first recurrence - experiences?

hello all,

Mum (69 years old) was diagnosed with a stage 3c or b high grade serous carcinoma on her peritoneum (Primary peritoneal cancer or PPC) about this time last year. She had 9 cycles of weekly Taxol/carboplatin chemo, then a very long debulking operation in November, then 7 more cycles of chemo, finishing in February. After this her CA125 was right down and scans came back clear.

She went for her first CT scan last week, and we got the results today - it's back. I sort of expected this, and I know that this means she will probably have to have Caelyx, Taxol or gemcitabine.

I guess I'm just on here because I want to hear that it's not unusual for recurrence to be so fast, and I also want to know how effective the second line of treatment can be. If you have any (hopefully positive!) stories to share about your first recurrence then I would love to hear them.

Also, Mum eats a vast amount of cheese. I've heard that it's potentially not great for ovarian cancer / PPC and I'd love for her to cut down - thoughts? I have read that the oestrogen levels in cheese might have links to ovarian cancer and it bothers me that this is something that could help which we are not doing.

Anyway I hope that someone can come along and hold my hand a bit - feel like I really need it! 😊

15 Replies

  • So sorry to hear this horrible disease has returned so soon for your mum. I'm on my first round of chemo so am not really aware of the other treatments yet, but just wanted to say I will hold your hand.

    Sending big hugs

    Mandy, xx

  • Thank you Mandy. That means a lot at this lonely time. I hope you're feeling okay too and that chemo isn't too taxing xxxx

  • Hi microferret, I am not a doctor but I have got good results from Gemzar, there is no hair loss just one day a bit off nausea can be controlled. Its basically what the consultant decides for your Mum really. I would also see if Avastin is available for her with the chemo as it does help you stay in remission a bit longer. I am of course sorry your Mum got a recurrence so fast and the other side of it is that is had been picked up and can be dealt with. It is hard on you and of course on your Mum to have to think about treatment so soon, I dont actually eat a lot of cheese to be honest people say a dairy free diet but you know something everything in moderation is fine too,

  • thanks suzuki. I'll definitely ask about Avastin! Lots of people have mentioned it so hopefully it is available and can help. I agree that moderation is key with diet - Mum eats great slabs of cheese, they are really her only unhealthy indulgence (apart from double chocolate Magnums) and so I don't want to take away something she enjoy but I do think it's sensible to cut down at least a bit. Thanks for your response. People are so helpful and kind on here and it is so appreciated. x

  • I was stage 3c too, BRCA1, & my 6month check after massive surgery in July 2015 & chemo, is Tuesday. I feel fine & fit, but am of course worried a lot of the time.

    Cut out white carbs & sugar completely-not as hard as u think. Cheese? I don't know but I was always slim & am now slimmer so I enjoy butter & dairy. I am advised by Care Oncology Clinic in London, plus Penny Brohn in Bristol. If she is well enough to be pro-active (& if my results are good next Tuesday) it will not be difficult for me to truly believe they have all helped.

  • Thank you Sherrym, I will definitely suggest cutting out the white carbs and sugar. Mum eats barely any sugar already so hopefully that won't be too hard to eliminate... I will have my fingers crossed for you on Tuesday too! x

  • Hi, I had surgery on 12 June 13 for what turned out to be stage 3b high grade serous ovarian cancer. I completed carbo/taxol December 13. Mine came back in August 14. It was a shock. The good news however was that it was caught early and I was able to go on watch and wait. I lived with it until recommencing chemo in February 16. I had scan after 2 cycles of same chemo again and the results were good. Have just completed chemo 4 on Monday due to problems once again with my white blood cell count fallung. I am hopefully for a good result. Hopefully your mum will get one too. Ann xx

  • Thank you Ann! This is very reassuring. It's nice to hear that a small progression is not necessarily a disaster! Apparently (and I didn't know this before) there was still a tiny bit of residual disease left at the completion of chemo in Feb, so some progression doesn't mean that it appeared from nowhere. At hearing this, and getting these responses, I am starting to feel more positive and less anxious. x

  • I am stage 3 OC as well, and have read about the possible link between OC and high dairy intake.

