Hi All. I typed out a long message last night and I don't think it sent and I think it was because I inserted a photo that may have been too large. I always seem to have problems inserting photos which is why my profile picture is a tree!!
Anyway, Mum is due to have her third Caelyx on Friday. The side effects haven't been too bad so far but her hands have started to feel sore and feeling really tight, especially when they get hot. She remembers the oncologist telling her to keep cool and now she knows why!! She has some udder cream to rub on her hands! She keeps cool packs in the fridge. Does anyone have any helpful hints to help with this discomfort please?
We're going out today and we're going to get one of those plastic things that you can freeze so that she can take it with her when she's out and about so we'll try and get one of those insulated carriers to keep it frozen for as long as possible.
Mum met her oncologist yesterday and her CA125 was around 380 and it had been over 400 the last time although Mum didn't see the count at the last appt but when she was told of the recurrence on 6 Jan her CA125 was around 355 then and she had to wait two weeks for a CT scan then another two weeks for her first Caelyx. I feel sure the CA25 would have risen during those 4 weeks so I think it's moving in the right direction.
Anyway, best wishes to everyone.
Jane X
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JanePW50
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It's good to hear your Mum is doing well on Caelyx Jane. There are a number of us just starting it or about to start it and it's reassuring to hear some good feedback.
My oncologist asked if I'd rather have Taxol/Carb next time which took me by surprise as the hospital had previously said Caelyx/Carb. Her reasoning was that Caelyx can cause a bit of discomfort in the heat. Is that just for a certain number of days after treatment or is it throughout the whole cycle? It would be so helpful to have your feedback as I'm trying to get my head round the choice.
I feel as though I'm trying to make a decision without really understanding what the issues are.
Hello Annie. What a dilemma for you to have to make a choice!! I think Mum had Taxol/Carb for her initial chemo and when she found out about the recurrence she was told that she could have the Caelyx for 6 months then she might be able to go back to the Taxol/Carb. Not sure if she will have any breaks in between.
I'm not sure if the hand problem is a cumulative thing. Mum is due to have her third Caelyx (I think she's on Caelyx alone) on Friday and the discomfort in her hands has only just kicked in. So it's a bit tricky to work out a pattern at the moment and you'll probably have to make a decision quite soon.
I've been chatting to another lady on Ovacome and her Mum also had discomfort in her feet with the Caelyx. Mum's feet are OK so far. She keeps cold packs in the fridge for when her hands get really itchy.
I think it's true that people react in different ways. Mum was told that she would need to keep cool and she can understand why now!
Sorry I can't be more helpful but hopefully you might get some more helpful responses. I will keep you up to date when Mum's had her third Caelyx. It's difficult isn't it but I think the advantage of Caelyx is that there's no hair loss or very little. I think the Taxol/Carb causes hair loss doesn't it?
Hi Annie, I'm the person Jane mentioned I think, my mam had caelyx in summer time and I dont remember the heat being a problem as such and she had no real fatigue or any other problems, but she did have sore hands feet and mouth from the second session on, she was only able to have 3 due to this, but it gave her the best break from chemo she has had, almost 6 months when she was really back to her old self. I would agree with the keeping cool advice, moisture all the time, wear little cotton gloves to protect and keep in the moisture, and be very particular with mouth care. Hopefully it will work great for those of you about to start it.
Hello Mary. Thanks for getting back to Annie. Sounds as though my mum is having similar symptoms to the ones your mum had. It will be interesting to hear of any similar experiences. Interesting to hear about the cotton gloves. I'll let mum know about those. She still drives and I think some gloves might be useful. Best wishes. Jane x
Definitely. Mam's hands peeled a lot, so the gloves were protective and helped keep in the moisturiser. I think Eucerin with either 5 or 10% urea was what she was advised to use, check the strength with a pharmacist or other professional, as I think too high a urea content will do as much harm as good. The udder cream was recommended too so stick with it if it's working!
Mary that's so kind of you to add your mum's experiences of Caelyx. Mine is an unusual situation as my former hospital made a mistake for my first line and forgot to order Taxol so I only had carbo-platin as a single agent. They said there were no spaces available once the mistake had been discovered so I couldn't add taxol to my prescription for another 3 months which would have meant being on chemotherapy for 9 months and this wasn't recommended.
