Third time UNlucky……..

[2mini2]

Third time UNlucky……..

Just been told today that my CA-125 is up again at 235. I have a consultant appointment next week but just wondered if any of you lovely ladies had any words of wisdom for third line treatment? What did you have and have you managed a period of remission after third line treatment?

Bit of back ground for you

Age 40

Diagnosed May 2016 (Peritoneal) - Carboplatin and Taxol June-Nov 16 with full debulking in the middle of the chemo.

1st recurrence May 2017 and treated with caelyx and carboplatin June-Nov 17

Can’t lie – im scared……… Its come back so quickly this time………..

[Katmal-UK]

Hiya Recurrence is always so scary. After my first recurrence I had a short remission, probably no longer than abut 14 months. Now this time round after the second recurrence I am enjoying my longest remission to day (just under 4 years 6 months), albeit I am on a trial for Olaparib. You might want to ask about a trial? So you see from what I have said a remission is possible and in fact a longer remission is possible. Sending you a hug. Kathy xx

[sunnykatz in reply to Katmal-UK]

Hi. I was diagnosed with ovarian cancer stage 3 with fluid that needed to be drained and cancer cell in lining of tummy. Don’t know the technical terms. I’m 48 and was diagnosed in 2015. Went through chemo than surgery all female organs debulking. Than chemo. 9 months later it came back and more chemo I believe it was doxil. Went into remission and was put on Avastin. 6 months later it came back. Put back on chemo + Avastin it went up down and back up. I have the braca gene so my doctor put me on lynparz the pill. Unfortunately for me I’ve been very sick and tired it’s been rough. But for most people they say it’s not that bad and after 2 months symptoms reside. I too am very concerned about the cancer coming back so soon and as many times as it has. I wanted to ask you about your quality of life on lynparz also know as olaparib. I’m almost at the point where I want to stop everything because I’m constantly I’ll. Any thoughts or encouragement on this

[Katmal-UK in reply to sunnykatz]

Hi I would say stick with it if you can. I have a very good quality of life ad to be honest people are amazed at my stamina. , I work full time, yes I get tired, dizzy and have issues with bowels but to be honest those could be age related!, well I know the dizziness isn't as that is related to the Olaparib as my BP drops like a stone when I stand. Have you asked about lowering the doseage? What dosage are you currently on? xx Kathy xx

[sunnykatz in reply to Katmal-UK]

I don’t take the capsules I take the pill and they take 300 in the morning and 300 at night so 600 mg all together It’s only been 2 weeks. Was it difficult for you at first and than get better

[Katmal-UK in reply to sunnykatz]

Hi That's the same dose as I take in pill form. Thinking back (and it was 4 years ago) I would have to say yes it took a while to settle down, the nausea and tiredness. The dizziness to be honest is worse some days than others, not sure why. The bowel 'issues' pretty much depends on what I eat tbh. I tend to know what triggers an episode and am better at understanding when I need to be near toilets.

[sunnykatz in reply to Katmal-UK]

Thank you so much. It’s been so difficult it’s great to hear your doing so well

[Katmal-UK in reply to sunnykatz]

Hi I agree it is difficult, very difficult sometimes, especially when it feels like you are always feeling unwell. I nearly gave up chemo and was going to let 'nature' takes it's course as I had a grade 3 anaphalactic shock from Carbo and had to move to cisplatin which is tougher. I stuck with it (goodness knows how) and I am now enjoying another good remission. All I can say is that hopefully things will improve for you, it all takes time to regain strength etc. Big hug. Kathy xx

[sunnykatz in reply to Katmal-UK]

Thank you again ❤️ I’ve been really considering letting nature take it’s course ❤️ I suppose when in 2 more weeks when I see my oncologist and see if the lynparz is working I will stick with it❌⭕️❌⭕️

[Hidden in reply to Katmal-UK]

Hi Karmal, I understand your disappointment and unfortunately lots of us are on the same road. I got three years remission after Carbo/Taxol and next time in 2010 I took Carboplatin/Gemsar found that difficult and followed on directly, with Caelyx alone. Was very ill at the time and decided no more. I did the usual dietary things juicing and deleting sugar after that to get back to normal again but in 2015 I had one lymph node removed and decided to wait and be monitored for a while and rated NED otherwise. Again in 2016 I had another independent low grade cyst removed and ratec NED but in January 2018 Ithere was evidence of my CA125 being very slightly elevated and CT scan showed evidence of a few lymph nodes being implicated and I opted for chemo this time. Just this week I commenced 6 sessions of Carbo/Taxol as it is 11 years since I last took it and I did not find the regime difficult. I suppose what I have learned over the years we are fearful initially but as time goes on you relax and take time to make the decision that is right for you. Talk with your Onchologist and he she will give you time and good options to get you back to good health again. This disease can be chronic and there are times we need treatment and times we will be NED. Good luck on the journey. Una

[Katmal-UK in reply to Hidden]

Hi Una

I think your reply was meant for 2mini2?

[Hidden in reply to Katmal-UK]

Karma, yes I noted that and tried to resend it her but was unable perhaps you would advise her please. Good luck with everything

[Beckyjh]

I’ve just recurred again only 8 months after second line. After my first line chemo in 2015/16 I was NED for 14 months so this was somehow more of a shock so I know exactly how you are feeling. I seem to have followed the same regime as you as I started on carbo/taxol, then had carbo/caelyx last time. I’m now on carbo/gem which lots of ladies on here have found the most tolerable but I’ve got to be honest i’ve Just finished my first round and I’m finding it tough - constant nausea which I can’t get rid of and no appetite at all. I do wonder if it’s because I have gone into a bit of decline this time- like you, can’t get it out of my head that it has come back so quickly. But - I have already noticed that my fluid filled abdomen has gone down already and it looks like my liver is starting to function agai so something good must be happening. My oncologist keeps reassuring me that we are nowhere near out of options and as well as more chemo options he is constantly looking out for trials for me.

I’m trying not to beat myself up for being so miserable so be kind to yourself, it’s natural to be scared especially as you don’t know exactly what your plan is going to be.

Sending you a big hug

Becky xxx

[Lily-Anne]

I used to think double figures were a complete travesty. Now Im happy if it doesn’t do big jumps. CA125 has always been reflective of movement but not mass for me. Mine was 281 down from 297 but have now decided I don’t actually want to know. Ostrich moment lol

Do you want more chemo if it’s all those side effects for little reward?

Hard decision wishing you luck and positivity

LA xx