Stopping Caelyx halfway through : Hi lovely... - My Ovacome

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Stopping Caelyx halfway through

Hi lovely ladies just wondering if anyone else had experienced similar problems with caelyx. I started carbo caelyx in January for my first recurrence and from the outset I found it really difficult. My chemo was delayed several times due to low neutrophils and I am now 7 weeks behind schedule. During this time i have also had the injections to boost my neutrophild. Despite not having chemo since April 12th I feel exhausted, wiped out and often have a sore throat , mouth ulcers and swollen glands and aching limbs.Last week I had an emergency admission and was put on iv fluids. My team have decided to put me on just carboplatin for the remaining 3 infusions as they feel that the caelyx is making me ill. I am worried that just having carboplatin is not going to be as effective on the cancer but I have to weigh this up against the constant delays due to low neutrophils. I feel so confused and quite pathetic. I had thought that the caelyx would be easier than the taxol. I coped well with my front line treatment but this round has been so hard. I am worried that I'm not going to be able to beat this beast. I apologise for being so miserable xx

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So sorry that you have had these problems. You must be so disappointed. ☹️ but at least you can carry on with the carboplatin.

Best of luck and I hope that this will be much more copable with.

Best wishes

Fay

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Thank you so much Fay x

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Oh that is so upsetting!

But please don’t stress, Caelyx can be brutal for some and like all Chemo, unpredictable as to what each of us experiences.

For instance, I found first line very difficult and suffered almost every side effect in the book, but Carbo/ Caelyx was a walk in the park.

I just hope your bloods rebound.

I am pretty certain that Carboplatin does most of the work anyway, so don’t worry.

You will destroy the beast.

Best wishes,

Laura

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Thank you Laura. Yes we are all different. My blood pressure dropped to 82/54 last week before I was admitted into hospital and I think that was the decider for the change in chemo drugs. Thank you for being so encouraging and I'm delighted that your treatment is going well xx

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So sorry for you. I just started a treatment with Caelyx, so can’t say yet what the side effects will be. They gave me an injection, a little preemptively, to keep my neutrophils at good level, as i had them low a few times during the previous line. That seemed to do the trick for me and had no more delays.

Sometimes they have to experiment a little, but that may settle after a while.

Hugs

Grace

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Thank you Grace. That sounds like a good idea to preempt neutrophil problems. I hope that your treatment continues to go well xx

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So sorry to hear this. The gcsf injections gave me what I needed to continue but I needed them every week really towards the end of taxol/ carbo . I did have some pain and ulcers and shut myself away till it was all over. I didn’t have the energy to do much except a short walk ever day. It is a much more effective treatment for high grade than it is for my low grade so it may be worth it but only you can tell if the quality of this interim time is manageable. Have they not suggested any other combination?

Sending love

Alex x

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Hi Alex I'm sorry to hear about your neutrophils problems too. My blood pressure dropped to 82/54 last week and I was very breathless when I was admitted into hospital. That's when they decided to put me on just carboplatin. I hope to get on the icon 9 trial after the next 3 chemos xx

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I do hope you do get on it. I had two units of blood which helped me feel a lot better. I’ve always been a donor so it was interesting being on the receiving end. Maybe it’s worth asking if that could be helpful for you too? Xxx

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Sounds like a good idea. Thanks for that xx

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Hi, never apologise for being miserable, you are having a tough time and perfectly entitled, everybody here understands. Carbo on its own is powerful and more tolerable and hopefully will do the job and put you into remission. Do let us know how you get on. I hope the side effects from the caelyx subside very soon. Rooting for you, big hug, Kathy xx

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Thank you so much Kathy. You are so lovely

I feel a bit more positive after my appointment today . My cns said that it was better to put a regular cup full of water on a fire than 3 cup fulls with big gaps between. Somehow that made much more sense to me and I will try to stop beating myself up for being a woos xxxx

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She sounds sensible lady and you are not a woos - this road is tough! Big hug xx

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Thank you and a big hug back to you too xx

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Hi. I was on Carbo/Caelyx around 5 yrs ago for 2nd line (3c). I found Caelyx hard to take, so much so that after my 2nd infusion, my onc reduced the dose by 10%. Still difficult but bearable after that. I credit caelyx with my good remission. I understand the situation you're in but just thought you should have as many opinions as poss. Good luck - I do hope it all turns out well for you. Pauline.

