Caelyx

[27-359]

Hi. I am on day five of my second Caelyx infusion, and I feel like a limp dish cloth. That in itself is not so surprising, but I have other side effects that concern me. The vein where I had the infusion is very sore and bruised feeling, although there is no swelling or redness. Also, I seem to have lost some bladder control. I woke in the night and went to the loo, but lost control as I got there. This morning, the matt floor tiles look as if they have been varnished, the floor is so shiny where I had my accident! Has anybody else experienced anything like this?

Jenny

[Lyndy]

Unfortunately I think peripheral neuropathy can affect the nerve endings of your bladder... I do recall on Carbo/taxel having some loss of control. Wearing a pad will help you feel less vulnerable and mine did resolve once chemo finished xx

[27-359 in reply to Lyndy]

Thank you for replying. My bladder has never been the same since my first lot of chemo a few years ago, so looks like that is going to be a weak area. Losing another little bit of control of my body is so depressing.

Jenny

[Tesla_7US in reply to 27-359]

Jenny, do kegel exercises for your pelvic floor. Also, riding a recumbent exercise bike or any bike for that matter, has helped me to regain muscle control. Absolutely do kegels because neuropathy can be progressive. Stop that leakage problem now, so it cannot progress.

[27-359 in reply to Tesla_7US]

I do kegel exercises all the time. This experience is something different.

Jenny

[Tesla_7US in reply to 27-359]

OK

[Seasun36-uk]

Yes I’ve had this 😐 Pelvic floor exercises & going to the loo as soon as you feel the ‘message’ to go help to some extent.

[27-359 in reply to Seasun36-uk]

I actually do a lot of pelvic floor exercises, following the weakening of my bladder after my first chemo treatment. I just feel that chemo has completely messed up my water works.

Jenny

[Seasun36-uk in reply to 27-359]

I know, it’s so frustrating/embarrassing/annoying.

Keep going, keep striving.

Sending love & best wishes,

Linda

[27-359 in reply to Seasun36-uk]

Thanks Linda.

Jenny

[ElayneZ]

Hi Jenny - I had my third Caelyx infusion last week. After the first two - I had bladder issues. At times never feeling urge to pee - but alas! Each time I was laying flat. Didn’t happen if sitting or standing. After 3rd - haven’t had the loose bladder issue. Otherwise side effect has been mostly fatigue. I do moisturize especially hands and feet throughout the day. Hope you do well with this cocktail! Lots of positive posts! Blessings!

[27-359]

Yes, this happened to me after I had been lying down. Hopefully it will improve for me too.

Jenny

[mizpurple]

Just a thought - when I was on Caelyx (Doxil in the US), I was very prone to bladder infections that made urination... unpredictable. Also frequently urgent, and sometimes even painful. I started using pads as a precaution. Once my team figured it out and got me cleared up with antibiotics, I started taking d-mannose to support my bladder. Apparently it makes the interior of your bladder more slippery so infections can't get started. I did get through 7 treatments of Doxil, which I personally found very exhausting, but ultimately got little benefit so we moved on to something else. My bladder calmed down significantly once off the Doxil, no more pads needed. Hope you can find a way to tolerate it if it works for you! All the best - Deb in Colorado

[27-359]

Hi. I have used DMannose in the past, for infections, but I don't have an infection at present. It's as though the cork has been removed from my bladder enabling it to trickle at will.........nice!

Jenny