ovarian

[Pianoanddisco]

Hi beautiful ladies,

This is my first recurrence and I am back on carbo / taxol and now I cannot tolerate the carbo after my 9th cycle so My oncologist will be switching me to cisplatin for next 3 more cycles. Has anyone been on this chemo drug? If so what side effects did u experience with cisplatin.

Thank you as always for sharing your experience .

[candyapplegrey]

Hi - sorry to hear about your recurrence. Have you had 9 infusions this time or 6 last time, 3 and 3 to go? Sorry - can no longer express myself. I cannot really help as have had not had cisplatin but I'm sure some people here have had it and will get back to you. What about taking a break from treatment?

You can search for cisplatin on this site and looks like there are others asking the same question.

Thinking about you. xx

[Pianoanddisco in reply to candyapplegrey]

Hi Candyapplegrey, thanks for your reply.

I had 7 chemo cycles when i was first diagnosed with stage 4b from March 2023 to Oct 2023 with carbo taxol and then recurrence happened July/Aug 2024 so I started with carbo taxol with Avastin (actually on a trial) by the end of Sept 2024. So far have done 3 cycles and I'm on my 4th cycle starting this Thursday but with taxol/cisplatin and Avastin. So really i've done 10 carboplatin/taxol so far.

On another note, my CA125 has gone down to 32 from 180 and my recent CT scan shows mostly clear except for a 6mm node near my pelvis. I'd love to take a break from treatment until I know more about this other drug however should i be worried about the 6mm node if i do take a break. Drs obviously would like me to finish the 3 more cycles that i have left.

[candyapplegrey in reply to Pianoanddisco]

Oh that's a lot of treatment. I had to take a break in my chemo and my team said it wouldn't make any difference but my chemo was more of a mop-up after the op when they thought they'd cut the cancer out.

Good luck with whatever you decide. Thinking of you. xx

[Katmal-UK]

Hi. I had a grade 3 anaphalactic shock on carbo on my first recurrence so had to swop to cisplatin. Basically I found it’s the same as carbo just harsher. I hope you do well. Kathy x

[Pianoanddisco in reply to Katmal-UK]

Hi Katmal-UK,

I appreciate your response, that's good to know. thank you for your kind words.

[Katmal-UK in reply to Pianoanddisco]

I prob should add I’ve had 2 recurrences, stage 3b HGS OC BRAC2, now in my 18th year, 11.5 years NED albeit on Olaparib, you can do this xx

[Pianoanddisco in reply to Katmal-UK]

Thanks Katmal-UK for your encouraging words, yes I got this! And wow congrats 18 years and 11.5 years NED. I'm so glad I found this site.

Thank you all you beautiful ladies God bless each and everyone of you!

[18Hilltop in reply to Katmal-UK]

Help Katmal, wow that is incredible and gives me hope. I am new to this site but not new to ovarian cancer. I too am on my second occurrence in 4 years and am terrified that options are running out. I had my first reoccurrence in Nov 22 and then my second reoccurrence was confirmed in Dec 24.

I too am BRC2 positive. With my first reoccurrence I had carbopaxel with Avastin and Olaparib (a parb prohibitor) unfortunately after almost 2 years of being on Olaparib it stopped working in Sep 24 as my CA125 started to go up. A scan in Dec confirmed there was regrowth in my abdomen. I have stage 3b and have started Gemcarbo. My dr has told me that I cannot have Avastin on the NHS again and if I want it I will have to pay! Can I ask what treatment you are or were on? My CA125 is 38 but whilst it is still relatively low and only just out of range I am so scared because before I had my first gemcarbo it was 31 and a week later after having chemo it had gone up to 38.

I would be So grateful to hear from you to know where you are being treated and what you are on for the second reoccurrence.

[Katmal-UK]

I was diagnosed 3b OC HGS BRAC2 in October 2007 and given 2 years. I had carbo/taxol and trialled Avastin. I had my first recurrence late May 2011 and was given 3 cycles of Carbo and gemcitabine but had a grade3 anaphalatic shock to the carbo and changed to cisplatin /gem for remaining 3 cycles. I then trialled Cedranib and had 2nd recurrence in June 2013. I then had 6 cycles cisplatin and started on a trial of Olaparib at full dose at the very beginning of 2014. The trial was SOLO2 where it’s taken until recurrence or no longer of benefit. I’m still on Olaparib. I’m treated at The Christie in Manchester having swopped from Clatterbridge in order to take part in the trial. I’ve remained NED with a CA125 of below 3. Since December 2023 we have been in convo as to whether I stop Olaparib as my onc believe I may be cured. Have you mentioned any trials with yr onc? You can look up what’s available on the Cancer Research website.

[win_56 in reply to Katmal-UK]

I cannot believe it's been 18 years since your diagnosis, and how well you have done Kat. You truly are an inspiration and give hope to us all! XX

[Katmal-UK in reply to win_56]

To be totally honest I can’t believe it’s been nEarly 18 years either when I look back. When you are told you have a ‘couple of years’ by 3 different people it crushes you but then you get a Consultant who says we are gonna fight this and not to listen to what others say it ignited something in me and I decided to try anything and everything. I got my first grandson about 16 months after my diagnosis, he’s 16 next month and he, along with 2 other grandchildren are such blessings who I know love me so much, so here’s to the next 18 years lol

[win_56 in reply to Katmal-UK]

Kat, you are so right you need a good consultant whom is going to fight for you and ensure you get the best treatment possible. Enjoy your life and every moment with all your grandchildren and yes here's to another 18 years disease free for you. x

[win_56]

Hi Pianoanddisco

I haven't been on this regime as of yet, but I just anted to wish you all the best going forward.

Keep strong

x

[Pianoanddisco in reply to win_56]

Thanks for your kind words win_56. I will keep strong and positive!