    Being a vegetarian, I used to eat a lot of dairy, yogurt and fruit for breakfast every day, and HUGE amounts of cheese, which I love.

    Also, working in care I consumed copious amounts of tea, (possibly 12 mugs a day!)

    I don't know if dairy is implicated in my cancer, but I have made the decision to cut it out of my diet, as it is easily done and I have nothing to lose,

  • I think that's sensible! The thing that really sways me is seeing how low rates of breast and ovarian cancer are in Japan - although in the past decades they have been rising, and this does seem to coincide with the slow introduction of Western foods like cheese, butter and ice cream. I think it's just worth a try cutting out dairy to see if it helps. I hope it helps you, and thanks a lot for the response :)

  • Hi - what a swine of a disease this is! It affect the whole family doesn't it? Your mum is lucky to have a kind and sensitive daughter (forgive me if you are a son!).

    There are plenty of people on here who have had a recurrence so quickly. I am the same stage and personally was lucky to have a 2 and a half year gap but after gemcarbo and avastin am doing well again. My hospital buddy has never really been free of it but us still here after many treatments and five years.

    Try to get used to living one day at a time in terms of your mum's cancer as worrying about the future spoils a perfectly good today. It's helped me so much to shrink the future 'what ifs' and concentrate on what is happening now.

    Take care; wishing your mum back to health.

    Sandra x

  • Thank you Sandra, and you are correct, I am a daughter :) I live in Germany at the moment, and my mum, brother and father are all in the UK - so a lot of the time I feel a bit disconnected from things, even though I Skype my parents twice a day since Mum got ill. You're so right about living in the moment. Whenever I start obsessing and worrying I try to take a deep breath and tell myself "be here, now". It doesn't always work, especially at 3am, but I'm improving!

    It's very reassuring to hear about people living with this disease and having several good years in between treatments. I hope that when the time comes for Mum to have gem/carbo and (hopefully) Avastin, it will work for her, and I'm glad you're doing well - long may it continue!

    Sara xx

  • Hi MF

    I was diagnosed 4 1/2 years ago with 3C. Two debulking ops and 6 months of chemo on Carbo/Taxol. When I went into remission, my onc told me there was a 50% chance it would be back within 2 years. It was back in 18 months. I was then onto Carbo/Caelyx plus Avastin for 6 months and have been continuing Avastin (trial drug) for a further year. Avastin has given me a longer remission, I believe, than I would have had otherwise. Also it doesn't knock you about like 'real' chemo drugs & has few side effects. My onc's prognosis is now "how long's a piece of string" - he's great on technical terms.

    I haven't heard that about cheese. My onc says to eat whatever you want, but I have to admit, I see that as a bit of a cop-out - still, his job is chemo not nutrition. The only thing I've read that's been linked to OC is red wine - bummer, isn't it ??!!

    Lovely to read your concern for your Mum - she'll be appreciative of that. Pauline.

  • Hello, I was diagnosed with PPC IIIC in May 2014. Had 9 carbo/plat till Jan 2015 then Avastin till July. It was back by Sept. I had 3 Caelyx which treated the existing disease but not the new growth so was put onto carbo/gem/Avastin. I had my 6th and final chemo yesterday and my CA125 is down to 5 with a clear scan. I'll continue on the Avastin - not sure how long.

    So a similar pattern to your Mum who must be feeling devastated at the prospect of going through it again so soon, but at the end of 10 months 2nd line I'm NED again and de-mob happy. Like the first time, you just get on with it and deal with it's little 'gifts' as you go. My hair thinned on the Caelyx but didn't completely fall out and I kept my eyebrows/lashes. It even started growing again on the carbo/gem. Overall, I didn't find the side effects to be as bad as first line.

    I wish you and your Mum all the very best and hope this second round isn't as gruelling and she too will have it all behind her again in a few months.

    Jane X

  • Sorry meant carbo/taxol for first line x

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