My mum was diagnosed with primary peritoneal cancer (high grade serous tumour, stage 3c) in spring 2015 and finished treatment (carbo/taxol) at the end of last year. We've had a lovely period of respite since, but she now has a nodule of disease in her pleural cavity (I think that's the term - not quite in her lung but pressing on it) and so they're going to start on chemo again - carboplatin/caelyx this time - in about a week. Of course we're disappointed and anxious, especially as we were hoping Mum and Dad would be able to come and stay with us in Berlin for Christmas, but I suppose it's better to be practical now. So, to that end, I was wondering if anybody who's of a similar (ish) age could share their experiences of this treatment - side effects, efficacy, how much time after treatment spent disease-free, or at least with no disease progression.
I know everybody reacts differently to these drugs but I'd just like to prepare myself and my family for what to expect! The unknown is so much harder to deal with, it's so much more reassuring to hear from people who have come out the other side.
Thanks, and best wishes to everyone fighting this crappy disease,
Sara xx
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Hi Sara, I have had no experience of caelyx, but some of the ladies on this side have had various side effects and others very little. I imagine your Mum will be tired,a little constipated from the Carbo, The Caelyx causes tiredness as well and fatigue. It is hard that your plans for Xmas are changed but could your Mum ask and see if they would delay treatment until January? Maybe she doesnt want to do this. As regards recurrence, I started off on this road in 2006 I have had a few recurrences and I am still here, stable at last scan. So really this illness can be managed nowadays the same as any other chronic illness.
Thanks Suzuki, you're very kind. I try to think of it as a chronic illness but sometimes you can't help wondering what the future holds. I'm pregnant with my second child - a little boy - who is due in April and I'm just so desperate for Mum to meet him. However it's also a good time to be grateful that we're all together now
Mum won't want to delay treatment as she has bad thoracic pain and coughing, so I think the chemo will hopefully relieve the physical discomfort, which will make things much easier. But it's just so good to hear from someone who is still battling on after 10 years! It's very comforting. Thank you again xxxx
Ah congrats on your expected arrival and I hope all goes well for you both, I would agree that the chemo will relieve the pain for your Mum. It is a difficult time for you so take care and mind yourself
Hello Sara My mum was 80 in Oct. She was diagnosed on Christmas Eve 2013 - same grade as your mum. Had all the debulking, carbo/taxol in 2014. Oct 2014 things seemed great. Jan 2015 recurrence. Then 6 Caelyx and mum had peeling hands and Caelyx 20% reduced and things OK. Her last Caelyx was in July 2015 and she's been on 'watch and wait'. Her CA125 has started to rise again. She has a scan on 2 Dec and Onc appt on 6 December so we'll see what happens next. But her quality of life is good and she feels OK. I can't believe she's still battling on and am amazed. Best of luck to you and stay positive. Sending a virtual hug. Jane X
Thank you Jane. Your mum's situation sounds very similar to mine! So it's very good to hear that things are going reasonably okay and that Caelyx wasn't too awful. We have to be grateful for whatever time we have don't we! I'll be thinking of you and your mum in December and keeping my fingers crossed that all is well. All the best, Sara xxx
Thanks Sara. I'm keeping my fingers crossed too that things are still stable. Caelyx wasn't too bad. After third one mum had really sore hands which started to peel but she had the Caelyx reduced by 20% and things were OK after that and she was able to finish the course. Of course your mum is having the Caelyx/Carbo combination so the side effects might be different with that. Yes, we do have to be grateful for time and I didn't think I'd be celebrating mum's 80th after the diagnosis in 2013. I really appreciate the time I have with mum now. I'm over 200 miles away from her so it's not easy but I drive down as often as I can. Best wishes and a big hug and hope things go OK for your mum. Jane XX
Hello Sara - I've just started on 6 X carbo/caelyx after 2 1/2 years remission. I am 56 years old and on 1st recurrence. I feel well but my energy levels are totally depleted, and I have to fight hard not to focus on imaginary pains. Because Caelyx tends to be given every 4 weeks you might find that your mum can travel towards the end of the 1st round? I feel considerably more like myself now, just 2 weeks after my 1st session, and am considering some social occasions etc for Christmas as my treatments fall at the right time. My next session is planned for the 1st week in January, so it'll be downhill from then. Your mum's age might well make you feel that this is impossible of course, and I understand that. She is fortunate that you are thinking ahead for her.
