Any thoughts?

[Lynn2012]

Hi - I was diagnosed in Jan 2012 HGSOC stage 3C. I’ve had a lot of chemo lines and two surgeries but had very good quality of life over the years. (Details of treatment in profile.) I am currently almost through weekly paclitaxel but numbers rising and scan showed slight progression.

Seeing oncologist next week to decide between oral cyclophosamide, rechallenging with Carbo Caelyx ( recurred 6months after Carbo so declared platinum resistant, but that was 20 months ago), or Cisplatin and Etoposide (aka the Rotterdam Regime). Am researching but would love to hear from anyone with experience of any of these - particularly the rechallenging with Carbo. I’m hoping my oncologist will have thoughts too - as I do not know enough to decide.

I live a long way from London so trial possibilities are limited and investigations so far have found nothing. Went to Royal Marsden about trials last summer but nothing suitable. Am on COC (Care Oncology Clinic) protocol of repurposed drugs but hard to know if has helped.

Any information or thoughts welcome! Many thanks and best wishes to all! Lynn xx

[Hidden]

I recurred after 6 months my oncologist was happy to try carbo again which I had with caelyx. Side effects were minimal the worst being fatigue and digestive issues. I have just finished 6 cycles and awaiting CT scan and blood results, feeling good. x

[Lynn2012 in reply to Hidden]

That’s good to know - hope your scan and bloods are ok. Thanks Lyn! xx

[Ge0rg1na]

Hi Lynn

I can relate to your story as we have been on similar journeys, as you can read in my profile (which I must update after I've seen my onc next week.) I live 100 miles from London but had no problem commuting to UCHL hospital on a weekly basis for two trials. These trials obviously didn't cure anything but they did give me more time. If you live north of London I can't recommend the UCHL highly enough. The care I got from the trial team was very good and they have similar trials to the Royal Marsden. I am back at Addenbrooke's in Cambridge and they are not big supporters of the Rotterdam regime at all after it was trailed there some years back. I think it's important to attend a centre of excellence hospital because their oncologists are at the top of their game.

Carboplatin is the gamble I'm about to take because if it doesn't do any good, I'll go back to paclitaxol despite the neuropathy it leaves me with.

Good luck Gina x

[Lynn2012 in reply to Ge0rg1na]

Thanks for your reply Gina - yes, I think we are on similar journeys...not easy but at least we are still here!

I live in Cornwall, 5 hours on train to London, so treatment at any of the top specialist hospitals is difficult. I did go to the Marsden for a second opinion last summer about future treatments and trials which was helpful though no trials available at that point.

Wishing you all the best with the Carboplatin - how soon are you hoping to start on that?

Lynn x

[Nicky100 in reply to Lynn2012]

Lynn, if you want second opinions. I travel from Devon to London to see the team at Queen Charlotte’s / Hammersmith.

They are an amazing team with exceptional care.

Let me know how you get on xx

[Ge0rg1na in reply to Lynn2012]

Yes 5 hours would be too much, I can see that. It's such a postcode lottery, this wretched disease. I had hoped to start treatment this week but when I spoke to the chemo suite today they said I was just on the wait-list, so I'm not so sure.

Hope you are better informed after these comments and make sure you have someone with you when you see the oncologist to take notes of their suggestions. Good luck! Gina x

[Lynn2012 in reply to Ge0rg1na]

Thanks Gina - yes my daughter ones with me and is very good at asking questions! Hope your chemo starts this week - the waiting is stressful!

Lynn x

[Ge0rg1na in reply to Lynn2012]

Yes, I thought you'd have that organised. My chemo won't now happen until Mon as their lists were fully booked. I'm trying not to get angry as I reckon negative thoughts do you no good. Luckily I'm a mild natured and a cup half full sort of person so that helps. All the best and let us know how you get on.

[Lynn2012 in reply to Ge0rg1na]

Oh that’s annoying that you have to wait till Monday - I always want to just get on with things. All the best for next Monday...xx

[Shorty864 in reply to Lynn2012]

I also come from Cornwall Lynn and have been trying to get on a trial and wondering if I would be strong enough to make a long journey as all the trials are so far away from us.

I am doing the COC protocol but like you not sure if it is making any difference.

Also have had carbo the second time round but it did not make much of a difference. Am now on Caelyx and Avastin and am stable, but need to come off Caelyx as suffering from terrible fatigue.

All the best my dear and keep us informed.

Off to see Doc today, a bit worried what he is going to say.

A big hug. Anne xx

[Lynn2012 in reply to Shorty864]

Hi Anne - thanks for your reply. Yes it is a long tiring trip from Cornwall to any of the main trial centres.

Which part of Cornwall are you In? I am in Truro - I assume you go to Treliske? I hope your appointment goes well today and they come up with a replacement for the Caelyx - let us know how you get on!

Take care! Lynn xx

[Shorty864 in reply to Lynn2012]

I live in Tywardreath and so the only good thing is at least we our about 5 minutes from Par station, but when your not feeling your best - 4 to 5 hours is a very long time. Yes off to Trelisk in a while and the weather couldn't be any worse!!

Well I don't mind being on only the Avastin as long as it keeps working, but would like to have a little plan for the future if possible!!

I see you have been struggling since 2012 my dear - me since 2013. I suppose we are lucky to be still here, but sometimes it is very hard. Let me know if you hear of a trial and I will do likewise - I believe our cancer is similar.

Take care yourself. Anne XXX

[Lynn2012 in reply to Shorty864]

I was on Avastin and Carbo taxol, then the Avastin alone for a further 3.5 years. Hope it keeps working for you too!

Eight years now in January since I was diagnosed - quite a few ups and downs along the way! But also generally good quality of life.

My son finished uni, living and working abroad after a rather chaotic few years so that’s a relief. Seen my daughter engaged, then married, now has two little boys and nearly qualified as a GP. So proud of them both and glad I’m here to enjoy it all with them.

Hope this afternoon goes well..xx

[Nicky100]

Hi Lynn

I’m so sorry but I don’t have experience if the suggested routines you’ve been recommended.

It sounds like you’ve got good contacts at hospitals though and you are looking outside the box.

I know it’s so hard when you are looking at the best options, especially when you feel fragile.

Please do stay in touch and hopefully someone can help.

Love Nicky xx

[Lynn2012 in reply to Nicky100]

Thanks Nicky - it’s really hard trying to decide between treatments but hoping my oncologist will have an opinion on Thursday - will see what she has to say. xx

[jools53]

Good luck had my fourth line of chemo treatment yesterday! Caelyx only🙏 Got some options of trials on back burner etc ca high so hoping this might do the trick! Zejula parf for me made more progression in my mind so stopped that! Had avastin for 14 mths a nice break! But throat sinus and bp issues! All back to normal see what happens next! Always falls on or near my birthday and ends on sons 😂😘😘