Terrible Symptoms from Caelyx

[georgialocksss]

Hi ladies!

Just looking for some adivce for my Mum, who's half way through her course of six Caelyx treatments. For context, she was diagnosed HGS stage 3c/4a in Jan 2022, had three rounds of chemo, optimal debulking surgery with full hysterectomy and removal of omentum, and then three more rounds of chemo. Declared NED in August 2022, immediately started Avastin, but blood tests in January showed a slow but steady rise in her CA125. Turns out it was a small recurrence in the peritoneum, so she was immediately put on a course of six Caelyx treatments — we're curently half way through.

The treatment is woking really well; her latest scan showed a significant reduction, and CA125 is back down to 38 so almost in normal range already. We're obviously over the moon — but it's made her so poorly, and so I said I'd ask if anyone had any advice.

She's had a few mouth ulcers and dry hands as expected, but mainly it's been completely messing with her tummy. It didn't help that last round they forgot to prescribe the anti-sickness (so she was vomiting for about 24 hours straight) , but basically she's stuck in a horrid cycle of constipation, terrible griping stomach pains, and just generally being pretty sickly. Laxatives haven't really helped, and the griping pains and bloating are really limiting her day-to-day activities.

Her consultant has been great, and we know it's just a bad reaction, but would be v grateful if any of you have tips and trips, or are happy to share if you've had a similar experience.

Clearly, it's fabbbb that it's working — but just want to see if there are any ways we can make the next three months a little easier for her!

Thanks a lot,

G xxx

[Caleda4]

This sounds really awful. I always ask the Oncologist for movicol for constipation,very rarely need them, but a just in case scenario. These are powder to dissolve in water and are flavoured. You should really speak to the team, as she should not be this poorly Great that the combo is working. I had this last year,and so far so good. I hope you can get this sorted quickly. Take care.x

[Chelt]

Hi I’m also on Caelyx and I have been the same, had a pet scan and it showed it is working but I have awful sickness and feel so week for about 7/8 days after. Even with anti sickness tablets I am still poorly. I also have been suffering with constipation, I have been prescribed laxido which does help. I am stage 3/4 high grade ovarian cancer. I am just convincing myself that it’s all worth it if it’s working. Hope your mum stays strong, it’s hard but hopefully it will be worth it in the end. Take care x

[Inguc_is in reply to Chelt]

Do u have doxil alone? Was ur ca125 went down after 1st cyrkle? Or up?

[Chelt in reply to Inguc_is]

Hi yes had just doxil and my ca125 went down after 3 cycles. Just had my recent pet scan and it is much better. I am going to be starting maintenance chemo in two weeks.

[Inguc_is in reply to Chelt]

After first chemo it also went down? Or up or it went down only aftet 3rd?

[Gakaxy57]

Hi sorry to hear about your mum.I know what is was like to have ovaries, then complete hysterectomy and omentum removed. I suffered badly with bowel movements stomach pains and bloating.

It is now 2 years since that operation and my system is getting better. I still have pain on scar but guess this is nerve damage.

Previously attended hospital every 3 months now been changed to every 6 months my CA125 levels are currently static not going up or down so that is a good sign. It just takes time for your body to recover from treatment.

Hears hoping that things get better but if they don't feel right please go back to doctor.

Take care

Lynne x

[Inguc_is]

Did she has doxil alone?? Did ca 125 went down after 1st and 2nd iflusion?