Ca125 rising on caelyx

Hi everyone I'm a bit down hearted today my Mam has stage 3b ovarian cancer and 8 weeks ago we were told there's nothing more the hospital can do other than put her on palliative chemo being caelyx to try stop it from spreading and get her ca125 down it was 251 starting a month ago she has had 1 chemo of 6 with awful side effects when she was in on Friday they took bloods to check her ca125 and today we were told it's gone up to 348 I'm all over the place is that a huge amount to rise in 28days on treatment any advice much appreciated

21 Replies

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  • Hi Trayd2,

    Can't offer advice, but there are so many ladies on this site with so much advice to give.

    All our stories are varied,but there are a lot that have been pulled back from the brink,so I don't want you to think all hope is lost.There is also telephone advice on this site from specialist nurses so please call.

    You can always get a second opinion, but more than anything,stay strong and I hope you get more advice than me

    Wishing you all the best

    Carole xxx

  • Thank you so much even your reply has given me abut of hope I'm just lost in all of this we've been fighting this horrible disease 3 years now

  • HI Trayd2, It is very early days yet as regards getting a definite result on Caelyx, Your Mums needs to have at least two more before the trends can be judged. Sometimes on some chemos, the 125 goes up before it comes down. Hopefully that is your Mums case. I believe some side effects can be a bit harsh, But hang in there all is not lost yet. I trust the team will help your Mum to overcome the side effects, ie cream for sore hands and feet and nausea etc. Thinking of you

  • Thank you so much for your reply this has just never happened before but she's always begin on a curative form of treatment my Mam has 6 booked in but she said today she might only do 1 more and stop she feels it's not worth feeling so crap we have lost all faith in her team they sent her home last month on no steroids even though she questioned it she was so low then on Friday they tell her she needs to be on them I really believe she's just a number on palliative treatment so just whatever

  • I understand that the first time you get a course of chemo it is termed as curative. The second course of chemo and beyond is referred to as palliative. I completed my second course in August. It was referred to as palliative. Don't let that sword frighten oir upset her, it is just medical terminology. Ann x

  • to my understanding chemos are never palliative, because the side effects are often so harsh and make the patients feel sick and miserable. Palliative care steps into the arena, when all attempts to cure or stabilize the disease with curative means have been exhausted or when the patient cannot anymore take any chemos because of the severe side effects. Palliative means relieving the patient’s pains and making rest of her life as comfortable as possible. Palliative care belongs to the terminal phase, but even palliative care may last several years

  • If you feel your Mum isnt getting the right attention, then look for a second opinion. I know they can be busy but at the same time they have a duty of care to all patients. If you have an alternative hospital nearby then go and get a second opinion.

  • Hi Trayd, I agree with Suzuki you can ask for a second opinion. One thing you must be aware of is doctors tend to look at the worse scenario, what if. Taken that in account it doesn't hurt to ask more questions or find out where your nearest cancer hospital is. The fact your mum doesn't have faith in her team shows there is a problem here.

    I was told I had to take steroids after chemo otherwise I will feel ill. So not giving them to your mum was wrong. Take care Cindyxx

  • Firstly I send prayers and a big hug across the ether to you and your mum. Secondly I also recommend getting a second opinion, there still is lots to do and try and whilst I know that seems hard to do it starts with a phone call. Not sure where your mum is being treated but you can ring the freephone nurse line (number given on the front page of the main OvaCome site) to speak with one of the wonderful nurses too.

    There are many ladies here -and on other sites who are at the same stage as your mum who are managing well, so there is hope and life.

    Chemo of all sorts makes some of us feel dreadful, it's hard to explain how poorly we can be at that time however your mum was not helped at all by the poor treatment she had with the steroids. In my opinion it's time for a loud complaint and a bit of action BUT that's what I'd do and it isn't necessarily what your mum would do! I went to each of my chemos with a list of exactly what tablets I expected to be sent home with, plus any I had run out of, and I worked through that list with a chemo nurse ticking them off as they were given to me and asking again when they weren't brought over to me! It worked !!!

    Take care

    Clare

    Xx

  • Hello,

    My CA 125 went up after chemo 1 and 2 then started to move down. My consultant said that this can happen. It has continued to go down since then.

    Take care,

    Lisa x

  • Hi Trayd2.

    Like your mum I have stage 3 ovarian cancer for the last 3 years. ( I'm 71 years young)

    after 2 years treatment of carboplatin with 2 recurrence and some bad side effects.

    I'm now platinium resistant so my team has me on caelyx I'm also having 6, one every 4 weeks,

    yes the side effect are not good a rush over my body plus blisters under my arms .

    but it can be manage,

    I moisturize 2 to 3 times a day and used a steroid cream called cortic helped with the rash.

    Now my team gave me steroids before chemo this help clear up the rush and blisters,

    I still have some side effects but not too bad .

    I've had 4 so far it came down after the first one now it's gone up I've been told this is quite common with caelyx so please have heart.

