Caelyx/Carbo & stomach issues

[Beatyourself]

Dear ladies,

Hope you are at good place. I had just my second chemo of Caelyx & Carbo and I suffer from stomach issues almost whole time. Is day 8 and is still need to throw out every day, even if there is nothing in my stomach - then is acid coming out. The medicine against nausea doesn’t make difference. I also can’t drink simple water, I am sick just looking at it and find difficulties to find drink I could tolerate. Also due to burning sensation in my mouth. Anyone with same experience and good tips how to escape this ? Thank you 🙏 🍀🍀🍀♥️

[Robbo16]

Hi - I’ve not been on this regime myself but would suggest you contact your cancer nurse who should be able to suggest alternative anti sickness meds. Hope you feel better soon xx

[Beatyourself in reply to Robbo16]

Thank you for your message, I did have a contact and finally things are getting better. Is reminder again not to suffer days before I make a move to contact doctor.

[Bluedoor24]

Hi, sorry to hear you are having such a rough time. I had my first of this combo 2 days ago, I'm getting some nausea and indigestion, I have found omeprazole and cyclizine first thing before trying to eat is helping. Also had advice from other ladies about regular mouth wash and fluids, Caelyx does seem to make moth more sore though.

Like you niraparib didn't work for me so keeping everything crossed this does!

Hope you find the right combination to help and feel better soon xx

[Beatyourself in reply to Bluedoor24]

Thank you for your message ! Sorry to hear you are also on this journey. How are you holding up now? I had switched indeed also to omeprazole (had lot of acid reflux) and got olanzapin (Zyprexa) after I cramped up in pains so bad on Friday I had to go to hospital and got infusion. Luckily things look better now again, I can eat and drink but my belly is so sensitive like someone has been kicking it.

Hope you are doing well and it will make right impact !

Best wishes to you 😘🙏💚

[Bluedoor24 in reply to Beatyourself]

Hi, so glad to hear you are starting to feel better🩷 I am now day 6 and feeling terrible, the nausea is much more difficult to control this time round ☹️ It is all very much trial and error I think, until we find the right combination🤞 You would think it would get easier to cope but not so sure about that🤔

Sending you best wishes and speedy recovery🙏 Alison 😘

Keep fighting👍

[Beatyourself in reply to Bluedoor24]

Dear Alison, exactly that was my expectation too, that I will handle it better. But I was never so nauseous with taxol as with this one Hope we can figure out best medicine for it. Maybe you could also try with olanzapin. It did work for me.

Thank you and also for you speedy recovery. 💚🙏

Best wishes,

Bea

[Bluedoor24 in reply to Beatyourself]

Hi Bea, thank you I will ask oncologist about it.Thankfully the symptoms seem to be settling now, one week since chemo, so I'm hoping for a couple of weeks to catch up on calories before starting it all all again!🤞Are you having 6 rounds of this combination? Apparently I will get a scan after 3, then continue if it's working.

I think I found it more difficult this time as only 4 weeks ago I was on holiday in Portugal and feeling normal for for the first time in 12months😒, hopefully I can do it again next year🫰

Hope you continue to manage this regime and it does it's work👍

Best wishes to you too🩷

Keep in touch,

Alison xx

[Florrie2 in reply to Beatyourself]

Hi. I’m interested to hear about your pains. I started caelyx last Wednesday and ended up at A&E on Sunday due to a severe pain in my abdomen but they couldn’t find anything wrong. My main cancer is on my left and this pain is on my right, radiating around my hip. I’m on paracetamol and morphine but it’s still bad.

Were your pains due to sickness and diarrhoea?

[Beatyourself in reply to Florrie2]

Hi Florrie, sorry to hear you suffer with pains too My big cramp pains appeared immediately after dinner ( brussels sprouts with potato), so probably my sensitive stomach + bowels couldn’t cope with sprouts and I underestimated it, this is when I had to go to hospital. This has now eased out but I do feel pain both in my abdomen as in my back (this is more like muscle fewer or pain after you hit yourself badly). I experienced that also after first dose, for 3 weeks I had to walk slower and hold belly at times. I have the same now. Also feel it when I try to stand up or get up from bed. I did have 2 ascites drainages in August so thought it must be combo of cancer, ascites, drainage, chemo. A least this is what doctor said. Last week they discovered some possible cyst on ultrasound pushing on my kidney which was not there before so I have to go for new CT. I really hope is nothing serious Did they do some scan with you too? I chose for caelyx because it seemed women tolerated it better but I do not seem to have same expererience. Or maybe is coz my body is still damaged from the treatments last year and now from cancer and everything is just tougher now

Hope you will get rid of pains soonest, pls let me know how it is going for you 🍀

Big hugs 😘 Bea

[Florrie2 in reply to Beatyourself]

Thanks Bea. A&E did a scan but it was the same as my previous scan. I’ve now been given some stronger pain relief. I’ve got a large stomach hernia so I tend to hold my belly anyway. They’ve made me an appointment with the oncologist on Monday so maybe I’ll find out more then.

