Peritoneal cancer

I finished 6 months of chemo in May 2014 after having debunking surgery for peritoneal cancer. I was stage 3 and my ca125 level was 3000. It's been a rough road but I am cancer free for now. My level on last checkup 6. I feel good but am having some down days where I can't shake the feeling that it will come back again. I am told that it's normal to feel this way sometimes. I was positive throughout my treatment and even broke my pelvis 2 weeks after my last chemo treatment. It was so bad I couldn't walk. I made it through that with flying colors and proved to myself that I'm a fighter. That's why I don't understand why I can't shake the fear. I would like to know if other survivors have felt this way. For all who are going through their treatments please keep the family, faith & friends close for it will help you tremendously.

36 Replies

  • No wonder you feel like this after all you have been through and also at this time of year. Soon the days will get longer ,snowdrops will pop through and things will look much brighter, in the meantime just spoil yourself a little and have a few duvet days. Gillx

  • Hi

    I know exactly how you feel because having been diagnosed with stage 4 OC and having everything removed plus the omentum and peritoneum in May and also 6 lots of chemotherapy I also have my 'down days' but soon as they start I think of something nice I've done or just go out in the car and mooch about the town near me window shopping or treating myself to a nice cup of coffee. It is very hard to not think of it all the time and it is always there but I think it will get easier as time goes on but no matter how much friends and family encourage you it still feels like a death sentence. I think it is because it has been fairly recent for you and I and I find it hard to plan ahead but I am told that this will get easier and only time will do that. Like you I have been staying positive throughout and feel proud of myself for getting this far.

    I had a recent scare before Christmas but it was scar tissue causing the pain and my oncologist phoned me late on Christmas Eve to say that my scan was clear what a relief! My CA125 had gone up to 45 from 23 but she said I could have had an infection and I realised that I did have at the time of my blood test - a sinus infection, something totally different and I was also told that any pain could make it increase. My CA 125 was 6000 this time last year so a drastic reduction! I am seeing the gynecologist and having another blood test on Tuesday next so they are certainly looking after me.

    Just keep thinking positively and remember we are all in the same boat and there are so many others who must be feeling the same as us.

    Keep smiling and chin up!

    Best wishes


  • Lfe is a sexually transmitted terminal condition so, in a sense, being born is a death sentence. At least we know what will kill us as long as we avoid accidents! All we can do is live as well as we can for as long as we can!


  • Thanks Barbara for your kind words. I wish you much luck for your appt on Tuesday. Hope all goes well. Keep me posted if you're up for it. Cheryl☆

  • I do not know if this will help you but when I finished my first lot of chemo in 2010 I had nights like you are having. I had been told my cancer was treatable but not curable so I was expecting recurrence. I decided to accept that it would come back and each time it has I have endured the treatment, looked for the positives (steroids- no wrinkles, hair loss? No need to shave my legs and a free Brazilian!) when I am down - and it still happens - I play a moving CD and cry! Very cathartic tears.

    The longest period of remission was 18 months and I had a breast lump in that time. I have had 5 rounds of chemo, a further op resulting in a colostomy, a very bad reaction to Caelyx last summer, allergic reaction to carboplatin and a spell in hospital with septicaemia and the tumours are growing again! I am waiting to see if there is further treatment and hoping for inclusion in a trial!

    My toast on NYE? Here's to 2016! (Not a mis type) i live alone, my children live a long way away and my daughter tells me I cannot be ill or die before the election and I have theatre and opera tickets booked through to September. I do not give in easily and I have a great group of friends who help me to keep going!

    Fear is normal but I do not give in easily and I try to find something positive every day! The exhaustion and tendency to fall asleep is a nuisance but I record everything I want to watch even if I am watching it then I can go back and ensure I do not miss things. I have a blue badge for my car so friends are glad to give me a lift for the convenience of parking. Hairdos are cheap because I keep it short and my grandsons have taught me the use of gel!

    Life is good and I am not yet ready to give up on it! Perhaps it is easier at 74!

    All I can advise is roll with the fear and despair, have a good howl every now and again then give it two fingers and wring every bit of juice out of everyday! I find it much better to be able to blame the chemo for my infirmities than admit to old age!

    I hope that you can come to grips with the inevitable despair and just enjoy living while it is still good.

    As the song says - accentuate the positive.......!

    I don't suppose this helped you much but it reminded me of how much I have to be thankful for!


  • Well said Margaret !! I need to get abit more positive myself, I think that will be my New Years resolution. Good luck , Trix

  • Margaret , thank you so much for your terrific posting are wonderful in your positivity, such a survivor and role model for so many of us ; for me , there is an absolute truth in all you write .

