Primary peritoneal cancer

Hi

Was diagnosed with ppc stage 4 in May. No symptoms whatsoever. Admitted with bowel obstruction. Had 3 lots of chemo,debulking surgery then 3 more chemo. Now on avastin

The last months have been an unbelievable roller coaster of physical and mental feelings.

Just need to be in touch with women in a similiar situation. I'm married with 4 fabulous daughters and 7 grandchildren.

26 Replies

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  • I dont have PPC just OC. A Cancer diagnosis is devastating because the life we had is changed. We enter hospital and doctor land and that is our life for almost a year or more. I understand totally what you are saying, it is an emotional roller coaster or sometimes a merry go round without the fun. You are finished chemo now and on Avastin. I finished a course of Avastin last October and it does have side effects. Loss of appetite, lethargy, joint pain sinus problems and maybe tummy upsets now and again. I would suggest you see your Macmillan Nurse and check out support groups in your area, I found them invaluable. This site is also very supportive as we help each other along the way. There is also an Ovacome Nurse or Helpline you can ring. It is normal to feel fed up after finishing Chemo so then is the time to look for assistance. I hope you will get some more answers as I have said there are lovely ladies on here. My advice is to be kind to yourself, dont be giving out that you can no longer do heavy housework or gardening, remember you can do only what you can do, Mind yourself and take care

  • Thanks for your comments. You're so right about positivity. It's good to have on line support as well

  • Hi Chamber,

    Suzuki is right, you need support locally as well,no one knows what you are going through like others that have been there.

    We are always here as back up and there have been times this site has been invaluable.I have myself just had OC and am in remission, also had debaulking surgery and yes it is a roller coaster of emotion, but, we are all still here despite that, so I don't like to say welcome,but it's good to have another brave lady in the club!

    I have a lovely daughter and son and a grandchild that quite frankly has kept me going through it all, he is my little mate, aged 2!

    Keep going and keep in touch,

    Wishing you well,

    Carole xx

  • Thank you so much for your reply. Just good to know there's support out there

  • Thank you so much for replying. It's just comforting to know there's support out there !

  • This could have been written by me! I was diagnosed Jan 8th after going to docs with bowel problems. I'm on my first cycle of chemo with weekly taxol. My future treatment plan mirrors yours. I'm glad you have got through it. I'm trying not to think about the surgery. I hope you feel well. Tracey

  • Good luck. Keep strong and keep in touch !

  • I will keep in touch. I'm sure we can rally each other x

  • Hi welcome to our club, the one that none of us really wanted to be a member oif. You will find lots of support and advice on here. It definitely is a roller coaster ride of emotions. I found that I went from surgery to recovery to chemo appointments and didn't really get time to process it all until my treatment had finished and then I went into melt down! There ius help out there though, I good counseling and found it a great help to me. I think we have to stay focused and positive, I do believe that helps. Be kind to yourself too. Enjoy your family. I live to are my daughters and grandchildren. Ann xo

  • Thanks for your comments. Good to know there's on line support as well as friends and family !

  • Hi. I like you was symptom free when I was admitted with perforated bowel. July 2015 ended up with colostomy but it saved my life which I am forever grateful. I have had since October 6 courses of carbo / taxol my last scan showed no obvious cancer so no op at this stage . I am now to have 12 treatments of Avastin so hope things continue well It has been a roller coaster of nearly a year so many emotions going on, but I have stayed positive with the support of family and friends. I try not to worry about the future and enjoy the day Try to stay positive and enjoy, I do find writing a diary helps, you look back and wonder how did I do that. Wishing you well xxxxx

  • Thanks for reply. I think the support of family and friends really helps. Good to know there's on line support as well !

  • Hi chamber I too have ppc stage four. Same as you was admitted for a bowel obstruction then had three lots of chemo then debulking then three more chemo. I am now on avastin till October, started it on my fifth chemo, that finished in Dec. I could not get my head round the fact that I had this disease as I had always been quite fit and only been in hospital when I had my boys. Like you I have seven grandchildren, . I am trying to be positive and also I have my faith and also talking to others on here, you feel like you are not so much alone. Please keep in touch. Love and hugs and God bless. Julie xx

  • Hi

    Thanks for your reply and keep in touch

  • On the subject of Avastin. I tolerated it well but did have sinus difficulty with very dry nasal passages that were itchy at night, also dry eyes in the morning which eye drops helped. I am 80 (with a lovely family like you) so I expect things to go a bit cronky but I was very disappointed to find my knees got a lot worse on Avastin. I finished Avastin 3 weeks ago and am noticing that I can turn over in bed without slow and careful leg rearrangements. I do hope this is for real ! Best of luck to you. Come on here and have a melt down any time. We've all done it. Liz