Good luck to you x

[Beatyourself in reply to Florrie2]

Thank you Florrie, good luck to you too ! Hope they will detect the problem and can have a quick solution. Is so not nice to be in pains. Best wishes and good luck too xxx

[AuntyOrange]

Hi. I have been on that combo & not had that side effect. That sounds terrible & I don't think that your oncologist would like you to be suffering that much. He/she might need to change the amount of chemo you are having. In regard to the drinking, have you tried flavouring your water with maybe a cordial or mint leaves or maybe just drinking some weak herbal tea, peppermint is good. You need your strength so if that doesn't work, I really do think that you will have to talk to your oncologist or oncology nurse to find a solution as soon as possible. Sending big hugs to you.

[Beatyourself in reply to AuntyOrange]

Thank you for your kind message and advices. It took some days but I finally seems to get back to normal. I changed medicine for stomach indeed and can also drink simple water. But this was tough call. Great idea for weak herbal tea, it also worked for me. Big hugs to you back 💚🙏😘

[Joanne59]

I also had terrible stomach problems when on chemo, I started to take a 50 billion probiotic and it did help, not a complete cure but improved. Good luck 🤞🏻 x

[Beatyourself in reply to Joanne59]

Thank you for advice. I didnt hear about this before. Is there specific brand you recommend or is also same?

Sorry to ready you also had same issues. Many hugs to you x

[Sybil71]

I had the same regimen + bevacizumab and I had terrible diarrhea issues. May be because my intestines was shortened with the surgery. I was taking pantaprazole first thing in the morning. It helps with the acid issues. I also used 1 or 2 onzyd (ondansetron) whenever i felt nausea. May be you can ask your oncologist for these drugs. I hope you find the best solution for you as soon as possible. 💐

[Beatyourself in reply to Sybil71]

Hello Sybil, interesting that you had also bevacizumab to it, my oncologist said that he could only offer that with gem / carbo combo, but maybe is Dutch protocol? He did told me that bevacizumab could cause bowel perforation which I was quite surprised about. I am suffering more from constipation actually. Thank you for recommendation, always good to know, there is lot of medicine to still choose from.

Best wishes for you 💚😘🙏

Bea

[Sybil71 in reply to Beatyourself]

Thank you dear. Bevacizumab seems like the drug of choice to add in my country. (I’m in Istanbul, Turkey). They add it some time after the surgery. I think she included it on 2nd or 3rd cycle. I’m now on mirvetuximab (Elahere). Best wishes to you too 💐

[SopSinger]

I'd recommend you speak to your chemo nurse or team. In the UK you would have a 24-hour hotline to call - do you have that? There are many different options for anti-sickness and it sometimes takes some trial and error to find what works for you as an individual.

[Beatyourself in reply to SopSinger]

Thank you so much for advice, I have tendency to suffer long before asking for help It took a while but now it seems to be coming to normal again with changed medicine (and time I guess). Best wishes to you 😘💚

[delia2]

Hi. I had the mouth sores but not such bad nausea. I have learned that taking an antacid really helps. In the US the brand name is Pepcid. I think it is ranitidine. You can take it twice a day and it really helps.

[Beatyourself in reply to delia2]

Hi Delia, thank you for recommendation, I have then something else to try on my next round. Best wishes to you, hope you are doing well 😘💚

[KimLJ]

hi there. It was the same for me. I just kept reporting it and have a few changes of anti sickness tablets. Until one worked. For me it was Metoclopramide. Do not suffer in silence. Use a good mouthwash. Your Chemo team will either give it to you or advise what to get. Phone them. Good luck xx

[Beatyourself in reply to KimLJ]

Thank you Kim for good piece and advice, I will be more proactive next time (hope thought it is not needed but guess that is desperate wish). I actually did have Metoclopramide but that didn’t work for me very well. Best wishes, Bea

[Sue-333]

I had the same combination and the same effects. Nurse said the steroids were creating stomach acid, I took omeprazole as soon as I got up, a while before eating and it made it better. Good luck

[Beatyourself in reply to Sue-333]

Hello Sue, thank you ! I actually got in the end also same medicine in the end and it seems to work now. Thank you for recommendation. Best wishes, Bea 😘

[Sue-333 in reply to Beatyourself]

Thank you, I'm So glad you got the same, it's such a difficult journey anyway you really don't want extra continous nausea added to it! Very best wishes to you, hope all goes well x