Anyone had chemo without surgery?

[PlantPower]

Hi, everyone,

I am new on here. I was diagnosed with high grade ovarian cancer one year ago. I have had one line of chemo of Paclitaxil and Carboplatin to which I responded fairly well. My CA 125 at diagnosis was just under 20,000 and went down to 88 post chemo. I must stress that I was unable to have surgery as I have a blood clotting condition. Post chemo I was prescribed Niraparib but my CA 125 has continued to rise since chemo finished and is now 900. I have a CT booked for later today and see the oncologist next week.

I would like to know if there are any of you lovely ladies who were not able to have surgery and how you are doing/coping. I am trying to remain positive.

xxxxx

[Tulips66]

I cant help you as I had surgery & then chemo but I just wanted to wish you well & hopefully you will get the answer to your question about your rising Ca 125 when you get your Ct scan results. Hopefully you wont have to wait too long for them X

[PlantPower in reply to Tulips66]

Thank you so much for your reply and well wishes. I extend my very best to you for your continued good progress. xxxx

[Lirene]

Hi, I was diagnosed with HGSOC, stage 4 in December 2019. Unfortunately my Oncologist advised it was too widespread for surgery, and unfortunately my CA 125 is not a reliable marker. I had one cycle of chemotherapy, then one cycle of Avastin, cancer came back and I had another cycle of chemotherapy, Lost my hair twice, also eyebrows and eyelashes Since then I had a laparoscopy as my tumour had shrunk and my Surgeon wanted to assess the extent of the cancer for possible removal. However, and whilst under anaesthetic, I had severe problems and have been told no more operations. I was prescribed Niparib 200mg and after three weeks, I experienced severe bruising, I also had low platelets, down to 13, which resulted in three platelet infusions. Also low white blood count, low red blood count and anemia. Throughout this the NHS, including oncology, triage oncology, both of my Oncologist’s and District nurses were absolutely wonderful. I am now on Niparib 100mg. Three weeks in, I am absolutely fine. Weekly blood tests are okay so onward we go. Good luck with your treatment, researchers are finding new discoveries, we have new drugs Parps, Immunotherapy, new procedures etc and pray for a breakthrough for Ovarian Cancer very soon. Never give up, there is always hope and something else to try. I just get on with it and make sure to live as normal a life as possible. Women diagnosed with Ovarian Cancer are living with it for years now. Bless you xx

[Bette53 in reply to Lirene]

very positive message,reading this post gave me hope, I am just going through the process of a second chemo, for recurrence, so just hooe

[PlantPower in reply to Bette53]

I wish you the very best for your next chemo. Are you going to have the same as your first line chemo? So much encouragement on this board and good to hear personal experiences as many give so much hope and support.xxxxx

[PlantPower in reply to Lirene]

Bless your heart, Lirene. You really have gone through the mill, haven't you! Despite all, you say you are well and that gives me hope. Thank you so much for the reply. I am really well at the moment, chemo for me was like elixir of life as my huge volume ascites disappeared virtually overnight as well as the pleural effusion in my left lung. But my CA 125 has never been stable and is rising despite being on Niraparib for 3 months. I very much hope you continue to remain well and that I can be as positive as you! xxxxxxxxxxxxxxxxx

[delia2]

Hi. I haven’t been in your situation but I have seen others who have done well without surgery. I’m wondering why you weren’t put on a PARP? I also want to send you positive thoughts.

[PlantPower in reply to delia2]

Thank you for telling me that. I feel out on a limb as it seemed I am the only one who has not had surgery. I am on a PARP inhibitor which is Niraparib. I have taken this for 3 months since my first line chemo ended. My CA 125 has continued to rise since then but my CT check I had in Dec 2022 actually showed further reduction of the tumour size and less enlarged nodes since my end of chemo check in Oct 2022. Go figure! Got my CT again last evening and oncologist appt next Tuesday. Best wishes to you Delia. xxxx

[delia2 in reply to PlantPower]

good luck with CT results!

[PlantPower in reply to delia2]

Thank you xx

[Amerthist]

Hi, I had carbo/ taxol weekly for 18 weeks in August 2017. I didn't have any surgery due to the cancer having so many nodules spread all over in addition to the main tumour. The surgeon didn't think he could remove them all .I was diagnosed with carsinosarcoma stage 3c,which is a fairly rare form of ovarian cancer. I

I was very lucky the chemo was very successful in reducing the tumour a d nodules. Since then I have had a scan every 3 months until this year and now it's 6 monthly.

I have kept reasonably well throughout . I am told that the condition is stable.

I know the situation can change at any time but I don't worry about it , I just try to enjoy the present.

I hope you get your results quickly and they work out a good treatment plan for you.

Best wishes

Anne

[PlantPower in reply to Amerthist]

Yes, that is a rare cancer and you have done so well! Mine is high grade and I had gross secondary spread throughout the pelvis and abdomen and into lung with huge volume ascites. You give me hope that I can continue for some time yet when I thought all options were lost. I wish you a long continuation of feeling and doing well. Thank you for taking the time to reply. Best wishes, xxxxx