Hi ladies any one of you been on carboplatin and caelyx for 1st reacurrance ? I was on carboplatin, taxol, avastin for 1st line treatment my last avastin was in Dec 2016. All was clear on scan in April 2016 but it’s now back in various places including liver.
I’m stage 3/c and ca125 is now 118 was 25 in February. I’m seeing my new consultant on Monday tests on Tuesday ,starting chemo Wednesday. They have decided that this combination of drug is the best way forward for me, I asked about more surgery but was told they only operate again if the tumours are in one place, do any of you know if that’s a fact? Any advice on what questions to ask him on Monday, as mind went a bit blank Last week when went for scan results.
Maggie
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Obviously i dont know your personal situation but i can tell you about my recent journey with second surgery.
I had 4 years clear then recurrence on large bowel in Nov 2017. My consultant (who knows i read all the latest evidence 😬) discussed second surgery in light of the recent evidence. They had not done any second surgeries at my centre as it was so new. Although she did find a surgeon willing to do it i opted to go to London and see one of the leaders in this field who did my op in Jan.
she told me i was a good candidate as the tumour appeared resectable. But she also told me you almost never find just one and she searched the whole abdomen for others.
I think the criteria is removability rather than number/size, and the results show those with complete resection have the most to gain, and as its early days those figures havnt yet converted into people living longer yet.
Having said that i think there is often great resistance to second surgery in some areas and i am very happy i took that route.
Thanks for the link, yes it does seem that they just want to give more chemotherapy, I will ask my new consultant on Monday about surgery although he will probably want me to just get on with treatment ASAP.
Hope that your doing well.
Thanks again Maggie
I've been told that they won't operate here in Australia for multi site recurrence because if they can see a couple of sites on the scans then there are probably others too small to see on scan. I had carbo only for my first recurrence - it worked better than expected and I've been completely medicine free for 8 months now. Good luck, Dawn
I’m sorry about your recurrence. I am almost exactly the same as you, just a little further down the road. I had two years remission which included Avastin. (I was also on the Trioc TroVax Trial for a few months in the Autumn which didn’t work for me, a vaccine) I started Carbo/Caelyx in March. My CA125 had gone up very slowly to 342 and I had scattered disease including on the dome of my liver. My oncologist said it wasn’t an option to operate as it was too small, like thickening of the bowel loops and peritoneum. The first treatment was awful afterwards as I think I went into it rather ill with sickness and bowel trouble I was unwell for 8 days and was reluctant to have the second treatment. However the second treatment went fine and they gave me an excellent anti sickness drug for three days called Emend. I was delighted when I had my last blood test that my CA125 is down to 53 after two lots. My third treatment has been postponed by a week due to low White blood cells though, so although it is doing it’s job it is hard on the body. I googled boosting white bloods and it said eat broccoli, red peppers, almonds, citrus fruit and garlic, so lots of vitamin C, I guess. The only other thing is constipation as usual, and dry skin, especially on your hands (minimise washing up, ironing and hot baths I was told by my oncologist) but I seem to be fine with them and use loads of moisturising cream). I do hope it all goes well for you whether or not you have surgery. Sophia x
Hi Sophia thanks for all the information, I’ve been told that the drugs can cause you to feel very hot and not to go out in the sun,🌞 ( as if we have much ) also only Luke warm showers because of skin rashes and blisters? Have you been told that your hair will only thin and not fall out, I’ve been hoping to keep my hair this time. Do you have your treatment every four weeks, which is what they have planned for me.
Hope that you’re keeping as well as possible and ca125 carries on decreasing. Maggie x
I’ve had three surgeries. The first was cyst, ovary and tube. Second was precautionary hysterectomy. Three years later I had surgery in line with the desktop 3 trial. Tumour in pelvis, resection of bowel.
Surgery would still be available if it had been isolated this time but the tumour has taken a blood supply from my pelvis and broken through into the bladder and cervical area which means it’s too extensive
Surgery is always a better choice if available
I would ask Christina Fotopoulou for a second opinion as she believes in radical surgery. If she won’t do it nobody will
Hi Lily-Anne thanks for reply I will definitely ask consultant tomorrow about surgery again, I think that mentally I’d feel better if it’s possible to have more surgery. I hope that you’re doing as well as possible, you’re often in my thoughts such a brave strong woman. Maggie xx
Hi, diagnosed stage 3c March 2016 after 3 months of investigation. Carbo/taxol with surgery in the middle. 20 Aviston to follow.NED September 2016
January 2018 ca125 went up from 19 to 26. Confirmed reoccurance last week. Scan showed two toumers in abdomen. Having keyhole to see if there are any more. If only two they will cut again and remove, followed by chemo again. Don't know which combination yet.
