Carboplatin and Caelyx chemo combination

[Bluedoor24]

Hello everyone. Just wondering if anyone has had the combination of carboplatin and Caelyx for recurrence? I had review following scan this week and was told some recurrence in lymph nodes, pelvis and axillary. This wasn't a complete surprise as since finishing my treatment in February and starting niraparib in April, my ca125 has steadily increased to 400 from 160 after top up chemo. In fact it has never returned to normal levels since diagnosis, although scan following surgery and chemo was ned. It's disappointing as was hoping for a little longer before recurrence but hopefully it has been found early enough to respond to treatment 🤞I would appreciate any advice regarding this combination, if anyone has experience of it, oncologist said I shouldn't get any hair loss and it's 4 weekly so longer recovery time. Thank you in advance for any help with this

Alison 😘

[Doglover1410]

hi Alison

I’ve had that combination twice and I found it ok. No hair loss, the worse for me was the m VERY dry hands that were almost painful. Lots of Aveeno moisturiser helped and I would start using it now to save yourself the issue.

Bit of constipation but nothing major, didn’t take anti sickness because they make it worse for me.

No hair loss, and like you say 4 weeks apart so time to recover.

Hope that helps, shout if you have any more questions

Alison (another one!!) x

[Bluedoor24 in reply to Doglover1410]

Hi Alison! Thanks very much for your reply and advice 👍 I'll make sure I start with the hand cream. How long did nausea etc last after each cycle? With my last chemo it took about a week to feel ok, then only 1 week of normality before starting again, hoping to have a bit longer with the 4 week break🤞

Thanks again, for your advice it is much appreciated 🩷

Alison x

[Doglover1410 in reply to Bluedoor24]

From what I remember it wasn’t too bad. I don’t remember feeling sick, but ‘wiped out’ but not for many days. As with them all I think, it built up over time but was no longer than a week, if that long even!

In fact I chose to have 4 sessions after my last recurrence, so couldn’t have been that bad.

Lots of water, I used Gingins, they are little ginger sweets you can get from Holland & Barrett or Amazon, help to relive the queasiness, as I really don’t like anti sickness drugs and won’t take them!!

I’m now on a trial and still have unopened anti sickness in the cupboard!

My main tip would be the moisturiser. I’m not a girly girl but really needed to use it.

When do you start? I hope it’s as ‘easy’ for you too xx

[Bluedoor24 in reply to Doglover1410]

Thanks Alison,I'm due to see oncologist on 2nd Sept when she will decide start date, she wanted me to repeat bloods first as bizarrely my ca125 had dropped from 500 to 400 but I unknowingly had covid when it went up to 500, so they think that was why🤷‍♀️ Also not a big fan of anti sickness drugs, if I have to take cyclizine I usually cut it in half but I will try the ginger sweets. I'm off to Portugal for a weeks holiday on Friday so will hopefully have plenty of time to moisturise while getting some sunshine and relaxing 😎 I've had a problem with very dry skin since the first lot of chemo last year so that's a great tip. Will let you know how it goes, if that's ok?

Alison x

[Doglover1410 in reply to Bluedoor24]

Aww fabulous, have a great holiday and try to forget about it all for a week.

Good luck and yes keep in touch xx

[Glamping14]

I’ve just had my second cycle of this combination. My first cycle I had a reaction against the Caelyx, heart and back pain so they stopped the Caelyx and continued with the carboplatin.

Monday, I did manage the Caelyx, again with reactions, so it was paused then restarted. My consultant is very keen for me to have the Caelyx.

This is my third reoccurrence- originally starting 5 years ago with Fallopian tube cancer, then August last year it had returned to my peritoneal and liver. I only managed 5 of the 6 cycles as my body was struggling with the Gemcitoplen and carboplatin. I was being supported with potassium and magnesium infusions.

Now just under 6 months later I’m battling again. I’ve not experienced any hair loss as of yet but have noticed my hands and feet are getting dryer.

