Caelyx

Can any one give me any information on how they have been with Caelyx? I am feeling terribly depressed as the oncologist team offered me a trial of a super duper new drug which has been launched by Pfizer. They are so confident in it that they are paying for the trial themselves. Naturally I jumped at the chance to try something else as Avastin stopped working and my CA 125 was shooting up all the time

I then was told that the Pfizer trial was being done by either:-

1.The new drug alone

2.the new drug and caelyx

3.caelyx alone so they could use the caelyx only patients as a yardstick. After having heart and everything else tested I was told that my name had not been pulled out of the hat to try the new drug. Apparently that was the way people were chosen not through any medical reasons simply luck of the draw.

You can imagine what this did to my morale. I felt it was really cruel to build up hope and then simply dash it to the ground.

I now feel worse than I did when I was first diagnosed , I cannot even sleep lying down in bed as it hurts me so much to lie on my side , I have to sit in my reclining chair all night long. I am severely constipated and feel queasy all the time , Can any one tell me whether the side effects of caelyx include this awful constipation and queasiness? It does not seem to prevent any of the pain and when I feel the lumps near my ribs I am sure the cancer has not shrunk one little bit. Has anyone any advice or good news about caelyx? Does this constipation and sickness wear off eventually? Thank you so much. Up to Christmas when the caner was "stable" with the Avastin i had even been planning to return to work and that has now all gone down the tubes, I am devastated on all counts and any little thing makes me tearful as I am so deperssed. Really dont know how to get over this . Any ideas?

35 Replies

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  • Dear steffi123,

    I take it that you are now are actually having Caelyx as part of the trial? It's not clear from your post mind you I'm quite nauseous from chemo and I know I'm not taking everything in so forgive me if I've missed that fact.

    I can't answer re experiences of Caelyx as I'm now on weekly taxol and finding that incredibly hard, I'm in cyclizine but still nauseous plus other side effects .

    I can relate to not being able to sleep properly, since the end of Jan I've had to sleep propped up on my back with 4 pillows or a large V pillow, I was always a side sleeper and that was hard to get used to but I'm in too much pain if I try to sleep any other way. Rolled up towel or small cushion under my knees helps.

    I have pain management meds plus bowel meds p, and am on a low residue /low fibre diet to keep my bowels working too. Daily management of quantity of laxatives (sodium docusate) and Laxido sachets.

    I think you need to speak with your team or CNS urgently and get your meds looked at. If you're in the trial then this should be managed more closely or so I understood.

    Each day I have two steroids, two Omeprazole, sodium docusate, four morphine tablets, and liquid Oramorph as required for breakthrough pain. Plus cyclizine for nausea, paracetamol and have been told in no uncertain terms to take my meds. Plus Laxido as required.

    What do you have for your pain and constipation? Please speak with your team or nurse ASAP and get meds sorted, please don't continue to suffer, pain and constipation can be sorted and you need help NOW.

    Please ask your GP for a referall to MacMillan, they can help with pain relief and so much more.

    I'm so sorry that you are suffering , it's a very hard place to be

    Thinking of you

    Clare xx

  • Just wanted to say good morning to you Clare, I have been thinking of you. Sounds pretty miserable for you too atm, how long are you on the taxol for? Sending you heaps of love. xx

  • Thank you so much. the first kind words I have had made me cry.I will follow your advice and moan a bit , I have always just plodded on and fought my battles but cannot cope at the moment

  • You sound as if you are having a bad time too. All they have given me for pain management is Oromorph and Paracetamol. Oromorph seems to ease it a bit but I feel so queasy all the time anyway and even when I sneeze it is agony in my middle. Just felt that life was not really worth living like this . My husband is great but thinks that if he tells me to put it out of my mind all will be well. What a joke! I wake up each day trying to be positive and finally just want to sit and cry

  • Hi Steffi, sounds pretty rotten you poor thing, I did six months of Caelyx with Carboplatin every four weeks. I felt quite sick but with additional steroids managed okay, the constipation was tough throughout I managed this with senokot, movicol and 100's of satsumas that was my cocktail daily to help. I do agree with Claire you really need to talk to your CNS and get something sorted as it sounds like you really are suffering.

