After caelyx & carboplatin

[Lesinbeds]

Hi there, I’m having my 6th cycle of caelyx & carboplatin but not sure what will happen yet! I obviously will ask my consultant when I speak to him this week but wondered if there was anyone on here who perhaps had a prohibitor after or was it just wait and see how long it will be before the cancer comes active again!

We all live in the world of not knowing! It’s strange sometimes I can put this to the back of my mind but other times I do feel concerned… thank you in advance my lovely warriors 💕

[27-359]

I was out on a PARP when I finished Carbo/Caelyx. I

Jenny

[SUE7777]

If the Caelyx/Carbo has worked you will probably get offered a PARP for maintenance.

[B0ad1cea]

Hello again lesinbeds. You and I are in exactly the same situation. My last treatment with caelyx/cargo is on Wednesday, then I have a scan on 21st and consultation with my oncologist on 6th October. I'll keep in touch and let you know what happens next, I feel scared of being abandoned with no plan for future treatment, but maybe I'll know more after my consultation. Good luck with your treatment and please let me know how you get on.Love Kathy

[Lesinbeds in reply to B0ad1cea]

Hi Kathy, I haven’t had an appt for my scan yet! I will keep you posted on how I’m getting on and keep me posted on you too!Keep positive and strong, lots of love Lesley xx

[SASSY196]

Hi, I had my last carbo/ caelyx on 27/8. I have a scan on 17/9 and consultation on 22/9. My understanding is same as Sue 777 that if it worked then will access a parp ( England) but at midpoint scan my cancer was stable and had not shrunk. Oncologist said that it had to shrink to qualify for parp. Otherwise I am guessing it depends how things are looking more chemo or watch and wait. Hope your last chemo goes ok xxx

[Marie101]

Hi all,

I'm due to start carbo/caelyx next week as my cancer has returned after 5 months.

I have been told by my consultant that I won't lose my hair however the information sent says that with caelyx it's a possibility?

I used a cold cap with my last treatment and my hair only thinned a little. I would be grateful for your advice as my 11 year old gets really upset at the possibility of me losing my hair.

Thank you x

[Lesinbeds in reply to Marie101]

Hi there,

I have just finished 6 cycles of carbo/caelyx. I had the cold cap all the way through the treatment. I too was told that I might not loose my hair but I wanted to make sure I kept my hair.

It is such a big thing for me to keep my hair. Mine didn’t thin as much either this time so I would really recommend you have the cold cap.

Good luck with you treatment. I always here if you have any other questions as I know what you will bo going through.

Keep strong, you’ll be fine, we are a band of warriors, lots of love Lesley xx

[Saffery1 in reply to Marie101]

I just started this combination. My onc told me I would lose my hair (again!!) but the info sheet says 'may'. I asked on another forum and they all said their hair thinned or that the chemo had no effect. Fingers crossed .... x

[Lesinbeds in reply to Saffery1]

Good luck with the journey, I’ll keep my fingers crossed 🌸

[bluepeterella in reply to Marie101]

I had no hair loss on this combo - in fact my hair seemed particularly thick and curly. I had been contemplating using the cold cap too, as the chemo nurses insisted it would cause complete hair loss. So glad I didn’t!

[Marie101 in reply to bluepeterella]

Thank you for letting me know. I started yesterday and decided to still use the cold cap as I am too worried about losing my hair and I'm also trying to raise funds for another scalp cooling unit for the centre where I receive my treatment.

[Ocean89]

Hi there, I completed 6 rounds of carbo/calex and absolutely no hair loss... maybe slightly thinner but not noticible. I am no on it again as this is my 2nd recurrance and so far still have all my hair but if that changes, I'll let you know. ... Best of luck to you and stay positive

[Marie101 in reply to Ocean89]

Thank you for sharing your experience as well x

[bluepeterella]

I think it’s a bit of a postcode lottery and also depends on your brca status.

I was fortunate and had just started on a parp inhibitor a week or so before NICE announced it wouldn’t be funded for brca negative women after recurrence. It’s now much harder to access.

[OvacomeSupport Partner My Ovacome Team in reply to bluepeterella]

Dear Bluepeterella,

Thank you for sharing your experience. NICE is currently reviewing access to niraparib after a recurrence under the Cancer Drugs Fund. NICE recently announced their recommendation is that niraparib is to be available for treating relapsed, platinum-sensitive high-grade serous epithelial ovarian, fallopian tube or primary peritoneal cancer that has responded to the most recent course of platinum-based chemotherapy for those with a germline BRCA mutation.

This means those with relapsed, platinum-sensitive ovarian, fallopian tube and peritoneal cancer who are BRCA negative would not be able to access niraparib in future, though this decision has not been finalised. Niraparib is currently available at recurrence if appropriate, regardless of BRCA status.

If you are eligible for niraparib and your treatment has been impacted following this announcement, please contact Imogen at [e-mail]

Best wishes,

Laura Nott

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