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
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Laz66
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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
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.
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.
So sorry to hear your news, I was initially diagnosed in 2015 at age 48 and like you had surgery and carboplatin and taxol, had a recurrence in 2017 similar to yourself with a few nodes , I had surgery at that time but encountered quite a few complications as well as a nasty DVT but had carboplatin/gemcytabine chemo which was slightly more tolerable , now I'm on letrozole as maintenance and thankfully I'm well , my ca125 was never very raised, about 144 at diagnosis and has been relatively normal since. I also have seen tamoxifen used for ovarian cancer as well as breast. Best of luck to you
Thank you so much for replying. Would you mind telling me where second surgery was for? I see few on carbo/ gem combo. Were you HGS? I am really pleased you are doing well, good to read. Xxx
I had another full laparotomy and dissection of 3 metastatic nodes, unfortunately because one was adhered to a large blood vessel I had a large bleed that needed intervention from the vascular team and had a few more complications afterwards, not sure what HGS means?
Yes thanks I'm doing well, CT scans every 6 months now and last one showed 'no active disease ' so very happy with that, yes I was high grade serous too. Hope everything turns out well for you xx
Hi Laz, So sorry that you are suffering a recurrence. My story is a long one I was diagnosed in 2014 3c ovarian cancer. Usual surgery and 2 recurrences. Usual chemo carboplatin taxol at first then carboplatin and Caelyx . Up to now have always responded to Carbo but never lasted the full course as my bloods wee too low. From what I recall caelyx wasn’t too bad but I didn’t receive that much.
I have been in your predicament and I took the chemo and the parp inhibitor, that was in jan 2019 and I’m well now.
I have taken anastrazole but it was for breast cancer, I was diagnosed in 2018 and initially given that drug, it suppressed the hormones then I had surgery.
I know that being left to make the decision yourself is hard but I’m sure you’ll make the right choice do your research.
Your history and initial diagnosis is an absolute replica of mine, except I had to have emergency surgery for suspected bowel blockage in July 2020 - turned out to be adhesions. Surgeon took several tissue samples during this surgery but no cancer showed up. CT scan done at the time was also clear. Follow up CT scan showed tiny “suspect” spots, but too small to definitely say it was a return of the cancer. Meanwhile CA125 was slowly creeping up. I was offered tamoxifen which I was told might slow down progression. I went on tamoxifen for 2 months but I found it very hard on my joints & sadly it had no effect on the cancer & CA125 doubled. Further CT scan in April showed definite disease spread & have just had first cycle of 6 monthly cycles of caelex/Carboplatin . Worst reaction to chemo has been waves of nausea and severe fatigue but is definitely “doable”.I normally do not contribute to medical opinions on this site as no two cases are the same but had to respond to you. I am a lot older than you, so whatever your decision - good luck. If you wish to message me privately, please feel free to do so.
Thank you very much for sharing this. Am gathering the chemo is the tougher but probably more effective route. Do they give you anything for the nausea? Onc has mentioned possibly, but not definitely, losing hair again on chemo. I could maybe call the moderator on here to discuss if they offer this? I wish you well with this regime xx
Yes, I had excellent anti nausea medication which worked very well. Hair loss/thinning is listed as one of the side effects but my oncologist said she had never had a patient suffer hair loss on caelex/Carboplatin but ..... the fatigue is the worst side effect as far as I am concerned. Good luck with your decision - do let me know how you get on.My chemotherapy is scheduled every 4 weeks so in theory it should give me time to recover in between cycles.
Thank you. I was like a complete zombie for all except 4 days every round on carbo/ taxol so am hoping not as bad as that. Good luck on your next few sessions xx
Hi. Sorry you have a recurrence. I would pick chemo and PARP if it were me but I don’t know much about tamoxifen. I also found frontline almost unbearable but found carbo caelyx much more tolerable. I would be wiped out from two days after until a week after but then felt quite good for the remaining three weeks of each cycle. I didn’t get to ned but then Olaparib wiped out the remaining cancer. I’m sure others will weigh in about tamoxifen.
Thank you for replying. Great that you are now clear. How long have you been on Olaparib? I wonder how they choose which parp to use... think onc mentioned a different two to olaparib. Xx
I’ve been on Olaparib for 13 months and have a scan next week. My sense is in the UK they give Olaparib to BRCA positive people and one of the other two to BRCA negative. In the IS it’s more the onc’s preference.
Hi. Meant to say US. I am on two thirds dose of Olaparib and did have mild nausea in the beginning, easily controlled by one odensatron in the morning. The fatigue took longer to be tolerable-like six months. However it is worth it.
Hi, I had that chemo combination and then Niraparib. They chemo was a lot easier for me than the frontline. I had it on the Friday and was ok, went to work on the Mondays and then crashed for about 4 days but then ok. No nausea, just tired and very dry and peeling hands and and feet (Aveeno skin relief worked for me) Niraparib is fine and CA125 holding between 9-13. I am 53 x
Hello, thank you. That really gives me hope. Are you disease free now? Also is it ok to ask if you were braca negative and HGS? You are a young whipper snapper!😂
Lol! I feel about 93 some days!! I haven’t had a scan since I’ve started it. Not sure why but he says my CA125 is my indicator and also symptoms, so I don’t really know if disease free? But CA125 dropped since being on it. I am/was 3c HGS and BRACA2 positive. *touch wood* it seems to be working for me so far, and I feel that good sometimes I can even ‘forget’ or at least not think about it all the time! xx
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