    Sending a big hug xxx

  • Thanks a lot . I am now really tearful at all the kind words

  • i live in NH where medical marijuanan and i qualified to purchase at my local dispensary. I have lung cancer and chemo is working astonishingly well after just three sessions. BUT, i am bothered with 1) loss of appetite 2) queasy stomach (no vomiting) 3) unexpected mood swings and depression. All these take place in the middle days between chemos. My oncologist supports my decision, in fact totally understands why at 74 , this is the route I wish to take. Eventually,, if things don't go well for me, i intend to use it for pain. My dispensary offers many ways to consume cannibis - tinctures, hard candies, lollipops and the usual baked goods. hope this helps.

  • That's not available legally in the UK though I have heard good reports about it and there are trials happening now. It's not an option for most people on here though.

  • thank you but I have no idea where to buy it

  • Interesting point Nansaki. I was offered medical marijauna by my doctor for chemo induced nerve pain. I was not keen on the culture that surrounds the stuff (I'm in law enforcement) plus I don't smoke, and don't want to eat it, so I said no thanks.

    But I am going to ask again because I heard that a drug company has created a marijauna patch (like the nicotine patch) which delivers the right dose of the active ingredient. It's supposed to be a new treatment for chronic pain.

    Link here nationalpainreport.com/new-...

    I'm waiting to hear what my doc thinks before I consider buying any patches to try. I don't want to get sucked into a scam.

    And I am so sorry Steffi123 that you feel so gosh darn awful. I agree with everyone else, you need some help. Sometimes it really takes some trial and error to get the right cocktail of meds for your body to feel relief. And sometimes, maybe it's a good cathartic conversation, with no fears held back, that we need to have with a counsellor/pastor/priest/wise person in our lives. The mind needs relief too.

  • Steffi.

    I'm sorry you did not get the chance for the new drug,I have just finished 6 months of Caelyx and yes the side effect can be hard. The first month went well then the second month I had a rush all over my body the itching drive me mad and blisters under my arms, I went to show my oncologist I did not wait for my next appointment and she gave a steroid cream and before each Caelyx I had steroids this cleared it all. last couple of months had a problem with toe nails a couple came off not painful you most keep your hand and feet cool and moisturized starts now. Caelyx does not like the heat. I can hear you saying oh how will I get through this but it's not as bad as it sounds .Caelyx is only one a month not weekly and I manged to go to my casual job the whole 6 months and I'm usually a wimp. As for the constipation and queasiness you should be able to get help from your team do ask .

    One last thing The Caelyx did help me plus remember we are all different ,when I asked the same question on this site some ladies had very little side effects.

    As for the new drug you going to be well informed about the out come and this could help in the future.

    Please feel free to ask me anything ....now go in there fighting .. Best wishes Lorraine xx

  • Thank you for replying

  • Thanks Lorraine as long as it is doing something I am happy. but they never tell me anything. I just feel with all this pain it cannot be doing anything at all. I will see what transpires after my visit tomorrow. ANother blow today. MY daughter bought me a reclining chair in which I have been sleeping and it has packed up!!The earliest they can fix it is Monday .I feel as if I am being punished

    HOpe you are OK

  • I had few side effects from caelyx and tended to poo too much at certain times during the 4 weeks. Sorry you are feeling so low. People do have to be chosen at random, though, or the new drugs would never be accepted by NICE as it wouldn't be a good enough trial. Sorry you are so disappointed but caelyx is very effective for some people. Your team should be able to help you with some of the side effects.

  • Had an interesting discussion about the poo question at clinic this morning. The doc felt it was due to a build up as a result of the slight constipation at the start of the cycle. So I'm going to try Movicol from day 1 and see if this prevents it this cycle.

  • Ha! I gradually learnt to start at least two days before but sodium docusate , not movical which I now can't stomach the taste of. after I drank too many on one occasion ; (.

    I just built up from lower doses to max and that helped sort the blockages.....

  • I'm doing that but with docusate. Still trying it out to see when it's best to take it.

  • Hi Steffi,

    Sorry to hear you are having a tough time. How many treatments of caelyx have you had ( and like Claire asking, is this counted as part of the trial now to compare with the other regimes?)

