed no evidence of cancer, I now have a low normal CA 125 level and am currently NED for 7 months.

On Oct, 24, 2016 I had surgery to reconnect my colon . It was a challenging ostomy takedown as many adhesions had formed which adhered my remaining colon to other organs. My surgeon prevailed, however, and the anastomosis has been successful. The lingering result, being minus 14" of my sigmoid colon, is that I now have bowel movements 8-12 times a day. This is not interfering with my life and I much prefer to use my natural plumbing over the ostomy bag, which did have a serious effect on my usual activities. The 6 biopsies taken during surgery showed no evidence of malignancy. I am currently in pathological remission.

Initially my 3C OC Diagnosis was dire. Ten years ago it would probably have been termed "INOPERABLE". I am now fine. I feel fantastic. If this disease reoccurs I will be ready to fight it again. Like all of us, I pray that I am CURED. I have now been given more TIME to live my life, to make a positive difference in someone else' life and to enjoy my beloved friends and family. So, please, know there is help. Know that it's worth fighting hard to be given more time on the planet.

With love for all of you. This journey is unpredictable and we need each other to stay strong. Tesla

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  • Hi Tesla, very inspiring post indeed and Congratulations and Jubilations.

    My wife was diagnosed high grade PPC 3C in Dec 2015 and is also a beneficiary of superlative debulking with Hipec, further to which she went through six rounds of pacli/carbo combination chemo, I V as well as simultaneous intra peritoneal chemo. PET CT and bloods (normal range CA125) cleared her as NED a month after her last chemo and this month viz three months post last chemo, her bloods and USG maintained her status quo of NED, (know here as "in remission" , although I prefer to use NED). Only tell tale signs are the hair loss (now growing back), fatigue and severe neuropathy in her feet. We have decided to move on now and hopefully, in next six months max she will get into her "new normal". Travels are scheduled Dec onwards so that we can continue the good life (fall back is that she can no longer hold her singular glass of red whilst I am on my malts). Yes, KEEP THE FAITH has been our mantra.

    Naimish

  • Sorry for my bad, earlier. The word used was "in complete remission". Btw, she was also suggested (optional) Avastin which meant another six months lasting unti Dec '16, but we opted out. Only time will tell if we took the right call on Avastin.

    Naimish

  • I would not add Avastin unless there is evidence of need for it! I am not aware of any studies that proves it prevents reoccurrence.

  • Hi Tesla my name is Cindy I have to agree with what you said about Avastin I had 12 sessions of Avastin & slowly watched my CA125 go up. It was when I had a CT scann that it showed that it did not work. I am back on chemo because the cancer has come back.

  • L-Glutamine powder helps reduce the neuropathy. 3 tablespoons in a cold beverage twice a day. Works well! Tesla

  • Thank you Tesla. Similar journey and diagnosis for me although your surgeries have been more drastic. Have to wait till 28th September for my final results but looking good so far. I empathise with everything you have said. For some reason I felt low yesterday and today but you've bumped me back up again. Yehaaaa. Xx

  • Thinking of you for your results on the 28th Sept Hun 😘😘

    Jemima xx

  • Your words, as always, are inspiring. To keep focused on 'cure' rather than 'maintenance' is key, really - got to be believe in it. I wish you and all the other ladies well.

  • Gleedy, I have a friend with the same diagnosis as mine. She is in her 7th year of "remission". She has not had any reoccurrence. This is important to know, because no one tracks OC survivors!!! My surgeon introduced me to her before I started treatment!

  • That's so good. A great surgeon to inspire you in that way. Xx

  • Great news for you.I am not sure if you are aware that we are put on a register unless we opt out.What happens to that I am not sure of.My friend's sister was diagnosed with OC over 40years ago and her GP surgery is contacted yearly.

    Take care x

  • Howick01, I am in the US and it's unbelievable that we do not track survivors of anything other than communicable diseases! I joined this forum because it's the best one I could find. The US one, "Hystersisters" is a commercialized site that tries to sell you products! Tesla

  • Hi I thought you are in the US because of the way you wrote the date but did not want to be presumptuous !

    There is team inspire and also a site Gilda Radner set up in US.

    Wish you all the best x

  • I found this site by accident. I also live in the US.

