Hello, in summary I was diagnosed 2 years ago, 2b HGS, usual surgery then chemo. My ca 125 @ diagnosis was 75. Well since but ca 125 starts slowly creeping. Last CT july 2020 clear. Usual and fab onc on sick leave, temp guy advised raise likely due to me having covid... then likely due to pfizer jabs, wouldn’t be concerned unless it doubled.... it doubled on last test to 64. ( last month). Pains in rt side, USS no abnormality , just had news today CT shows small nodule recurrence in peritoneal area, liver capsule and diaphragm. Bugger!
Onc suggests either tamoxifen ( which i have seen used in breast cancer often but not ovarian?) and scan in 3 months or chemo of carbo/ caelyx. My choice. They may aswell be asking me what way I would drive to the moon😂. Also possibly then a Parp if chemo works.
So has anyone had this chemo, is is doable ( I was really ill on carbo/ taxol) , anyone just had tamoxifen with decent results? Apparently surgery not option as small nodules but in very difficult to reach position. I am 55, just retired and fit. Boat load of trips/ holidays/ nice life booked...No other health issues.
I am pleased I summarised!
Thank you for any thoughts, advice or personal experiences. Xxx
Really very sorry to read this Laz. You must be devastated to say the least. I feel so much empathy. My last CT scan was pretty similar. I had Carbo/Caelyx in 2020. I had side effects but it did bring my CA 125 down to 9 from 75 and shrunk my tumours by 2/3rds. Long story shortened- Taxol next but stopped working and my tumours spread to my liver. Told inoperable. Now back on single Carboplatin. There are surgeons who will operate on liver metastasis at some of the big cancer hospitals. Your oncologist will help you to get a referral or second opinion. Don’t know anything about Tamoxifen but I believe Letrozole is a similar drug. I would go for chemotherapy every time where possible. Parps didn’t work for me. Given the chance I would accept Letrozole as a maintenance drug if possible.
I wish you all the very best and hope you find the right treatment for your current situation. You’re very, very young and should search all options ASAP.
Love from Angela x
PS my oncologist has told me chemotherapy goes through every part of your body and could shrink the liver tumours. Good luck xx
Can i please ask how you are doing on just Carboplatin?
Hi Weemary. I’ve only had 2 infusions up to now therefore not had a CT scan. It’s due after 3 months. Up to now I’ve not had any drastic side effects just the usual nausea 4/5 days after, which cleared up after 3 days, and toilet problems from day 1. If you wish to follow me I will let you the ladies know after the scan 🤞Are you on Carboplatin? If so all the best it’s an excellent chemotherapy.
Love from
Angela xx
Thank you for your reply.I am starting this on 14th May.
Yes it would be great to hear how you are doing.......hope the rest goes well for you. xx
You’re welcome Angela x
Thank you Angela. Am leaning towards the chemo . Would you mind telling me the side effects you had from carbo/ caelyx combo? I think my onc has already discussed this with liver onc but will check. I quietly follow your posts xxx
Hello again Laz, I’m glad you follow me. I think I follow you too now. Carbo/Caelyx side effects. Ulcerated mouth for which used mouthwash, flavoured ice cubes and lots of ice lollies. constantly. Skin peeling on my hands(I don’t have any finger prints now) and balls of my feet. Slight thinning of my hair. I hadn’t had Caelyx reduced to 70% which really helped and as I mentioned before the tumours shrunk by 2/3rds.
All the best
Love Angela x