Recurrence advice

[N-A-58]

Hi Ladies.

I’m hoping to get some advice from you please. My mum was diagnosed with stage 3A in Jan 2019. She was clear and then diagnosed with her first recurrence in Feb 2022. Since then she has done 4 carbo and caelyx and her ca125 was gone 358, 92, 30 and now 22. We are waiting for her last one since chemo number 4.

She has really suffered with this treatment. The symptoms have been relentless with no respite between chemos. Nausea, fatigue, mouth alcers and breathlessness to name a few.

The onc has suggested today, based on her bloods after chemo 4 to leave it all together as it appears to have done it’s job and my mums blood numbers have basically tanked causing issues with anemia etc.

I know that the research doesn’t say 6 is better than 4 but i just feel a little uneasy about it all.

I don’t think we have a say in whether she has the next 2, I think it’s a done deal with only having the 4 but i wondered if anyone had only had 4 cycles? Should I push for a further 2 to ensure a better outcome?

There’s also the question of the parb. Am I correct in thinking it absolutely must be started within 8 weeks of finishing chemo?

We have the option of which one we choose. The onc said they were much for muchness but did refer one over the other due to the twice daily dosage. Any opinions from those taking them? I know it’s all individual reactions etc but would be great to hear from you how you are tolerating it.

Thanks in advance for any advice you can provide.

[Trickysite]

I don’t know the answers but suggest you talk to Ovacome And Macmillan. You could also ask fir a second opinion, to which you are entitled under NHS. Maybe you need a specialist hospital like Marsden or Christie’s fir that. Wishing you and your mum all the very best,Emma

[N-A-58 in reply to Trickysite]

Thank you Emma. I will give them a call. It’s hard to know whether to have 4 or 6. Take care.

[bamboo89]

If your mum is being offered a PARP, that's even more reason to stop at 4 chemo treatments. Chemo is toxic to the body generally, it doesn't just attack the cancer, so if your mother's bloods are showing very poor results and she's feeling really poorly, its a good idea to stop after 4, especially as her CA125 is now well within normal range. In various European countries, the standard course of chemo is only 4 anyway; when I queried with my Oncologist why we do 6 in the UK, he said it was because that's what they decided on when chemo was first used, and no trials have been conducted to see if 4 would do just as well, so they just kind of stick to it, if they can. Often women end up having 4 or 5 anyway simply because of side effects, in reality.

Regarding PARPS, yes, its usual to start within 8 weeks of finishing chemo, although I had delays and didn't actually start till 11 weeks afterwards. I have taken Niraparib, and although it actually lowered my CA125, I had to stop within 4 months because it pushed my blood pressure and heart rate up past an acceptable point, and we could not find a drug that I could take (due to other health problems) that would offset that. Although niraparib is known to increase blood pressure, my reaction to it was more extreme than most women have, unfortunately. I think Rucaparib is the newest one, but obviously I haven't tried that.

Miriam

[N-A-58 in reply to bamboo89]

Wow Miriam, thank you so much for your reply. It’s so helpful! Sorry to hear that Niraparib caused those problems for you. It’s good to hear how it can and does affects individuals and something for us to bear in mind.

I hope you are keeping as well as can be.

Thank you again!

[delia2]

Hi. I agree with Miriam that the PARP might be preferable to more chemo. I don’t think they’re all the same with regard to side effects. They all can cause fatigue and in the beginning nausea. I think Niraparib is harsher on blood counts but Olaparib can cause anemia. Olaparib seems to be usually given to those with a BRCA mutation. Remember that they can reduce the dose if side effects are too much.

[N-A-58 in reply to delia2]

Thank you for your advice! My mum is brca negative so something for us to keep in mind. The oncologist has said we can pick which one which is great but also scary!

[Smileeveryday2021]

I am Brca neg. I also had problems with bloods..neutrifils, so was given Rucaparib. I was told Rucaparib is gentler on the bone marrow. My bloods on Rucaparib are normal. I have not had any side effects either…

[N-A-58 in reply to Smileeveryday2021]

Thank you for your reply! That’s good to know and good news that you’re not getting any of the side effects. Long May it continue!

[Rosewall101]

You’ve had great advice here. I stopped a Gem/Cis chemo after 5 rounds as I wanted to go on holiday. It sounds flippant on paper but my CA125 had gone down well and my bloods were all over the places. I needed a transfusion - platelets I think . Anyway my oncologist conversations went along similar lines. Why 6 doses etc? My take afterwards that it was protocol but the first 4 were the critical ones. It sounds like your mum needs to rest and recuperate. Going a parp is brilliant. I was given olaparib as I’m brca 1&2 positive. It didn’t work for me but parp inhibitors and immunotherapy are brilliant and they often give a reasonable and lengthy break from toxic chemo. Definitely get advice on the best parp for your mum and good luck. Rosie x

[N-A-58 in reply to Rosewall101]

Yes it’s the same for my mum. Her bloods are down to 14 after 4 chemos which is great. Thank you Rosie for your advice! Hope you’re keeping as well as you can!

[N-A-58]

Thank you to the 5 people, from this entire forum, who replied with words of encouragement and advice to my post! Very much appreciated! Cancer is just awful and I’m so grateful you took the time to help me!