  • Hi Tesla, I'm inspired by your post what a journey you have been on. The results are fantastic.

    I wish you well for your future and I'm there with you as I too finish chemo next week having been told I have no disease left and a low CA125.

    Love Ann xx

  • I too have ppc, had three lots of chemo the debulking then three more chemo , that was last year, finished chemo last Nov. Had scan showed ned, but was also having avastin carried on with that till early this year. My c125 had risen quite a lot and the tumor had moved to the lining of my bowel was told by my oncologist I couldn't have surgery. Was then put on caelyex, but that wasn't working so now back on weekly taxol for eighteen weeks. Had my third one yesterday, see my oncologist 9th of September. So praying this is working for me. You have been through so much, I wish you well for your future. Xx

  • Juliette35, I would get a second opinion about that tumor on your bowel. It may be possible to have it removed. I had 14" of sigmoid colon removed and a temporary colostomy. Please consult another surgeon. Removing that piece of my colon saved my life. Best to you, Tesla

  • Ann, there are women who actually get cured of this disease even at stage 3C!! Doctors will never use the word cured because of the high rate of recurrence. I believe that eliminating stress is part of staying healthy. Sometimes we need to make serious changes in our lives to reduce stress. It can be extremely difficult, but anything is possible if one keeps an open mind. I enjoy every moment of every day. I especially love ordinary, peaceful everyday life. My favorite coffee, fresh strawberries, the smell of my husband, dishes in the sink that need washing and taking out the trash on garbage pick up day. I am in love with the process of living. Best to you, Tesla

  • This is so inspirational. Great tip on the research pointer. Yes even when we consult Dr. Google in the middle of the night we must be careful about dates and sources. Also to thank and then dodge informational and web links from caring friends about how chemo doesn't work but some diet will. Congratulations for a tough but positive attitude. A truly amazing story. We are proud of you.

  • Hi Tesla and everyone else dealing with PPC

    I was diagnosed with High grade PPC with 8 litres of ascites in 2011 which was inoperable I presume and was put on 6 sessions of Carboplatin and Taxol . My CA125 was over 8000. By the end of chemo I was declared. NED and normal CA 125 until Mar this year when a CT scan showed slightly swollen peri aortic lymph nodes. It was decided to wait until July this year when they had swollen more so I started Carboplatin 3 weeks ago. I only went on this site 2years ago and began to read that most if not all women had debulking surgery. My million dollar questions for all of you are :

    1 : I understood that Cancer was either Primary or Metastatic . Surely it cannot be both or I have misunderstood everything for the past 5 years. I am open to correction on all of these questions.

    2. If you don't have debulking surgery are you a lost cause or is there anyone else even out there like me who only had chemo. I might add that to me the drastic surgery sounds absolutely horrific and I cannot even begin to imagine how I would feel faced with such surgery .

    3 . As I only had my 88year old mother for whom I was a full time carer, I attended most of my treatment sessions and check up appts alone. I read up as much as was available then on PPC. There was very little and most of that was depressingly pessimistic. If I were to believe any of it I should have passed on by 2013.

    4 . Am I just unique or even a miracle if I have survived so far without debulking surgery ? I have begun to get slightly jealous and neglected when I read only of debulking before or midway through chemo.

    5 . I have asked some of these questions before with very little response. Maybe I am just unique !

    I would love to hear your opinions. Good luck to all of you.

    XXX

  • You deserve a bloody medal!! What a trooper & great post to inspire us all.

    Praying you have a long & happy 'C' free life ahead!

    Good luck for your op next month too 😘

    Jemima xx

  • MollyO, OMG!!! You are atypical. It is amazing that chemo stopped your cancer! This means that you did not NEED debulking, which is a good thing. Cancer can indeed be primary and metastatic! Or I have misunderstood this for 10 years when I had breast cancer. Primary simply means the source of the cancer, metastatic is when any cancer spreads. Since you were diagnosed with PPC and NOT ovarian cancer, that means the chemo killed all the cancer in your peritoneal cavity. You are a very, very lucky gal!!!! Tesla

  • Thanks Tesla and you have just made my day. I just sent you an apologetic reply after my first one as I was afraid it would look like I was bitterly getting at you and it wasn't meant to sound like that at all. I just think that you and the others are true heroines. I was just afraid that I wasn't getting the best option ! I suppose you could say I was jealous even though I would cringe at the thought of surgery. Plus I wanted to find someone like me !