I am lucky to have private health care through my hubbys job.
Hi Maggie, I did not have Carbo/Caelyx for 1st recurrence but did have single Caelyx for 3 line treatment with good results, the side effects were hard but manageable did the whole 6 treatments one dose every 4 weeks.
My history is as soon as I go off chemo my 125 goes up, I had Carebo/Caelyx as 5th treatment had a break to try a trial drug, now about to go back on Caebo/ Caelyx as 6th treatment this Thursday as my 125 is now 240. I find this combo to be the right on for me as you know we are also different when it comes to treatments I hope it gives you good results.
When I had the treatment I was given steroids and then 3 tablets to take each morning for the next 3 days ,use plenty of moisturizer for dry skin and I also had a problem with constipation most chemo do this. Carbo/Caelyx was a lot easier then other treatments I've been on even better then single Caelyx.
I did have a second opinion bout surgery and was told I would not be suitable as it was not just a tumor I had spot in the area some as small as 5mm.
All the best for Monday, I write down question to ask my oncologist I think she expects I'll have a list now..Take care Lorraine xx
Hi Lorraine thank so much for information, yes it seems as though more surgery is not a option for most of us. Did they give you a special moisturiser for your skin , and have you kept your hair on carbo/caelyx ? Yes a list for Monday is a great idea 😊. It must be very hard for you to be on almost constant treatments to keep everything as stable as possible, wishing you all the best. Maggie xx
Hi Maggie, I did not loose my hair though some ladies say it does thine a bit, as for the moisturizer any good one will do I used Aveeno and also stopped using soap i use a body wash Aveeno has one in it range.
I found it helpful to go to the chemist for advice plus the ladies on here can also help you.
One thing you need to watch is constipation this can course a blockage.
I ended up in hospital with this, I take Coloxyl ,softener and Laxative and Molaxoce, and a nice big glass of prune juice.
If you type how to fix constipation in the Search My Ovacome at the top of the your computer then enter you will find previous post from the ladies on how to fix it.
Take care Lorraine xx ... Ps always talk any advice over with your team
I had carbo caelyx for reacurance back last summer and also the passaro trials which was every 3 weeks 4 days in a row and on the 4th day had the carbo/caelyx added. Unfortunately it did not work for me I am now going to start 3rd line treatment of taxol on its own. I did have a complete response but not for very long. Many ladies do very well though on this combination so please do not be disheartened by my outcome. I start my 3rd line on 14th. Good luck 👍
I had carbo/caelyx at a similar time as you and found it very do-able. No hair loss but watch out for constipation and very dry hands and feet that still give me grief even though it is now almost six months after finishing. It’s easier than carbo/taxol for most people but low white cell counts and magnesium were a hiccup. Ask your CNS for advice re the above before any side effects strike but hopefully it will be good for you. I went on holiday to Majorca mid way through and didn’t have problems with the heat, just kept out of the mid day sun in case of burning. Now on watch and wait for as long as possible but with bits in my lung liver and abdomen I will no doubt be back on the chemo route in the not too distant future, just enjoying life while the going is good!
Hoping it all goes well for you and sending love and hugs x
Hope that you have a nice long time before you need any more treatment, that must have been great that you could go on holiday, expect you were able to recharge your batteries. 🌞 One thing I’m happy about is no hair loss this time hopefully 👶🏻, as I’m hoping to keep treatment secret from younger grandchildren.
Hi there I have just finished 6 months of carbo / Caelyx and sadly didn’t work for me.. I think had surgery been an option it may have been better but there are multiple nodules around so they wouldn’t operate. As for coping on this chemo I would highly recommend anti sickness tablets ‘emend’ too - they are very expensive but work well ( I had endless vomiting after first session but once I had emend I wasn’t sick again - just nauseous)
I moisturized well and my skin was fine. I had chest pressure that I was testsed for but everything was ok. Preempt vonstipation! Lots of prunes and prune juice!!
Good luck it is so different for everyone and have heard lots of success stories with this protocol.
Yes I’ve just completed 6 months of that for my 1st reoccurrence. Unfortunately for me my tumours have become platinum resistant and the whole treatment failed and the cancer is active again. I’m now on weekly taxol. Hoping for better results. It’s part of the journey unfortunately and until we try we don’t know what will work for us. I appreciate the place you are in and may I wish you luck with that regime. All the best Kerry
Thank you 😊Hope that the taxol does it’s job for you, I was on weekly for first line ( icon 8B ) trial found all the visits very tiring, life revolves around hospital treatments. Take care mx
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