    When was your last scan? I think I am like you - avastin stopped as not working, return of disease too soon but very early stages - and CA 125 rising too quickly.

    I am due for further General check up ( Christies) on 11 th Ap, with bloods , then thankfully our holiday in Italy at the end of April - followed by another scan on return and most likely the start of caelyx treatment, which I am also worried about.

    I haven't felt anywhere near as bad as you, no specific on going pains - just generally worse in myself than when all this started 10 months ago, and much less energy, tiredness and lack of life 'oomph'!

    Do you know or can you tell me the name of this new drug as I would like to discuss it on my next appointment - along with my growing other list of drugs....

    Meanwhile I hope you have a partner, kids, pets , friends whom you can lean on and give you strength and hugs.... minus the pets this does wonders for my morale.... other than that - relaxing aromatherapy baths, reflexology, gentle walks out in the best time of the year....

    Janet 🌈

  • The new drug (I am not sure what it is called ) but is a trial called javelin. I think it is called avezumab.

    I would love to have a holiday but feel too awful.

    This time last year I was working full time and totally loved my job. I cry just thinking about the 200 odd staff I was looking after . They have kept in touch all this time and my MD said he missed my laughter and the place was not the same without me. So you see I am not always a moaning minnie.I have just got so down and feel so awful that I cannot deal with things. Thanks for all the notes of support . It really helps to talk to people in the same boat.

    Irene

  • Yes we do understand. I felt like I'd lost my life as I'd retired but was working part-time and looking after grandchildren. I have now got a different kind of life back but it took me a while to mourn the old one xx

  • Yes I have a partner, dogs ,a cat , a new bungalow on the Norfolk Broads with a third acre garden which I want to cultivate , lovely daughters and grandchildren so lots to love and care for. However, I have got too down to deal with anything at all. Dont even go out in the car any more . I have an oncologist meeting tomorrow so will tell her all about how I feel.

    I had a scan and yes the damn thing was growing again .

    I know there are people worse than me and I should stop feeling sorry for myself but I am finding it very hard . Thanks to everyone who responded. I truly appreciate it

  • Never feel guilty for worrying about you, it's all we know -and you are important.

    Clare

  • Hi Steffi, I have already replied but this morning ( I'm in Australia so when you are getting ready for bed I getting up) reading your your replies I can feel how depressed you are. My saying to you try and cheer up will not help but do talk to your oncologist tomorrow remember we all go through depressed times and I find it does help to post on this site we all understand.

    Best wishes Lorraine xxx

  • Great advice Janet. I started yoga as well but haven't been recently. I found a great teacher who has extra training for health problems. But I don't know what I'd do without my walks. Canal side yesterday as it was easy for my granddaughter who's got stitches in her leg and was making daisy chains instead of her usual tree climbing.

  • I have so far had one Caelyx with Cisplatin as 3 rd line treatment, interrupted buy emergency op for small bowel blockage and complications, going home oday after a month!! I stuck religiously to cold hands feet, no hot drinks and loads of Udderly cream. Constipation I find whiz zing whatever's fruit I fancy in a nutri bullet with a bit for ginger for nausea. I also have Emend, Ondansetron, Cyclizine and of course steroids metoclopromide and I take them all! Found that after a week things improved, carrs water biscuits and breadsticks also helped. You are not a wimp, none of us are, this is very tough and you need to be kind on yourself.

    Hang on in there,

    Claire xxxx

  • Thank you so much Clare . I just feel I am moaning for nothing but it is good to hear of others experiences.

    They have not given me any of the things you are taking so I suppose they think I am coping . I always have in the past.

  • My story is similar to yours. I am on the Pisarro clinical trial. Having become really excited about the possible good effects of a new drug and even being sent a treatment schedule, I drew the control arm of the trial. I was desperately disappointed. However I decided to continue with the trial as the monitoring is so much better. I have had 2 (out of 6) cycles of Caelyx and Carboplatin to date. I had an allergic reaction to the Caelyx the first time but they got that under control with antihistamine and steroids. My bloods dropped too low so cycle 2 was delayed by a week. The Caelyx dose was reduced for cycle 2. I sailed through the first week and then have been hit with severe chronic diarrhoea and abdominal pain for the 2nd week and into the 3rd. I spent a day in A&E being checked out - all was well, no infection, bloods low side of normal. Hoping diarrhoea will stop soon. I have taken an Imodium which has helped. I have not, so far, had any skin problems...