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Thank you Pauline. I also had my dose reduced after my first chemo and they took it down by 20%. I really wish I could keep going with it but my body really seems to be rejecting it. Hopefully the carbo will do the trick.

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Sorry to hear you’re struggling.

After my second round I completely stopped functioning.

My oncologist reduced the strength by 25% and I was able to complete the final four.

Perhaps you could suggest this to your consultant.

Good luck 😉

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Hi there thanks for that. Mine has already been reduced by 20% but my body still isn't coping with it. I just hope the carbo will do the trick xc

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I didn’t find Carbo/Caelyx easy to tolerate, but others have breezed thru it.

I’m sure your oncologist will have a plan for you.

Good luck with everything and keep us up to date with your progress. 👍👍👍

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Thank you for that. I'm enjoying my steroid high at the moment. So nice to have energy xxx

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Hi there. I remember us chatting in January when we were both diagnosed with a 1st recurrence and both facing carbo/Caelyx treatment. I could have written this post! First of all I am so sorry that you have had this experience, but can so identify with it. When I posted in January about it quite a few ladies responded with how much easier it was. For me it has been really hard from the first session. I have been admitted to hospital very ill more than once, used gsf injections after every session (but even then admitted with sepsis), had horrendous ulcers, swollen mouth and terrible pain, and felt so unwell. I saw my oncologist last Friday and, like you, he has decided to drop Caelyx and do the remaining sessions on carboplatin only. I was due chemo on Tuesday, but my bloods were critically low so the session has been rescheduled for next Tuesday. I have an abscess on my neck so am taking antibiotics as well, but generally feel so unwell and low with it all. Please don’t feel you are moaning alone, it is tough and you are being very brave. Sending you love and a gentle hug. Carolyn xx🌸🌼

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Dear Carolyn I am so sorry that you have had to go through so much with this caelyx. It's just not fair. I really hope you can have your chemo next week. I've seen my consultant this morning and he said how much better it was to try to put a fire out with one cup.of water regularly than 2 with a big gap between. That made so much more sense to me. Perhaps it will help you too. I really appreciate you replying when things are going so badly for you. It helps so much to know that it's not just me reacting to this horrible drug . Sending you a big huge virtual hug xxxx

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Ps. Forgot to say that after session one it was reduced by 25%, but I still got some dreadful side effects. I guess it just doesn’t suit me! X

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Mine was reduced by 20% after first one too. Didn't suit me either xxx

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Hi Welsh and Proud. I agree with all of the above.I had severe mucositis with Caelyx and eventually went to Cisplatin with Gemcitabane and then Carbo with Gem after an allergic reaction to Cisplatin ( this was 3rd line).Many options to reduce and change So hopefully u will see your Oncologist soon to discuss. I share your frustration and hope u feel better soon with new options.x

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Thank you so much Joy. I hope to get on the icon 9 trial after this. It'seems good to know that there are more options out there xxx

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Hi Welsh

I am in a similar boat to you with the Caelyx. My first cycle of Carbo/Caelyx landed me in hospital as I couldn't eat or drink, lost 6 kgs in weight and had pulmonary embolisms. My second cycle was delayed because of it. I Went ahead with a reduced dose for cycle 2, however things still didn't go well as I couldn't eat or drink again and my bowels stopped working properly. By the time I saw my oncologist for cycle 3 I'd lost another 4 kgs in weight and my neutrophils were still only 0.7. I'd felt ill from day one continuously and my CA125 rose again from 1800 at the start to 3100.

Treatment has been stopped and currently considering options, so please try not to feel bad. Caelyx has been by far the worst drug for me to date.

Much love xxxx

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Thank you Travel monster. I feel so much better knowing that I am not the only one reacting badly to Caelyx. You sound like you have had a really bad time. I hope you start to feel better soon and that you start to gain some weight. Thank you for taking the time to reply to me when you feel so I'll yourself. I'mean sending a big virtual hug xxx

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Good luck with the rest of your chemo and hope you feel better soon.