    The having a good howl is very good advice many think in terms of the stiff upper lip .

    in some respects we might feel lucky to be alive , living with cancer , lucky to have treatment at all ...and that howling is not on !

    But it is , along with jumping up and down when CA lowers or told treatment is holding

    the bugger back ; so why not howl ?

    I too feel that life is a sexually transmitted disease , an expression I use I lot .

    We have an expectation of living a long life these days , forgetting that life expectancy was in the 60 s when the welfare state was in its infancy . No one wants to leave the party early ...but leave it we must .

    I really hope that you get to use those theatre and Opera tickets and that 2016 will indeed shimmer into view !

    My very best wishes ,


  • Love your attitude Margaret. Thanks for the support. I was wondering how long ago was your original diagnosis for the peritoneal cancer.

  • I was diagnosed with stage 3c agressive adenocarcinoma in Sept 2009! Tumours throughout pelvis & abdomen and omentum! I have since had a further pelvic tumour 10cm x 7cm and now 5 smaller tumours in abdomen and pelvis. Growing but still smallish - around 3.8 cm. Attached to bowel liver and spleen.

    Margaret (AKA bolshie old cow)

  • Thank you Margaret for this wonderful post! You are an inspiration. Nina xo

  • My wife as peritoneal cancer with a CA 125 of 1300 at stage 3c. She as started kemo and on her second one, think she is down for 6 in total and then down for surgery, but she struggles to get going for a week after kemo, is that normal

  • Of course it is normal! I finished Caelyx in August and I am only just getting back to "normal" my 1st 2 lots of chemo I was wiped out for a week and not brilliant for the next two. It took several months to get over the sheer exhaustion each time and the last was worst. I am still ready for more though!


  • Love your comments Margaret - made me laugh out loud! A big 2 fingered salute to it all ( a Winston Churchill I call it ) - let's celebrate life!

    Maz xx

  • Yes it is normal but the chemo affects everyone differently since it's made specifically for each person. They have nausea medicine and I got through my chemo without vomiting. Yeah! I did run to the bathroom quite a bit but they had taken a portion of my colon out during my debunking surgery before I started the chemo. I was fatigued and slept alot. I did manage to work during most of it but I definitely had chemo brain. Trouble concentrating so I had to leave early most of the time. Give your wife my best and let me know if I can help with any other questions. Cheryl ☆

  • It's been awhile. Wondering how your wife is doing?

  • Thank you all so much for your thoughtfulness. I shall as always try to stay strong. It definitely helps knowing that there are others out here who understand. I wish I would've found this site earlier since you definitely help one another. I will keep you all in my prayers and check back with you often. Cheryl ☆

  • A big hello to you and yes - I think what you've described is entirely normal! I had debulking surgery in may 2014 for stage 3b OC followed by 6 cycles of chemo which finished in November 2014. Like you I was able to keep pretty upbeat during treatment but have gone a bit to pieces since treatment stopped! Other ladies on here have said it's normal - I think we all have such a security blanket when bloods are being checked every 3 weeks and then suddenly we're pushed out of the nest as it were!

    My advice would be to try not to dwell and try to fill your life with things you enjoy to do - I think as ladies we try to protect everyone elsewwhich is so hard! Lots of thoughts and positive vibes your way!

    Maz Xxx

  • Thanks for the encouraging message. I find that I am at least ten times more emotional since my diagnosis. I am trying to live every day with the most positive attitude. Your words help.

  • I finished my last chemo 7/11/14. I was so afraid prior to my 1st follow up 11/7/14. I was weepy much of the time. I had held a positive attitude all the way thru chemo. I was afraid it was back so soon. I was stage 4 OC. I think I got so used to the appointments & being monitored so closely, that when I had to go 3 months without seeing anyone, I freaked out. My next follow up is a month from today. I'm hoping as it draws near I don't start falling apart again.


  • Oh my gosh that is exactly it. I feel the same way about being monitored. It's lonely not having everyone looking after me. Sounds weird but I miss it. My next check up is in February. I hope your appt goes well Patty.

  • Hi Cherbear! Congratulations on your successful treatment. That is fantastic news. You have had a rough road with your hip on top of everything. I think fear of recurrence is very normal. 3am "creepytime" is the worst for me. When that happens, I pick up a book and start reading. Scary goes away every time :) Nina xo

  • Thanks Nina I'll try that.

  • I really don't know if we ever will shake the fear but we cannot let it suffocate us. I am stage 4 but doing really well and still get that overwhelming feeling of fear that grips me. Thankfully I seem to distract myself and get back on track again. I am definitely more emotional since diagnosis, my kids now say with a smile here she goes again if we are watching something on TV !