Good luck with your journey my fellow warrior xx

[Bluedoor24 in reply to Glamping14]

Hi, thanks for your reply and sharing your experience. I had a reaction to the carboplatin with my 7th and 8th cycle last time so will have it slowly this time but first time for Caelyx. 🤞will go ok. Hope you continue to tolerate the combination and keep fighting this disease. Good luck with your journey too, it's a good feeling that we're all in this together and not alone ❤️

Alison x

[candyapplegrey in reply to Glamping14]

Sorry to hear about your recurrences. Wishing you the best of luck. xx

[candyapplegrey]

I have also been offered this combo and a third surgery beforehand. I am holding fire at the mo. My worry would be that it doesn't seem to have a good success rate from what I've read here. It seems to slow growth/decrease size of tumour for the first 3 months after which tumour starts growing again.

If you search carbo/caelyx on this site you will also find other ladies' experiences with it.

Best of luck with whatever you do. xx

[Bluedoor24 in reply to candyapplegrey]

Hi, thanks for that information I'll check it out. Were you offered an alternative treatment? It's always a tough decision as I strongly feel that amongst all of this intervention, trying to keep life as normal as possible is the most important thing. Especially spending quality time with family and friends 💕 Good luck to you too xx

[OvacomeSupport Partner My Ovacome Team in reply to candyapplegrey]

Dear Candyapplegrey,

Thank you for your comment. Carboplatin and caelyx has been shown as an effective treatment for recurrent ovarian cancer which is why it is so widely used, and its always really important to have a discussion with your medical team about your own individual circumstances. They can let you know what they recommend as the most appropriate treatment, for you to consider and in order for you to make a decision that feels right for you. If there is any information you need or if it would be helpful to talk things through to plan for a conversation with your team, please don't hesitate to get in touch with us.

Best wishes,

Alice - Ovacome

[delia2]

Hi. I had it for first recurrence and as you say found the four week cycles gave me ample time to feel normal. In addition to the lotion on hands and feet I suggest frequent mouth rinsing with warm water and salt or bicarbonate to prevent mouth sores. I got very low platelets but they bounced back in time for the next treatment. I did have several days of fatigue and nausea. Good luck!

[Bluedoor24 in reply to delia2]

Hi, thank you for that information. I'll give that a try as I did have a very sore mouth with my last chemo. Hopefully the longer gap between will make it a little easier to cope with side effects🤞I need to keep fighting fit to help take care of my beautiful 1 year old granddaughter 😊Good luck with your journey x

[Towergirl]

Hi, I’ve just finished Carbo Caelyx combo for recurrence. Did lose my hair just a bit left on top. Was told I wouldn’t but didn’t take on my hair was very fine also lost hair twice before ☹️.

Chemo was every 4 weeks but last 3 was delayed because of low platelets , had GFS injections to help but still 6 week’s apart. Otherwise ok just dry skin .

3 month CT scan showed slight reduction but end scan had good reduction but not NED., still showed a small part of original recurrence.

Hugs good luck with treatment.

[candyapplegrey in reply to Towergirl]

Hi, I was told I would not lose my hair with that combo so worth knowing. xx

[Bluedoor24 in reply to Towergirl]

Hi, thank you for your reply, all the information I have found very helpful in preparing for treatment. I've got my review with oncologist today so will hopefully have a better idea of the next steps🫰I had gfs injections with chemo after surgery as neutrophils kept dropping so will try to remember to remind them about that. Thanks again, hugs and best wishes to you too🩷

[GaiaLuna]

Hi Alison,

I have HGSOC diagnosed April 2001.

Started my third cycle of chemo in early July- carboplatin and Caelyx. Just had my third treatment.

I have suffered from bad nausea for about 7-10 days post treatment. I have been given new anti emetics each time- am hoping the latest drug will help. So far so good.

The chemo does make me feel unusually tired.

I was told conflicting advice about whether I might lose my hair so have opted to try using a cold cap - so far so good.

A sensitive mouth is another side effect I have experienced. Mouth washes etc are available to help alleviate mouth ulcers etc.

What is really positive about the chemo cycle of every 4 weeks is that I get time to recover and enjoy some strong, more normal and joyful days.

All best wishes to you.

[Bluedoor24 in reply to GaiaLuna]

Hi, thank you for that information. I'm seeing my oncologist today so will probably have a start date for treatment, hopefully any hair loss, nausea etc will be manageable, at least I'll be more prepared for it now👍I've just returned from a week's holiday so feeling fighting fit and hope the longer break between treatments will, as you say, give me more days to enjoy the normal things in life, especially spending time with my beautiful granddaughter💕Best wishes to you too, Alison x