Much love xxxx

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Thank you xxx

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You are having a rough time, I too am having a bad experience on single agent Caelyx. I've had 3 treatments and for the fourth they will reduce the dose. It seems some people just cannot tolerate it at all and for others it's great. I've never had pain like it. Have you tried xylacaine viscous for the mouth and throat swelling and ulcers? I find it a little soothing, although short lived.

Carbo can be a very effective treatment on its own, I had a 6 month break from treatment after my second line with single agent Carbo.

Good luck and hope the team can help recover quickly.

Gentle hugs Dawn xxx

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Thank you Dawn. I will try the xylocaine viscous. I've been using gel clair but yours sounds good. Yes I agree about the caelyx. It' s either brilliant or unbearable. We've been unlucky. I hope you too feel better soon xx

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Hi sorry y are having a rough time, I have had two caelyx chemos heading for my third 10 June. I find I cannot do very much except a short walk during the day. I nap every afternoon and sleep like a log at night. My appetite has been affected with the caelyx, of all the c hemos I have been on, this one is tough and I had just finished cisplatin which was suppose to be the tough chemo, I was grand. I am 3 and half years on the journey, stay positive.

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Thank you Julia. This drug does seem to be able to pack quite a punch . I'mean sorry that you are going through it too but I am glad that I am not alone in reacting to this nasty drug. Sending big hugs xx

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Please don’t apologize for being down. You’re going through a miserable time and we’ve all been through some version of it. As Laura said it’s carboplatin that does the heavy lofty. Hopefully it will do the trick! Xx

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Thank you so much Delia. Your comments mean a lot xxx

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Hi. So sorry to hear you are having such a tough time. Just wanted to add that I have had alot of problems with low neutrafils, low white blood cells and platelets. I am 6 months past my 2nd recurrence and chemo and still low bloods, despite taking heaps of immune boosting natural supplements.

Have found out from the USA Inspire site about eating chicken or beef liver pate. (I don't eat meat so do the chicken one.) Just buy chicken or beef livers, very cheap and fry with onions and herbs. Also you can put a boiled egg in. Put in blender, mix together and then put in fridge for 2 hours until cold. Eat with carrot or celery sticks. delicious and within a week, all my bloods were in normal range and continue to be so.

And yes, I am very wary of caelyx but looks like I will have to do it soon on my now 3rd recurrence. Some women say its much easier than carbo/taxol but I am very skittish about it!

Apparently I can do it fortnightly instead of monthly, so dose will be same as monthly but more spread out. I will also ask for dose to be lowered anyway if I get bad side effects. And yes, the carbo does the heavy lifting.

Hope it works well for you. Big hugs from English gal in Oz.

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Thank you so much Tara. I will certainly be making the pate. That sounds like a very pleasant way of raising the neutrophils and so pleased it worked so well for you.

As for caelyx it seems to work really well for many people and with any luck this will be the case for you too. If not the fortnightly idea sounds like a good one. Let us know how you get on.

Sending big hugs back to you in Oz xxxx

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Hi

I also feel like I could have written your post. I’m on Caelyx also. Sorry to hear your have such a rough time Currently getting my 5th infusion out of 6. (Maybe more) Completely wipes me. I would be shattered just from having a shower some days. The first two weeks after are the worst then for the 2nd two weeks I get some good days. Occasionally I get out for walks but not every day like I use to when I was on carbo/taxol or cistoplatin/gemzar. I have to force myself to go out and meet people otherwise I would just be on couch 24/7.

To help with mouth ulcers I rinse with bioextra in the days after chemo to prevent sores and then also use mycostatin if the sores come. It’s horrible as it hurts to eats. Which is hard as eating is a struggle anyway with getting full so quickly. Dealing with ascities too. And of course the usual bowel issues to deal with too. It’s never ending.

Great you have the option of carbo only. Sounds like it will do the job just as well reading all the other posts.

Good luck with your ongoing treatment and hope you get some good results.

Antoinette

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Dear Toni thank you so much for your reply. It is so good to have a kindred spirit in this. Yes our symptoms sound so similar. Caelyx seems to be brilliant for some but hellys for others. I hope that you start to feel better soon and I send you a virtual hug xxx

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Hi

Thank you yes good to know we are not alone. It definitely helps to lift the spirts talking to others who understand. Take care and virtual hug back at you. X

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Thank you Toni xx

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Dear Welsh and Proud , please don’t despair . I am Stage 3 C like you . I know we are all different but , after 2 years being disease free , I just had Carboplatin for my first recurrence .

