Is anyone else on Caelyx?

[NewZealander]

I have recently started on monthly infusions of Caelyx after new mets appeared in my liver while on Everolimus and Exemestane. I've experienced significant nausea, some vomiting and swollen/painful hands in the first fortnight. Can anyone tell me if the side-effects lessen as the month progresses, or do they build? Thanks!

[stardust1965]

Hi New ZealanderI am sorry for your progression and for the side effects you are experiencing. I can’t offer any advice as I am still on my first line of treatment (Letrozole & Ibrance) but you could search in the search bar at the top of the page. I hope others here will respond too.

I really just wanted to say I like your name! I’m one too but have been a global trailing spouse for 35 years. Gosh that makes me sound old but I’m (only 😉) 55!

Hoping your side effect will improve soon.

Vicki

[NewZealander in reply to stardust1965]

Thanks so much for your reply Vicki, it's so much appreciated. I had never noticed the search function before but I've just used it and found other comments on Caelyx, which were really helpful. It's so nice to hear from a fellow Kiwi Vicki, I hope you're somewhere in the world that has Covid-19 under control and that you are as safe as is possible. With best wishes for your treatment too. Jan x

[stardust1965 in reply to NewZealander]

Hi Jan

One of my side effect is my memory... maybe...!!Once something is out of sight... I did mean to reply to your message.

I am in Hungary which sadly is in its third Covid wave so I’m indoors mostly with an occasional walk in the local area. We moved here in September so I haven’t been able to explore yet. I have my hopes pinned on summer.

I was lucky enough to be in NZ this time last year so have lovely memories to hold on to for now until it is safe to travel once again.

How is your treatment going? I hope your side effects are more tolerable now. Vicki

[NewZealander in reply to stardust1965]

Hi Vicki, it was so lovely to get your message, thanks so much for taking the time to make contact. How nice that you were in New Zealand last year and that you have some nice memories to relive. I'm sorry to hear that you are so restricted in Hungary, let's hope the new vaccines will slowly make some significant changes to that. I'm actually in Australia now, I flew over last year when New Zealand went into lockdown as I wanted to be with my sons (and 6 lovely grandchildren) who all live in the Gold Coast. What a good decision it was as I wouldn't have been able to see them at all if I had stayed in New Zealand. The Gold Coast is relatively untouched by Covid. We have to scan QR codes in cafes and restaurants when we arrive, but that's the only restriction we have. However, we don't take those freedoms lightly when we see what's happening in the rest of the world and the restricted lifestyles so many people are having to endure. I'll be stopping Caelyx next week as it isn't working for me unfortunately. I am considering SIRT surgery to my liver - this is where they inject radioactive beads to attack the cancer tumours, so I'm hopeful that will be successful. With best wishes to you Vicki with your treatment x

[stardust1965 in reply to NewZealander]

Hi Jan, I am sure you made the right decision in choosing the Gold Coast and family over staying in NZ. I am sure you are enjoying both! I love the beach and hope you've been able to enjoy it with your grandchildren. The SIRT treatment seems very promising and I hope you have good results with it if you choose to do that. Let me know how it goes.

Hungary is well into the third Covid wave and this week have gone into even stricter lockdown measures. There seems no end in sight. I've decided to get stuck in to the unused greenhouse I found in the garden here. With spring around the corner it can become my lockdown project! Vicki

[kduck in reply to NewZealander]

Did you do the SIRT surgery to your liver? How did it go? Is there a protocol in order to do this surgery, a certain amount of liver mets or size of mets?

[NewZealander in reply to kduck]

I haven't had the SIRT surgery as I have been offered a place on a drug trial that targets my specific DNA mutation, pending successful screening, which is quite rigorous, so fingers crossed. I don't know if it matters how many mets or their size, to qualify for the surgery, but your liver has to be functioning reasonably well. I think it's a great option and I will go ahead with it if the trial doesn't work out. My other mets (pleural cavity and spine) are stable, but those in the liver are progressing, so I need to get that sorted before my liver function is impacted. It's certainly worth you checking out - best wishes.

[SeattleMom]

So sorry for your side effects. This drug is also known as Myocet, so perhaps someone else may have answers regarding this?God bless you. Prayers that the side effects lessen in the days ahead.

XXOO

[NewZealander in reply to SeattleMom]

Thanks so much for your response, that was much appreciated. Great to know that it is also known as Myocet - I'll update my post. With best wishes to you x