Anyone also switching from Caelyx / carbo to ta... - My Ovacome

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Anyone also switching from Caelyx / carbo to taxol/carbo after 3 treatments ?

Beatyourself profile image
14 Replies

After my problems with bowels that persist but are more under control now with new diet & medicine, we concluded that Caelyx/Carbo doesn’t work for me. The marker keeps on going up and down and after sinking from 277 to 197 it was again back to 270 last week. My doctor said my options are weekly taxol / carbo as it should be easier to give smaller dosis. Other option is do nothing. And he will support me in best way…

He didn’t do the new scan (last is from September) just assumes it is disease on my bowel surface causing this disorder and bloating. I actually believe is from chemo ruining my bowels from all the throwing up. Either way Caelyx is apparently not for me :(

Anyone experience with weekly taxol ?

thank you dear ladies 🙏🍀

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Beatyourself
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14 Replies
Mushymob profile image
Mushymob

Hi beat yourself, glad you have got your bowels under control now. Sorry I can't help with your question. Just thought I'd let you know that I'm still in hospital trying to get my bowels sorted, I've been in here for a 6 day's now with a drain in my stomach. Feeling comfortable but frustrated that my bowels aren't cooperating 😡. Hope you get your questions answered soon and I hope I get sorted soon. These things are sent to try us! Take care ♥️ 😘.

Beatyourself profile image
Beatyourself in reply toMushymob

Hello dear , I hope you are meanwhile out from hospital ? Are you also having air in your bowels?

I am taking magnesium hydroxide tablets which apparently help movement but my belly is still very bloated and can only eat small portion of food, I also still throw up acid. I lost 11kg already so not sure what taxol will do to me. I hope we can get through this quick🙏

Mariej2021 profile image
Mariej2021

Hi Beatyourself I haven't had weekly Taxol yet I have just had my first Carbo Caelyx But I have chatted to ladies having it on chemo day They seemed to be managing ok I think there will be people with experience who can give you a first hand account Hope it goes well

Beatyourself profile image
Beatyourself in reply toMariej2021

Thank you dear, let’s hope it will also work for me 🙏

Good luck with your treatment ❤️🙏🍀

BadgerBright profile image
BadgerBright

Hi Beatyourself Really sorry to hear you are having so much trouble with your bowels. I am currently on weekly taxol after having had carbo/taxol, carbo/caelxy the maintenance drug rucaparib and carbo on its own. I have been on weekly taxol since July this year and I am doing okay with it. I just have some copable with neuropathy symptoms in my legs which have subsided by Mon evening. I do three weeks on and then have a week off. During my week off we plan breaks and visits to friends and family which has worked out really well. At my last scan my oncologist said all my nodes had shrunk and the one in my lungs were stable. My CA125 has come down from 143 to 80. Next scan in mid Nov so I have my fingers crossed. Do hope this is helpful with any decisions you have to make. This disease is certainly a challenge. Look after yourself. BB.

Beatyourself profile image
Beatyourself in reply toBadgerBright

I see I didn’t reply to you, sorry about that , my days were quite miserable. Thank you for sharing your experience. I have now finished my 3rd dosis of weekly taxol and is quite manageable indeed, even my hair is staying on thanks to cold cap. But my limitation is still bloated bowels so not much energy for fun stuff yet 😔

I hope your November scan will show NED! Don’t give up hopes 🙏🍀🕯️

Mushymob profile image
Mushymob

Hi beat yourself, I'm still in hospital, 2 weeks now. Not much bowel movement. Currently only having ensure drinks. Still have tube in my stomach draining during night, unplugged during day. Still taking lots of laxitives but not much joy. Waiting to see gastric team next week so might know more then. Fingers crossed 🤞 xx.

Beatyourself profile image
Beatyourself

I am so sorry to hear you are still in such trouble and they didn’t manage to help you so far. I can fully understand that you are not feeling happy. This is such an unfair disease :( I pray for you that it gets better 🙏🙏🙏🍀❤️😘🤞🤞🤞

Kazzh profile image
Kazzh

Caelyx isn't working for me either 😕. My 1st recurrence but my CA keeps rising. I'm bring considered for Taxol only as the next option, so please do let me know how you go on this 🙏 really Hope you get some good news soon, you're having a really rotten time by the sounds of it xx

Beatyourself profile image
Beatyourself in reply toKazzh

Dear Kazzh, sorry to hear it is not working for you either, it is so disappointing 😞 I had my 4th weekly taxol + carboplatin and I am managing well just don’t see yet result I hoped for 😞 so I really hope it will start working 🙏

How did you decide? Do you feel good otherwise? Because I have lot of issues with bowels and eating 😞

Best of luck for you 😘

Kazzh profile image
Kazzh

Morning

As Caelyx hasn't worked atall for me, I will be starting Taxol only very soon. I can only have Taxol. They would ideally give me Taxol with Avastin but avastin is risky as it affects the bowels with risk of perforation so I can't have it.

I haven't felt well atall this last month and my pain relief is managed by the palliative care team in the community. I'm on morphine patches and about to start gabapentin.

I know how horrible bowel problems are having had a twisted bowel and surgery. Thankfully for me 🙏 they are OK atm. Tbh I couldn't cope with extra issues atm. Yesterday I was advised scans show spread to my liver, bone, tummy, neck & more in lungs. Devastating news.

Have you looked into trials? I may be able to start one through Royal Marsden but I too have decisions to make about what is best. I think my oncologist doesn't hold put much hope with just weekly Taxol and says getting on a trial woul be better. It's alot to think about and I'm sure you're exhausted like I am. Get as much support as you can to talk things through and weigh up the pros and cons.

If you send me a private message I can share the links I have to alternative treatments.

All trials are listed on cancer research and your oncologist will know more.

I know how tough it is, cancer is not discriminatory, I'm 56 but was a regular swimmer, cyclist and walker. Now I have little energy for much atall. It's gutting. Keep hopeful, must have hope 🙏❤️ xx

Beatyourself profile image
Beatyourself in reply toKazzh

Dear Kazzh, what a devastating news indeed. And you still sound so strong that is so inspiring !! I also can’t add avastin due to bowel perforation risk at the moment.

My oncologist had taxol as only option for me and said I am not right candidate for any trial but I am in the Netherlands. Also cannot accept that :(

Seems you have more options in UK. I should be looking at it then too.

I cannot figure out how to send private message from here but I am interested in alternative solutions.

Fully agree with you, I used to run marathons, healthy eating :( and am 42.

We must conquer this disease!!

🍀🙏🕯️

Kazzh profile image
Kazzh

I will send you a message. You will find it on your profile in messages. I will send it next couple days. Trials are VERY specific and your oncologist will know if anything may match your exact diagnosis. The ones I'm looking at are worldwide but they are specific to clear cell cancer which I have & is very rare.

You're right, we must fight on and not lose hope. My goal is take each day as it comes, literally and find joy in it. The little things really do matter, to be in control of my pain (I'm getting there) and make a decision I'm happy with about what treatment to follow. Having that control helps alot xx

Beatyourself profile image
Beatyourself in reply toKazzh

So appreciate your help and attitude ❤️🍀🙏

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