Due to the information on this Forum , I queried why it wasn’t Carbo- Caelyx and my Consultant strongly felt that it was the Carboplatin that had made the difference. Due to a very good response , I was then eligible for Niraparib as I’m BRCA negative . I have now been on it for 7 & a half months with low Ca 125.

So I sincerely wish that this will be the same for you .

Mary x

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Mary that sounds really impressive. I am so pleased for you and your story really gives me hope. I think I have been concentrating too much on stopping the caelyx and not thinking about the strength of the carboplatin. You have made me feel so much better. Sending you lots of love and a virtual hug xxx

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Hi Sian.

Been thinking of you a lot...you are very brave. I hope the responses you’ve received will lift your spirits, as several ladies were like you in not tolerating Caelyx. We are all different & your body is saying, ’No!’ Mary (above) just had Carbo, with a good result. I’m feel sure that will be the same for you!

Much love xoxo 💜💚💛❤️💛💚💜 (see you soon)

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Thank you so much lovely Linda. Yes the ladies on here have been absolutely amazing. What a wonderful group. I feel so much better and look forward to seeing you soon too xxxxx

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I understand how you feel. I am on carboplatin and caelyx for my second recurrence. All seemed to be going well but due to low blood count my fourth infusion has been delayed twice. Due to see Oncologist on Monday to see where we go from here. Like you my dose has already been reduced by 20 percent. I don't feel my life is my own at the moment as so many plans are having to be delayed or cancelled.

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Yes I know what you mean. My chemo should have been over this month but delays have put pay to that. My husband bought theatre tickets for the times when I thought I would be at my best after chemo and we had to miss going . Life has had to be on hold since January. I hope they can sort out a plan for you. Let us know how you get on. Sian x

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Going ahead with reduces caelyx to 60 percent tomorrow but more worrying is that my ca125 has risen a bit.

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Let's hope that it is a blip and that the remaining chemos at 60% do the trick xxx

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Hi. I really feel for you. I started Caelyx in April and am due to have number 3 next week. I’m finding it tough, very tired all the time , not just for the first couple of weeks like I was with cisplatin/taxol and mouth sores for the first time. I was used to the rhythm of c/t but haven’t found one yet with Caelyx. I ended up in hospital for ten days after the second dose with an infection and neutropenia so expect I may be facing a reduced dose next week. All a bit daunting at the moment. Just need to pull up my big girls knickers a bit more. Hope all goes well for you with carboplatin. Don’t forget it is the star chemo for us.sending hugs. Jo 🌺🌼🌸🌻🌹

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Hi Jo. I really sympathise. I have found it so much harder than carbo/taxol. It just doesn't seem to let up. I'm sorry you ended up with the infection. I hope they can reduce your dose for next time. In the meantime we can wear our big knickers and tuck them up high under our bra straps. Onwards and upwards. Sending much love xxx

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Dear Sian

So sorry you have had such a miserable time with Caelyx. It used to hammer my bloods and I had it very spread out, but I don’t think that’s a bad thing as long as the CA125 is coming down, as it’s your body dictating the frequency of doses. I really hope all goes better with the Carbo on its own.

We all have our challenges, I have washed up in hospital with high liver enzymes, and they are trying to work out if it is a side effect of the Parp or an antibiotic or an infection. Hope I escape soon!

Sending you love.

Sophia xx

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So sorry that things are going badly for you Sophia and I hope you can escape from the hospital soon. How long have you been in? Sending lots of love xxxx

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Hi Sian

Thanks so much. Been here four days so far. I’m having an MRI today and Endoscopy tomorrow, it seems to be a blockage bile duct and becomes horribly painful at night for some reason. I’m hoping they can sort it out before the end of the week. We do have a time of it.

Love to you.

Sophia xx

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Sending you big huge hugs and hoping they can come up with a plan to alleviate the pain xxxx

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Hi there Sophia. I apologise for not being in touch for a while but I wanted to send you all my best wishes and hope that things are improving for you. How are you feeling now? Have the team come up with any answers? Are you still in hospital. Sorry for asking so many questions. Sending you lots of love and a huge virtual hug. Sian xxx

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