  • Thank you for your reply and thoughts on avastin. Will keep in touch

  • Hi there

    Like me I am sure you never heard of Primary Peritoneal Cancer until you were told you had it. I had heard of OC and of course because we have similar symptoms and treatment we are grouped together with OC patients . It is very rare and to give you an example , in Ireland about 800 women a year are diagnosed with OC but only about 12 women are diagnosed with PPC. I am not sure what the statistics are in the UK. As you describe the roller coaster of emotions can be unbearable sometimes especially when nobody heard of your disease before. That is why it is so wonderful to be part of this site as we are embraced by fellow sisters as one of their own. You will also find a number of PPC patients on this site so we are not alone. I was diagnosed with Stage 3 PPC in 2011. Thank God since I finished treatment at the end of that year I have not had a recurrence. As I had some niggling symptoms recently I had a CT scan last week and now waiting for results . I am hoping that it's just my old age taking over as I am 71 this year ! I joined a support group and do meditation ,tai chi reflexology etc. I find them very good to focus my mind and live in the present. I am sure your lovely children and grandchildren will help you to think happy thoughts. If I can be of any help let me know

    XXX

  • Thanks for your reply. As you say a very rare cancer. I'm just trying to be as active and positive as possible

  • Hi

    I too have PPC stage IV diagnosed in July 13. Chemo, surgery and then more chemo. No avastin or anything for that matter and so far no recurrence although blood levels up last month and appointment with oncologist in 2 months rather than 3. This is a scary illness which creeps up on you but there are lots of survivors on this site and lots of lovely support and help and I am sure you will find all encouraging.

    Good luck

    Mopsie xx

  • Thanks for your reply. Keeping as positive as I can

  • I have/had PPC! Diagnosed Nov 2014, found lump below right rib. Surgery in December 2014 to remove lump. More surgery in Feb 2014 as small tumour on Omentum was missed in the first op. Chemo April to July. Celebrating 2 years cancer free. Most of the time I feel very positive and there are days when I dont even think about it. On the other hand there are moments when it all comes back and I wonder if I am being naive in thinking that I might be one of the ones who survive. And then I spend the day with my husband and two grandchildren and I am back on track and living life to the full. So, I guess we all live a life of ups and downs and I just hope for us all that the ups keep outweighing the downs. Xx

  • I can't believe how naive I was back in October'15. I had no symptoms other than what I believed were menopausal (hot flushes mainly). Suddenly I had trouble breathing and my GP was convinced that at 55, I had suddenly developed asthma. Anyway long story short, I suffered a partially collapsed lung and had a drain put in. Tests on the fluid revealed a high CA125 of 2065. I remember asking the lung specialist if I 'could pop back next week and have my ovaries out' - is how thick I was!. Anyway further tests and a referral to a specialist hospital revealed PPC or a 'scattering of hundreds and thousands' according to my oncologist. I'm up to chemo 4 next week after a blood transfusion on Monday. Then surgery in three or four weeks. I don't know what I would have done without this forum. Welcome to you. xx

  • Thank you. The awful thing about this disease is no warning whatsoever. The day before my diagnosis I'd had lunch out and walked 10 miles !

  • Good luck with your treatment and keep in touch !

  • Sorry to hear of your diagnosis - it's devastating when something has been going on in the background we didn't know about and suddenly you hear it's a stage 4 cancer. I was diagnosed with ovarian cancer 3c or possibly PPC (they can't say what came first) in October after a spell of bowel symptoms and a stomach swollen by ascites. Yesterday I completed 6 cycles of taxol/carboplatin, with added Avastin for the final 3. I will continue on Avastin for a year, they say. After 5 chemo treatments my CA125 has gone down to 105 - it began at the astonomical figure of 10,500 so well done that treatment. I haven't felt too bad on it - a few tired days when I come off the steroids, then I pick up. I do a lot of walking and talking with friends and live a gentler life which I appreciate more than I did before. Yes, I have my downs as I wonder where it's all going and I was told after 3 chemos my cancer was too diffuse to make surgery safe - there was a risk to the bowel. I am being scanned again on Monday so am nervous about that, but I know I'll pick myself up again.

    I hope all goes well - enjoy the good moments and, as they say, stay strong!

  • Hi. I have PPC it was stage 4 at diagnosis. That was back in 2014. If you have a look at my profile I have my history on there.

    There are other women on here that are going strong. They are an inspiration.

    It can be tough going at times but there is always support on here xo

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