Caelyx shortage

[Fizzgirl]

I have grade3c OC and its my second recurrence started caelyx and carboplatin last month due for 2nd lot this morning but yesterday afternoon was told that they cannot access caelyx as its in short supply so have been advised to just have carboplatin and pick up the caelyx on my third session. Very upset at this just wondered if anyone was having similar problems

[Irisisme]

Hi Fizzgirl,

I am in Essex and have my chemo treatments at Colchester hospital (in a trust with Ipswich in Suffolk), I had my last (of 6) infusion of Caelyx (I had mine with Cisplatin because I can’t take Carboplatin) on 9th May and there was no hint of a shortage. Where are you? Could it be just local to you?

I was told on two occasions that they had a problem because of a shortage of pharmacists who prepare the infusions for each patient on the morning of the infusion; they were often not ready.

I’d be interested to know more.

Iris x

[Fizzgirl in reply to Irisisme]

Hi IrisI'm in Nottingham and they are still saying they can't source it so my chemo today has gone ahead with Carboplatin only as my Consultant has advised. I could have waited to have both next week but there is no guarantee that caelyx will be available. My treatment has already been delayed a week as neutrophils were too low. Feeling very anxious and stressed never realised this could happen. Thankyou for your interest xxx

[OvacomeSupport Partner My Ovacome Team in reply to Fizzgirl]

Hi Fizzgirl,

Thank you for sharing your experience here. We are sorry to hear that you have been told of a caelyx shortage at your hospital and of the anxiety and stress that this is causing you. We have been in touch with some of our expert advisors to see if they can provide us with some further information, and will be in touch when we receive an update.

Our support team are on hand if you would like to talk anything through. You can send us an email via [e-mail] or give us a call on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to talk through anything that’s on your mind.

Best wishes,

Alice - Ovacome Support

[Irisisme in reply to Fizzgirl]

Hi Again,

I’m so glad the Overcome Support team have stepped in. Hopefully they will help. It seems a bit like a’Postcode Lottery’!

Fingers are crossed for you,

Iris 🤞🤞🤗

[Caleda4]

Hopefully this will be sorted by the time you are ready for your next infusion. When I started that combination, on the very first infusion I had carbo only and it took my CA125 down. The reason was that I have a leaking heart valve and the Onc. was waiting a response from the Cardiologist regarding this. 2nd to 6th were the combination,and I was ok. I finished in August 2022 and I am still on watch and wait. Forgot to say that mine was for 2nd recurrence. Wishing you luck.

[Lovethelilacs55]

I am to start chemo next week and the cancer center has a shortage of carboplatin. There is a carboplatin shortage in the United States. I will be given cisplatin instead of carboplatin.

[Irisisme in reply to Lovethelilacs55]

I have Cisplatin instead of Carboplatin in combination with Caelyx (because I had a bad reaction to Carboplatin). They work the same but Cisplatin is the ‘older’ drug,; there may be more side-effects but I’ve just finished my 6th dose and coped very well.

Good Luck,

Iris 🍀

[testarossa71]

Hi Fizzgirl,

I’m sorry to hear this - it must be very worrying for you. Have you been able to ask your consultant what the impact is, of not having Caelyx in conjunction with the Carboplatin? I’m in a near-identical situation - my first recurrence IIIc OC, and have had 4/6 sessions of carbo/Caelyx. Due 5th session next week.

I presume you’re in the U.K. too? Have you considered making a complaint through PALS? I doubt it will change anything around the availability, but certainly the communication could, and should, be better. I guess you could ask if you can receive a dose of Caelyx on its own 4 weeks after your last combined infusion. That way, you would have had the six full doses. I don’t know how that would impact effectiveness, or even if the NICE guidelines allow for that but, in my experience, if you don’t ask, you definitely don’t get.

I’m sorry I don’t have anything more constructive or comforting to add. I hope you can get some answers from your consultant or CNS.

Best wishes x

[Leniko]

I know that here in the US, There’s a Carbo shortage. Scary! These drugs are a lifeline for many people.

[Newbery3]

I hope they sort this out for you ASAP! Sending you a big cwtch x. Maybe get in touch with your local mp to see if they can badger the hospital to get some sent from a different board? X

[Melnie]

I'm sorry to hear that Fizzgirl, I'm currently on carboplatin and an upgraded version of caelyx called Doxorubicin which is the same but added content, perhaps you can ask for that as it will be easier to get hold of and actually better than Caelyx alone.. apparently! Hope it goes well, compared to previous Chemo of 2 times before I must say though I'm terribly sick with this combination and it's been quite hard on my body this time, they've actually reduced the dose by 25% this time round (next week) so hopefully much better now all the best

[OvacomeSupport Partner My Ovacome Team]

Hello All

We have heard back from our expert advisor regarding chemotherapy supplies.

She has looked into it and has confirmed there is no carboplatin shortage in the UK. Regarding Caelyx, there is a sole supplier and they are still supplying hospitals so there is no UK shortage with Caelyx either.

Fizzgirl, I'm really sorry you experienced a shortage where you are. I hope your team will be able to provide you with some more detail on these specific circumstances and hopefully reassure you.

I hope this is useful. Please do contact us on 0800 008 7054 if there is any further information that would be helpful or want to talk anything through, or direct message us through this forum.

Best wishes

Anna

Ovacome Support