Wishing you and your family a lovely Christmas. Berlin's a wonderful city! x
Oh this is encouraging! I'll find out what the treatment schedule might be! I hope you have a wonderful Christmas and that the rest of the treatment is not too taxing - and thank you for your reply x
I was diagnosed with stage 3c high grade serous PPC in 2011 and responded very well to carbo/taxol . I am in the same age group as your mother but my story then changes as I have recurrence in my lymph nodes this year. I will finish my Carbo only chemo on 5dec and wont have my scan until after Christmas . I think that PPC can also affect the lungs as i had a breathing problem a year before diagnosis . It did clear with antibiotics but I have since thought it was a sign of the disease .
I have no experience of Caelyx but CarboplAtin has not been too bad apart from constipation which can be managed.
It is such bad timing that your Christmas plans will have to change but for me Christmas is in our hearts and wherever our family is at the time. It is best to follow the medical advice and it seems they are on the ball in tackling this quickly. I wish your Mum success in this new treatement and that the side effects are very little.
Yes you're right. We're going to make it lovely and cosy and magical, no matter what! And we are very lucky with the medical care she has received, it has been phenomenal - effective, compassionate and professional. Wishing you all the best too and I hope that your treatment goes very well xx
Hi Sarah, I am the same age as your mum and found out last year that I had ppc stage four
I started chemo and had three lots of carboplatin /taxol then debulking op and layer three more of chemo. Also started avastin with last two lots of chemo.plan was to then have avastin on it's own every three weeks part way through had to stop as ca125 was rising. Was then put on caylax having it every four weeks, was feeling OK on it not feeling sick but did come out in a rash
Started that in may but then after my fourth one in August but had to come off it as my ca125 was rising again. so was then put on weekly taxol, so far my numbers are down and will finish this on the 16th of December. I really hope the caylax will work for your mum I made sure I had my sickness tablets in and also mouth washes and caregel which I was prescribed from the hospital, I did get mouth ulcers while on caylax but if your mum is prepared like you want her to be she should be OK. oh and my hair grew back ☺but have now lost it all again 😞. sorry for it being such a long answer. But hope it helps. love Julie xxx
Thanks Juliette, it's very helpful - certainly good to know that Caelyx doesn't always cause sickness. I'm sorry to hear it didn't work that well for you but glad the taxol is doing its job. There seem to be so many lines of treatment these days... Bless modern medicine. I hope that you have a long period of respite after December and a merry Christmas xx
like your mum I have Stage 3c I was diagnosed 2 1/2years ago.I have have had a couple of recurrence in that time.For the last 6 months I've been on caelyx just finished my last one,Yes the side effects can be hard but I've manage the full 6 rounds.
the first month no side effects at all Great, the second a bad rush all over my body and blisters under my arms and any where the body has heat.
So just before my 3rd treatment my oncologist gave me steroids cleared the rush and blister.I have a port so before each caelyx I now have steroids.The last 2 treatments my toe nails have started to fall off and my hands are red and a bit
tender just keep cool and use a moisturizer as much as possible.I know this all sound awful but I have managed the whole 6 rounds, my energy level has been good and I've managed to go to my casual job.
Caelyx can be hard on the heart next week I'm going in to have a heart test if all is well will have I might have 2 more caelyx.
I'm sure you have read on this site we all react differently to chemo, I know of a lady on this site who has had cardo/caelyx and has been in remission now for 18 months.
I hope this has help and put your mind at rest a little. Merry Christmas to you and your Mum from down under
Thank you so much Lorraine. This does help a lot. It's good to know that the general experience seems to be that Caelyx isn't truly awful (if still unpleasant), and it's very useful to have some idea of what to expect.
18 months would be amazing! But I'll take anything these days Although this disease has been hard on us all I think it has given our whole family a new appreciation for the present and for each other. So that's something I suppose.
Best wishes for you, I hope your heart is in good health and that you have a lovely Christmas down in Oz
Hi, I was 71 when I had carbo/Caylex last year and it was my 3rd line. Unfortunately it did not work for me, ca started rising after 4 cycles but I had the 6 before going onto 18 sessions of taxol, which only worked abit. I have high grade serous.
Side effects, very hot, constipation, sore mouth and sores up the nose but manageable.
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Although this disease has been hard on us all I think it has given our whole family a new appreciation for the present and for each other. So that's something I suppose.
Carboplatin/Caelyx for first reoccurrence - any experiences to share please? 
A big thank you
Great Response
Advice on next steps
Avastin no longer working, next steps?
