Recurrence

[Carpag]

I have been on watch and wait since August last year with CA125 swinging up and down. Now I have symptoms and blood tumour marker is over 500. I also have fluid in pelvis and around my liver. The hospital are offering to start chemo next week. Carbo/taxol as first time around. I would like to get some more advice but it all takes time and I am anxious for the chemo to go ahead asap. Does a week or so make much difference. Also will the fluid go away if the chemo is successful ? I had also asked to be referred to the RM but the hospital dragged their feet and although the request was made 3 weeks ago the referral has only just been made. The criteria for the trial is that you haven't had chemo in the last 4 weeks so to go ahead next week would make me ineligible. I have so many questions and no one to ask. Can anyone help ?

[Lyndy]

Hello

I am contemplating a possible ( unconfirmed) recurrence and had been thinking I would ring the Ovacome helpline to talk through my options if it proves to be the cancer coming back. I would like to consider trials and make sure that surgery isn’t an option but it would all take time. The helpline is nurse led and I’ve always felt so reassured and well informed by them. Perhaps this might be a way forward for you? Sending hugs...this is hard xx

[Lily-Anne]

You could ask the secretary of the consultant you have been referred to ask them for some advice. This may speed things up. I was told delaying chemo for a couple of weeks makes no difference so I booked a holiday before I started mine last year

Good luck

LA xx

[Purple-iris]

Hi

Can understand why you are feeling anxious especially if you have been on watch and wait since August . As far as getting advice as to your options it may be a good idea to discuss with the Ovacome helpline .

The chemo normally sorts the ascities with time . As far as delaying your chemo to investigate the trial that is really a question for your team as to how quickly they think you should start and how bad your symptoms are .

Do you have the info about the trial ? Or a contact at the RM that you can talk to and explain you need an urgent appointment. Or can your CNS help speed things up so you know your options ?

Hope you get some answers so you can choose what treatment plan to follow .

Love and best wishes Kim x

[ssjmichael]

I'm sorry to hear about the recurrence. My mom may likely have one too, as her marker jumped to over 1,000 suddenly.

Usually surgery isn't performed for 2nd line as the recurrence is often very small, and often scattered in different places, rather than a large tumor, which is usually the case with first diagnosis.

I hope Carbo/Taxol is offered for my mom, as she tolerated it well and I believe it's a great combination. Of course if it doesn't, or if there's adverse effects something like Doxil (Caelyx) could work too.

Regarding the fluid, Taxol can definitely dry that up. Another thing useful for that is Avastin. Is this an option?

And as far how fast the cancer can grow, I think everyone is different, but a week or two or even longer may not make any difference. Also keep in mind that chemo works even better if the cancer is a little bit more active than a very slow cancer, so the chemo will hopefully knock it down.

[Hidden]

I think I agree with the other ladies ring the Ovacome helpline but also check to see if your referral can be fastracked to RM. A few weeks of waiting shouldn't make a huge difference to your treatment

[Hidden]

You didn’t mention genetic testing or your BRCA status.

While waiting, you might inquire about BRCA testing as BRCA Positive positive patients are being considered for different treatment for better results. The test results can take a week or longer, so if you are eligible, sooner is better than later.

Also, some trials want to know BRCA status of the patients, as the BTCA mutations are linked to only specific types of the 60 different Ovarian cancers.

[Naimish]

I would reckon that delaying chemo can be answered best by the oncologist since it also depends on the grade...... as different from the stage. What say Joan?

Naimish

[Nicky100]

I was told that chemo was my only option with mine recurred 11 months ago. Surgery was not indicated. But I was determined to find the best treatment option I could and went to The LOC in London for a second opinion.

Their advice was worth the weight in gold. They advised surgery before chemo and the most up to date research that week from a conference showed that for rumours, surgery gives you a much better outcome. I don’t know about fluid however or scattered grains etc.

They are worth talking to and email me if you want any more advice. Or push the consultant you have already approached to see you. Call their secretary etc. You have to be strong and really ask for what you need.

Lots of love. I know how scary a time this is for you. But you can get through it and we are all here for you.

Nicky xx

[Carpag in reply to Nicky100]

Thanks so much Nicky for your advice. I have made an appt for Monday to see the Dr at LOC. Hopefully he will make my way clearer. X x

[Nicky100 in reply to Carpag]

Do drop me a line to let me know how it goes. Good luck and I hope it brings something xx

[Carpag in reply to Nicky100]

Hi Nicky I am in the waiting room at the Clinic right now. I will let you know how I get on

[Jessica-DianeB]

Good luck, I've been through this recently and found RM very quick, even giving me trial details and consenting on the 1st visit. Unfortunately I wasn't eligible due to my tissue pathology and it was suggested as symptoms were increasing ( along with markers ) to come back home for standard Caeylex. The time between confirmed recurrence and treatment was around 4-5 weeks. With the trips back and 4th to London. It's do able, but I'm in agreement you need to be as pro active as possible in following up. Including any medical notes your chosen referral hospital may require. Keep chasing.

I really wish you good luck, don't jump in to soon if you are managing your symptoms. The long term picture was in my mind, what if I started this, would that make me in eligible for that etc. Note pad at the ready and calm, come on for advice, call overcome and remember that even when you are investigating trial elsewhere you can still pre empt the standard treatment offered locally, so there's no delay should the 2nd opinion not throw up any alternative options xx

[Carpag in reply to Jessica-DianeB]

Thanks so much Jessie. It is so good to hear from someone who has been through the same situation. The RM is quite close to where I live so to have treatment there would be preferable to the journey I have to Guildford. I now have an appt for Mon at the LOC and will then need to make a decision as to what path I take. Many thanks for your advice. It really helps x x