    I love all the comments on this thread, they made me laugh and cry. The support on this site is amazing, it feels so good to be connected to others that have experienced what we are going through, it makes me feel normal ! xo

  • So nice to hear from you. It makes me happy that you are doing well. This is a great site but I am still trying to navigate to find people's reply without having to go to the end of the thread. Any suggestions would be helpful.

  • It is okay to be scared, reading your post, you have been through a lot. We all hold the fear that it will come back and some times we let our minds over run our bodies. Treatment finishes, hospital visits lesson and we are all left drifting on our own. Then to cap it all, you broke your pelvis, so you are indeed a warrior. If you have an understanding gp do go and talk to him or her or if there is a cancer support group near you or the macmillan centre contact them and they will talk to you also. Wishing you a good year,

  • Thanks for your great post. I have talked to people but I think that if they've never been in this situation they don't fully comprehend what I'm trying to explain. It could be that I don't say what I'm feeling so that they can understand. I'll work on that. Take care.

  • Cherbear, you are fine, please keep reminding yourself that you are healed. I finished my last chemo on Wednesday willgo for a review then will start the next regiment of treatment, I know I have a long way to go but I on confessing that I am fine and healed

  • Thanks. I am glad you are doing well. I try to remember that each day is a gift but working 12 hour shifts doesn't give me much time to relax and center myself. I wish you much luck in your future treatment. Keep up the good fight!

  • Hi

    My wife is on her third kemo lost her hair but as a rash all over her head, is this one of the fallout from the kemo and can it be treated

    ken xx

  • Hi Thorntke,

    I found the hair fallout quite painfull as my scalp was so sensitive and had a light rash afterwards I used a dry skin lotion on it and wore soft cotton caps after a few days it was fine. I hope this helps and big hugs to your wife xox

  • Hi

    my wife as just had her 3rd kemo for OVC and she was told her CA125 is at 750,asume that is good as it was 2200, the problem is she as been told he calcium level is high, is this usual while having kemo as i believe it could be dangerous

    love xx

  • Hi cherbear 56

    my wife as now finished her 6 kemo treatments and her ca125 is come down to 375.. She did not want the surgery as the cancer is quite wide spread, the bowel would have to come out and part of the liver. It is also on the peritoneal. She would also be in intensive care, the nurses said if she came through it the cancer would come back. So we have decided for her to have what quality of life she can have, and have the avastin to try and maintain it as long as possible. So I am taking her on a cruise on the 20th for 2 weeks which she will enjoy, and then take on board what ever this horrible desease throws at us. I just dont know what to expect what is coming

    love xx


  • I am so sorry you and your wife have to go through this terrible ordeal. My prayers are with you both. I hope you have a wonderful time on the cruise. I am in remission for noe but i know the day is coming for me too. I'm so glad that your wife has someone loving and caring for her. I will keep you in my thoughts. Cheryl

  • I Cheryl we had a good time on the cruise, my wife slept well and got plenty of rest as she as not much energy while on the drugs, but at least she had a break away from hospitals and she is at home enjoying every day as it comes. I just hope she as verylittle pain as it takes over. Thankyou for you concern and hope you are enjoying life to the full Love Ken xx

  • Ken I'm so glad you two got to spend some great time together. I'm glad she got some well deserved relaxation. And you got to spend quality time together. Please take care and I'll check on you two soon. Prayers to you both. Cheryl

  • I don't see this mentioned yet, so I will just throw it out there. I was diagnosed with peritoneal ca IIIc, and went 4 rounds of Taxol and Carboplatin, with rick simpson oil (yes--marijuana!) with the ok from my oncologist. I don't know what to attribute my test results to, so I give everything credit. I went from a CA 125 of 495 at diagnosis, to 42 after the first treatment which my oncologist called a "remarkable response". I had debulking surgery at UCSF, which was "98% clear" then three more rounds of chemo. My guts shut down, and I was in the hospital for 4 days while they tried to figure out what to do with me. I finally escaped, literally walked out, with a nurse running after me, and went home to take care of myself. I'm fine now, walking/jogging 11/2 miles, and doing yoga and eating organic etc. My Ca 125 has gone from a low of 3.7 to 4.1 to 13. I am not liking the 13, it is anxiety producing, but keeping up with the activities and keeping busy. I don't forget EVER to take my CBDs and Rick Simpson oil. The evidence that this works is all anecdotal, but I feel like I am doing something that might help, and will definitely not hurt.

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