Possible treatment options

[Riverflo]

Just come from a meeting with my oncologist. I was feeling healthy so it was a blow to hear that there are enlarged ganglia behind the bowel and a raised CA125.

I had 9 treatment-free months after first round of chemo and surgery. Now the options are:

4-6 chemos then Niraparib if I respond well

Or

surgery and chemo but no maintenance drug.

The Onc said they have similar outcomes. Any thoughts or advice would be greatly appreciated.

Thanks, Martine xxx

[Irisisme]

Hi Riverflo,

I’m just wondering why no maintenance after the surgery/chemo option. Is that a funding issue? Of course you may have no evidence of disease after surgery. That sounds a great outcome. Just check you have a really experienced surgeon.

I’m not sure chemo would have the same possibility but I’m not familiar with Niraparib, I believe it has its own set of side-effects.

I’d go for surgery but there are risks to that. You could do a list of pros and cons for each option - and then see which one feels right for you.

I hope this helps.

Iris🤗

[Riverflo in reply to Irisisme]

Hi Iris,Thanks so much for your reply. I am in Spain. the funding here is: Avastin after one round of chemo (couldn't have it because I had a fistula) and Niraparib after 2 rounds of chemo if you respond well.

BUT, if you have surgery before chemo, it doesn't count because the surgery cleared the cancer, not the chemo.

So yes, I think you are right, the surgery is probably the better option. I am waiting to see what the surgeon says.

Thanks. Martine xx

[SASSY196 in reply to Riverflo]

So the argument is that the surgery clears the cancer and chemo is a mop up versus chemo clears the cancer with parp acting as maintenance.It's a hard choice for you- first line I had chemo/ surgery/ chemo Avastin, achieved Ned but recurrence after 8 month's ( whilst on Avastin) My friend who was inoperable ( we are both 3c) had chemo and on parp and has stable disease with parp doing its job. So at the moment even though I achieved NED and she didn't, she seems to be doing better and is more stable than I have been to date ( I'm hoping chemo will work and I can access a parp).

I guess the surgery will have an easier prognosis for surgeon to make as they can probably better predict the outcome of surgery than the efficacy of chemo/ parp can be predicted.

So I suppose I would want to know wether surgeon is confident that they can remove cancer, what efficacy of chemo/ parp is based on any knowledge of your genetic profile, risks/ recovery/ side effects and quality of life that is expected with each option and also whether by following either treatment option if that 'uses up' that resource for future treatment, eg are you allowed parp as 3 rd line treatment if you have had it for second line? Or have you used up your ration of it?

Anyway really hope you come to a decision you are confident in and wishing you all the very best , Sara xxx

[Riverflo in reply to SASSY196]

Hi Sara,Thank you so much, the experiences of you and your friend and the questions to consider are so helpful because this is new territory for me and still feels raw because I was feeling healthy and didn't expect the meeting to go like that!

I am high grade 4 serous. Yes, it's a good question to raise about "using up" resources because he said the surgery option was better because we would still have the "parp card available to us" but I was still reeling and didn't follow it up. Luckily we are meeting again next week.

And yes, as for you, in the non-surgery option, the parp is only available following a good response.

It's a real minefield and tough decisions to make. Like when I couldn't have access to Avastin, in some ways I was frustrated but also a bit relieved because I would have some treatment-free time.

It was such a lifeline when a friend recently told me about this forum and I can hear from people like you with similar experiences because in Spain, the medical care is good but there is no team, nurse etc, you just have oncologist meetings and I don't really get to talk to other people with cancer.

So thank you for sharing and I hope your chemo works well and becomes a distant memory soon.

Martine xxx

[SASSY196]

I had same question as Iris, why does having surgery mean that you can't get Parp?

[Riverflo in reply to SASSY196]

The chemo had to be shown to clear the cancer, not the surgery. I suppose it's all about the money. xx

[Irisisme]

Ah Martine, it sounds very complicated and arbitrary as to whether they judge that the chemo played an active role or not. Yes, whether in Spain or UK, there are still financial restrictions.

Please do check how experienced your surgeon is if you do go for surgery. If the bowel is involved it may need a more specialist surgeon.

Do let us know what you decide,

Luck and Hugs,

Iris 🍀🤗🍀🤗

[Riverflo in reply to Irisisme]

Thanks Iris. Do you think you can research the surgeons on line or just question the oncologist about the surgeon's experience? xx

[delia2]

Hi. I agree that surgery is the better option if it’s doable. The surgeon won’t agree to it unless she/he thinks it can be completely removed. The trouble with PARPs is they’re a miracle when they work but sometimes they don’t work at all. Can you be tested to see if you are HRD (have homologous recombination deficiency). About half of hgs OC people do and that makes it likely the PARP will work. Good luck!! Xx

[Riverflo in reply to delia2]

Hi Delia,Thanks so much for your advice. I have no experience of parps so it's really helpful. Sorry, just to check I understand correctly, if you are HRD (ie have a deficiency) the parp is more likely to work.

And the oncologist could organise that test?

Best wishes,

Martine xxx

[delia2]

Hi. Yes. The oncologist should order the test of the tumor. The mutations that everyone knows about, BRCA 1and 2, are just two of several that disrupt DNA repair. PARP inhibitors also disrupt DNA repair and being homologous repair deficient allows the PARP to stop the cancer’s DNA repair and then the cancer cells die.

[Riverflo in reply to delia2]

Thanks so much Delia, I didn't know about that but I will certainly ask the oncologist if he can do it as it could affect the treatment decision. So much to learn! I am really grateful. Martine xxx