    Take care and happy days !

    XX

  • Thanks Telsa

    I did send a second apologetic reply to you as I was afraid you may think that I was getting back at you but nothing could be further from the truth . I think you are a wonderful poster and so helpful on the forum. As I said in my second post I admire the bravery of you and all the others who had this surgery. It would scare the hell out of me . I am basically a bit of a coward . I just really wanted to know how many of ME are there out there ?

    Don't forget us and sail off into the distance !

    XXX

  • MollyO, I am not brave. I was petrified. I was fortunate to have a very empathetic doctor who desperately wanted to help me. I did what I had to to stay alive. You can do it too!! Love, Tesla

  • Hi Tesla and MollyO - I am also in this category (MollyO we talked about it before) - no surgery thought have been reviewed 3 times. I am 3c OC but they did wonder initially if it was PPC as it was all through the peritoneum. They say it is too risky to bowel to operate and that I am a very good responder to chemo (ca125 down from 13000 to 20!). On Avastin, virually nothing to see on scan, but now a year on a rising CA125.I am going to pick up on the no surgery being a positive as you say, Tesla, although it feels odd not to be 'debulked' like others. I lead a normal life but have cut out the things that make me stressed. I'm scanned and reviewed every 3 months. Thanks, Tesla, for your inspiration.

  • harpist, Have you gotten a second opinion? Your total response to your initial chemo is excellent!!! The fact that nothing shows on your scans is also great. If you've not had surgery, did they do some sort of biopsy? How do they know exactly what it is? My PPC is actually OC that metasticized.

  • Yes, I had biopsy before treatment last November - and I'm officialy 3C serious high grade but considerable mets in peritoneum - so I guess I'm the same as you. I'll be asking my onc about the latest decision - and yes, considering a second opinion at some stage if there are still queries on my part.

  • Fantastic new! I have metastatic peritoneal stage 3c Oc too, waiting for my op next Thurs, and your post makes me feel like there is hope! Congrats to you and yours, hope you have beaten it for good!

    Take care

    Penny xx

  • I also have 3-c high grade I just got done with the 16weeks chemo. I have a ct on Wed. Scared I am having a bloated stomach and my CA-125 went up to 404

  • Tesla, thank you for writing such an honest and inspirational post. Sometimes I can be a little gloomy and posts like yours really boost me.

    Best wishes, T. X

  • Amazing Tesla!

    I only had stage 1c,debaulking and chemo and so far all good.You are inspirational and I wish all who have just been diagnosed and think OC is a death sentence could read this as it would give anyone hope.

    I pray your run of good luck continues and so does your zest for life

    Carole xxx

  • Hi Telsa

    I am sorry if my reply sounded like a rant back at you. I loved your post and I stand in awe of the bravery of you and all the others who had this surgery .i think I would have been very much a coward ! You are also so very helpful so many times on this forum . It's probably that I feel so isolated in appearing to be the only one with chemo only ! Keep on posting your positive messages. It's so lovely to know there can be happy endings. I wish you all the best for a long healthy life where this disease is only a distant memory

    XXX

  • Brilliant post Tesla, glad you are doing so well. Kathy xx

  • Wonderful, wonderful news. It is good to read of your success ... It gives us all hope. God bless. Xxx

  • Fantastic post Tesla

    I too have had chemo optimal debulking my appendix removed , but not a patch on what you have been through.

    I have my last chemo next Thursday and although I can't wait to start leading a new me, I am very aprehensive as to whether it will reoccurr, but your post has inspired me and I am certainly going to live life to the fullest, and also do those things I've always been to busy to do.

    Enjoy your travels Ellsey xx

  • Hi Tesla,

    Brilliant post, peppered with enthusiasm and optimism!

    I was diagnosed as Stage 4 because of spread to the lung with a pleural effusion and CA125 of 2400+). Four litres were initially drained off with a further two litres through hospital delays in referring me for chemo.

    After kicking up a stink, I was referred to The Liverpool Women's Hospital and a fantastic Gynae team.