    I did ask my team at the start if caelyx was a maintenance chemo or hopefully put me into remission I was told hopefully remission,

    Please if your mum is not happy with this hospital get a second opinion.

    If she can give caelyx a go ask about the steroids before the chemo it really help with the side effects

    all my best to you and your mum

    Lorraine xx

  • Hi Trayd2,

    My mum has stage 3c and has been fighting for the last 4.5 years. From my experience it is best not to panic over the CA125 rising. Usually when mum has had chemo and they measure the CA125 after two chemos and not the first one. This may be because it takes two to get the CA125 to lower. This is a number I (and the family) have been obsessed with over the last few years. I always found it beneficial to hear of people with higher CA125's than mum who have had successful treatment. Now it's mum turn to be that example. In August she had a build up of fluid in her abdomen and her CA125 at that time was over 3300. After 2 chemos (and the draining of the fluid) the results last week were 151. To be honest I'm amazed.

    If you are not happy though push for a second opinion.

    Hope this helps.

  • I understand completely what your saying I'm an only child so I'm kind of in charge and feel very protective of my Mam she's only 58 and tired of fighting the nurses just don't seem to care she asked after the first chemo do I not need steroids as we knew she did from previous chemos and she was told no you got them in your drip also she's had to have a line put in her chest as her veins have callapsed one nurse told her they will take it out after this 6 month course and then another told her oh no your on palliative treatment that's in for how ever long you have left

  • Hello, sorry for my poor english, I'm French and I write from France.

    I've an ovarian cancer, it's the second time. This time, i've Calyx and Carboplatin. We've begun 3 weeks ago and the CA went down from 104 to 87. But I was worried so I've seen an another doctor for an another advice in the case of Calyx doesn't work. He thinks it's possible to have Taxol with Avastin (bevacizumab). Maybe is it possible also in your country, I don't know ? I wish you the best. Keep quiet.

  • As others have suggested it may be time to get a second opinion but it may be that the chemo doesn't show effects on the CA-125 after just one cycle All the best for you and your mother!

  • I had three doses of Carboplatin and the side effects won, so I dropped out. There is some research currently being cited that shows an equal response to three as six. Some hospitals were trialing this. Although it's easy to get hung up on the numbers, I'm very guilty of that, it can be inflammation in the abdomen caused by chemo irritation.

    Don't be down hearted, it's not straight road but a bumpy lane and there will be ups and downs. I met a lady in Tenerife who was told in 1978 they could do no more for her, offered no chemo and said enjoy the next few weeks, so they cashed in all their savings and went round the world, she is still here, but they were broke for a few years lol

    LA

  • Hi. My CA 125 went up at first on caelyx, but down after the second. That happens on this treatment apparently.

  • When I started my first course of chemo (carboplatin) 3 years ago, I was asked to sign a form to say I understood it was palliative not curative. Next week I am due to start my third course of chemo, & today I was asked to sign a form to say I understood it would be palliative & life extending, which I thought sounded less harsh. I still feel reasonably well. So palliative does not always mean immediately life threatening. Regarding steroids, with both my previous chemos, I was only given steroids just before infusions started, none to take home, & I was not aware of that being any problem. In fact, my dose was reduced in the middle of my last course on the grounds that I wasn't having any trouble with sickness, & the reduced dose would be better for my diabetic control. Di

  • Hello Trayd2. My mum was diagnosed Stage 3c in Dec 2013. Had all the debulking/carbo/taxol, etc in 2014. Jan 2015 horrible news of recurrence. So, mum had 6 Caelyx. After the third the peeling hands became so sore her chemo was reduced by 20% then all was well so look out for these symptoms which don't happen to everyone. Her CA125 fluctuated but after the 6th and final Caelyx on 21 July 2015 she went onto three mostly 'watch and wait'. Her CA125 carried on reducing well after the 6th Caelyx! I went with her to her oncology appointment on Tuesday this week and she has been booked in for a scan as her CA125 had risen from 174 to 216 but she is classed as 'stable'. She knows she's got to live with it and we'll have to see what the CT throws up. She has a few little tumours here and there but is willing to have more treatment if needed. She celebrated her 80th birthday on 4 October - a birthday I didn't think I'd see! So, tell your mum not to give up. A few ladies on this site have compared living with OC as a chronic illness and I mentioned this to mum and she pondered and agreed. She has a pretty good quality of life and I actually forget she has cancer! Anyway, sending best wishes. Jane X

  • Thanks Jane for replying my mams scan is on 1st of Dec so we will see what that shows too she is in a really bad way today with burning feet I wish I could do more for her

  • Hi Trayd2. Yes, my mum had burning feet, peeling hands and other sores and, as I said, the Caelyx was reduced by 20%. Mum's CA125 also fluctuated and was over 300 at one point. Try to keep positive. It's such a roller coaster ride isn't it. Thinking about you and I hope your mum's treatment will go on to work out OK. Palliative is such a scary word and I dreaded hearing it but I just try to keep positive and see mum as much as possible and we have a great time when we're together. She's over 200 miles away so it's difficult. Best wishes. Jane X

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