    I am sorry you are feeling so low. I know exactly how you feel about not getting the trial drug - I am still devastated. They build your hopes right up and then pull the rug out from under you with no apparent empathetic feelings at all as to the effect on the patient.

    I know this isn't the good news you were looking for but I wanted you to know you are not alone. I intend to keep going on this trial as long as I am able to and hope for some remission at the end of it. Remember we are all so different and everyone's reaction to these treatments will vary. I do hope things will get better for you. Tell your oncologist every side effect you are experiencing - they can tweak doses and have lots of meds in their arsenal to combat side effects.

    Sending you lots of positive vibes and virtual hugs.

    Good luck

    Janine xxx

  • Thank you so much Janine, I have only got paracetamol as pain relief and only senacot which I purchased myself so I feel pretty hard done by. I never complain which is why I suppose they give me nothing. I must speak more when I next see her.

  • I keep a notebook of all my symptoms and side effects. I take my book with me and write down the questions I want answered and then read them out during my appointment. The Drs I have seen are always very good and seem happy to answer my questions as I go through my book! I have found that "chemo brain" renders memory useless! Janine x

  • This sounds like a good plan. I will do that tonight before my meeting.

  • You need to ask your CNS to help sort out the constipation and nausea. There are meds that keep these under control but sometimes it takes a while to find those that work for you. Some people don't have many side effects with Caelyx, whereas others do.

    You might want to ask your oncologist what drug she would have proposed for you, were it not for the trial. If it would have been Caelyx then you have the advantage of the extra monitoring by being on the trial. If he/she says a different drug, you should ask for the reasons why and not Caelyx and then try and weigh up the pros and cons of staying on the trial. Remember you can withdraw from a trial at any time but if the side effects are well sorted you may get good results. How many doses have you had as I've read it takes a while to start taking effect.

    I think I am on the same trial as you, but it was clearly pointed out that entirely randomly, I had a one-third chance of not getting the immunotherapy drug.

    Hope you get the pain sorted out as well, as it's so difficult when you cannot sleep properly.

    All the best!

  • Hi steffi123,

    I am sorry to hear about your experience of the javelin trial selection. I have very recently been offered the same trial. I was offered two trials but on being unblinded from a prior trial I no longer meet the criteria for the first trial.

    Fortunately I was made aware from the word go that javelin was a 3 arm trial, and that participants would be chosen by computer. I am so sorry that they did not make this perfectly clear to you from day one.

    I will shortly be having the usual tests then fingers crossed for the computer ( but as I am normal hit with the s**t stick through life) I will probably be joining you on caelyx 😀.

    The good points are regular ct scans and being monitored closely 😀

    Speak to your onc regarding pain etc , I am the same , I plod on regardless, smile painted on the face and don't ask for help. I have come to realise that everyone gets to a point when they need help and/or advice .

    Big hugs

    Carolyn

  • Hi there, some of theses drugs can changed your mood. It's only a break from treatment that your mood improves. I do take anti depresents to help me sleep but they do help my mood. I am soon to go on Caelyx as my third line knowing how depressed I have been I am not excepting much. As soon as I find out I will let you know.Good luck let's hope it works cindyxx

  • Caelyx was not bad for me...but absolutely made sure I did everything they said to do...which went against the grain. I had a good experience on various different constipation anti sickness meds. Kept trying different ones till I was relatively happy.

    Insisted..as I said I tried them all. Could tell you more but maybe better if I did that on a message.

    Is extremely difficult tho' and am so sorry about the trial...that must have been pretty devastating. Try to keep as calm as you can and ask about pain killing drugs. Some also deal with anxiety. If you would like private message let me know... thinking of you Chris

  • Steffi you are not moaning if you ask for help. We all need it. Last time I got in touch with them they called me in for assessment and I saw a lovely doctor on the ward who said 'you've done what you can on your own, now we need to give you some help'. That made me feel much better because I hate asking them for anything. From what you've said you've had a responsible job and had many people relying on you. Now it's your turn to rely on others. We can't get through this alone. Hugs x

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