    I had four rounds of Carbo/Taxol, debulking then two rounds of chemo. Surgery removed most of the remaining disease and my final scan showed 'clear'. I'm optimistic too, although there is a slight shading under my right lung and my CA was still raised (210) but the Oncologist stressed I was not to worry as it could be inflammation from surgery. i wonder though could this shading be the cause of the raised CA125...😐 hmmm.

    My process thus far has been relatively uncomplicated and I am very grateful there were no complications during surgery, and that I avoided a colostomy bag. Still, the Stage 4 thing niggles the hell out of me.

    Debs xx

  • Hey Debs, Wow! you've been through the wringer too! I like your spunk!!!! Your upbeat self is an inspiration to me. Kicking up a stink is absolutely necessary. Since I'm not a doctor, I had no way of knowing that if I had demanded a CAT scan they could have found this cancer a year and half earlier at stage one or two!!! The American medical system, while at times working miracles, has serious flaws which can cause harm to patients. I could rant about this for DAYS!!!! So, my experience has taught me that if I don't advocate for myself, no one else will. Keep pressing your oncologist for answers. Meanwhile, it sounds like you are enjoying life with your hubby and seizing the day when you can! Love your eyebrows. Right now I have one and a half eyelashes, no eyebrows and all my hair has grown back completely white! Tesla

  • HI Tesla,

    I rave about NYX eyebrow palette for good reason. It's brilliant and as cheap as chips. However, I have only today discovered their eyebrow gel in a tube, which is even better. Seek it out..

    Debs xx

    PS: I had a few run in's prior to referral. I was in a local hospital where it took four days to attempt to drain my pleura. I could hardly breathe. It was surreal.

    That said, although I have the utmost respect for my oncologist, I do want more answers. I have a follow up appointment with my specialist nurse and will discuss my issues with her. Hopefully she will convey my worries to him.

    I hope so.

    Debs xx

  • Such courage and bold spirit you have shown! truly inspiring to read posts like this. personally preparing for a battle of possible recurrence but still praying confirmatory tests would prove otherwise. long may we continue to fight with courage and faith :)

    God bless.

  • Hi Tesla, I live in Australia. This forum was the best I could find as well. Good luck going forward. Sharon

  • Hi Tesla what you FACED is tremendous. My stomach is now more bloated and I am getting more pain. I have my CT scan on Wednesday at 8 and then go back at 4 to meet with my Dr. I told all of them my nurse nurse practitioner that I was having this issue. So now my tumor marker went up from 111 to 404. I have already mentioned this but I am very nervous and thinking my cancer has spread. I was up at 1 this morning with the pain and had to take 2 extra strength Tylenol. My stomach looks like I am 3 months pregnant. When I was first diagnosed I looked 9 months. Anyways I guess I was hoping for a different result then this at the end of my 4 months. Any suggestions?

    Thanks so much,

    Mary

  • Mary, chemo can give you horrible abdominal pains. It should also eliminate the ascites. Wait for the CAT scan results. This could be cell lysis. When massive amounts of cells die it is possible you may be feeling that. You have not had surgery yet, right? Hang in there. Tesla

  • Yes I did have surgery in March. I had everything taken out and my momentum. I was diagnosed with 3-c ovarian cancer. I have the hi grade

  • Omentum*

  • Mary, my CA125 went up during chemo, but about the 4th treatment started to plunge downward and kept going down until normal. Now that chemo is over, I pray it stays down. Tesla

  • Mary, With the latest CAT scan your doctor will have information to make any modifications in treatment. Sometimes gas pains are excruciating after the surgery we've had. The important thing is that your doc is paying attention to you. Tesla

  • Yes I had to go in yesterday and they prescribed me pain meds. My stomach is bloated, not right. I have been having stomach problems for about 3 weeks now. I have told them at first they told me due to all the chemo. Then my Dr told me to get Prilosec OTC. Which I did. It helped somewhat. Now I can barely walk straight and look 3 months pregnant. I have My CT on Tuesday now and then will meet with my Dr

  • Wow Tesla!!!! Your post is so inspirational. It gives me the strength to move forward and face whatever comes my way! You are a true warrior!! I wish you all the very best with your upcoming surgery. Kim xo

  • That was an amazing post and all here will gain so much from you sharing your story, thank you. Xx

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