A couple of friends with medical training have explained to me that Carbo-Taxol is the gold standard and the best combination and that it would be wise to at least have a go. At least I understand a bit more and will go back and check if this is the thinking with my oncologist. It just seemed a bit worrying because it had never been proposed before and Caelyx seemed to be the 'flavour of the month'.
It feels a bit strange when everyone else is on Carbo-Caelyx but I daresay my situation isn't common to be what they call 'Taxane Naive' when there is no medical reason for this.
I've had so much help on this dilemma. I can't thank you, and friends in other groups, enough. It's been a great great relief to share and hear what other people think.
Sorry to hear you had such an unfortunate start to your treatment. That must have been difficult to deal with. Did single agent carbo platin give you much of a reprieve?
Carbo taxol does seem to be the gold standard. Mam's cancer became resistant half way through unfortunately. I had been thinking that as the disease can change and become platinum sensitive again, it might be an option again, but she had carbo gem as third line, which didn't give her very long free from chemo, so am presuming that means that has already been tried and she had remained platinum resistant, I stupidly hadn't made the connection of carbo gem being platinum based until right now - have i got that right?
It's academic really at the moment as mam is not able for chemo, she is on a break from 4th line daily cyclophosphamide and fortnightly Avastin which she has been on since November.
But hopefully either carbo taxol or caelyx will be a good fit for you. It's a hard decision. Mam found carbo taxol very tiring, but caelyx fine apart from the hands feet and mouth, which unfortunately became quite problematic, but still caelyx gave her the best chemo break she has had.
Your advice to others is so good and sensible, i always get something from your posts. I'm glad you are getting good support too.
Thanks so much Mary. I was a bit frightened when they said I couldn't have taxol as everyone else was having it, but then I had a year clear of progression, which is the average for my stage/grade, and another year before I had to have chemo again. The upside of the error was not losing my hair on top of all the other trauma that goes on with diagnosis, surgery, starting chemo and fear discovering I had a life-limiting disease. Losing hair at that time just seems the last straw but really once it goes everyone says they get just on with life as usual.
I'm so sorry to hear your mum seems to be resistant to chemo. I'd heard in the last year that recent thought on Avastin is that it's been seen to have more effect further down the treatment line. I hope it gives your Mum some relief.
As I understand it there are 3 major sorts of chemo used for ovarian cancer:
Platinum-based, such as carboplatin and cisplatin. I was told this was originally discovered as a derivative of mustard gas.
Taxanes (originally made from the bark of the yew tree, such as Paclitaxol
Liposomal doxorubicin, such as Caelyx is originally derived from a fungus.
It makes me giggle thinking of scientists looking at all sorts of queer stuff and applying it to cells to see if it kills them.
Well I'm going for a bit of yew tree bark next time! lol
It' lovely to have friendship and support, and to have a laugh too. Where would we be without this forum and friends here?
Hi Annie, I had Carbo/Taxol first time around and was advised by my team that it is the gold standard of treatment for OvCa. When I was told last Sept that i have recurrence, but no treatment needed at that stage, they explained that if I got through a year from last treatment ending I would be able to go back on that combination again, if not then it would be a caelyx combination. I'm through the year now as you know, next scan in June and by the time I see the oncologist it will be 18 months since finishing 1st line. The only thing I'm not looking forward to about starting treatment again is the joint pains, particularly in my legs. However, this was a side effect for me and not everyone would get that. Its just unfortunate that I have been left with it. I think it would help if I could lose some weight as I have put on about 3 stone. Hasn't been top of my priority but I must try to see if it will help. Ann xo
Hello again Annie. Mum is having her third Caelyx as we speak. My sister took her today and I'm doing some odd jobs for Mum. A nurse is going to come and discuss her hands with her and confirm whether she can take antihistamine. I'll report back. Overall, Mum's side effects haven't been too bad at all with the Caelyx. It's just her hands that are driving her mad at the moment and hopefully something can be done about that. And the tiredness!! But I just think chemo does that to you! Will let you know how things go anyway. Best wishes. Jane x
Hello Annie. I was wondering if you'd started your treatment with Caelyx yet. I know you were undecided. My Mum had her third Caelyx on 10 April and her hands seemed to flare up after the third and now her feet are sore too. She had been using Cow's Udder Cream. She was also taking anti histamines but they don't seem to be helping much now. She is due to see the onc on 5 May so not sure what will happen. But in the meantime I found out about some cream that's supposed to be good called Aveeno. I found out Boots stocked it and got some posted to Mum pronto!!
I also read somewhere that holding ice packs on the hands and feet during the administration of the chemo can help prevent the soreness.
Hope all is going well anyway. Best wishes. Jane x
Hi Jane, I bet your Mum was thrilled with her package of cream for her hands and feet. I'm sorry she's so uncomfortable.
My oncy has now changed the recommendation and has suggested Taxol and Carbo-platin for my next line of chemotherapy because she says Caelyx can be difficult in the hot weather. I must admit I'm not very thorough and would probably forget to apply cream to avoid blisters and itching. I hope it helps your Mum.
I have a scan in 2 weeks' time and an oncy appointment the following week to decide on the plan of campaign. I'm in some discomfort now so ready for the next steps. Meanwhile I'm enjoying the last of my hospital holiday before resuming the regular trips to London for treatment.
I'm sure your Mum will feel so much better after the next treatment. Four treatments under the belt is a good moment because it's well over half-way and one can see the end of treatment in sight.
Hello Annie. Well Mum said her feet feel a bit better with the cream and she had a bash with the hard skin remover!! I hope it will help her 'elephant skin' hands too! Fingers crossed!
I can see your onc's point of view about Caelyx and the hot weather. I've worked it out and if Mum's carries on her last one will be in July so could be tricky. I don't think she could bear the hot weather, the way her hands and feet are now and it's not that warm at the moment. I think Mum had Carbo/Taxol as her first chemo. The oncologist said she could have this again eventually but she couldn't have it when the recurrence was first discovered.
It must have been lovely having a break from the chemo. Good luck with the scan and I bet you will be glad to get the ball rolling with the next round of treatment.
I can't believe Mum is almost half way through the Caelyx. It was so scary when she was first diagnosed at the end of 2013. I can't believe what she's been through and she's still so strong. She amazes me and we have such a lovely time together when I go down.
Well, I'd better sign off for now. I have some work to do but I keep putting it off!!!
Best wishes and take care. Jane XXX
Mum is due her fifith carbo/caelyx next week. She has been up and down on it and no month has been the same in terms of side effects. She has had this month delayed by a week as her platelets are very low and she is also suffering with anaemia. But on the plus side it appears to be doing the job as her latest CA125 results show a drop from 600 to 400.
This is Mum's third line of treatment in 3 years and she is an amazing woman to have gone through it all but she's still positive and strong - in fact we had a few days away last week and she was up dancing every night!
Hello LutonLisa. Just wondering how your Mum was doing. Good news about her CA125 going down. My Mum is on 2nd line chemo - Caelyx. The side effects hadn't been too bad but after the third dose on 10 April her hands and feet became very sore. She's due to see the onc next Tue so not sure what will happen. Your Mum is doing so well. 3 years is amazing. My Mum is also so positive and strong and no matter what life throws at her she manages to bounce back. Such an inspiration.
A bit late with my response but was waiting to get results of CT scan today, it was good news NED after 6 cycles of carbo/caelyx. I found the first 3 cycles OK, I took the steroids but used sleeping tablets to counteract their effect, so made sure I slept well. The 4th cycle was not so good infact I was very poorly, I had a very painful and itchy rash around my upper body, also hands and feet I felt generally unwell the whole time. I Also had bouts of angina type pain, so 5th cycle was held back for a week,even then the nurse called the Dr. to the chemo suite to see me before she would proceed. I was prescribed some meds. to help releive the chest pains and the chemo dose was reduced by 20 percent. Pleased to say 5 6 were fine I am hoping for a longer time due back at the hospital in 3 months. I have been referred to a cardiologist, will keep you posted. Lots of love Bridie xx
Mum had her third Caelyx today. Her hands have been sore and swelling. But good news - she was told she could have antihistamines so hopefully that will help. I got her some cotton gloves from Boots so she is applying the udder cream and wearing the gloves as much as possible and using cool packs when needed. Best wishes. Jane X
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