I’m due to see my oncologist next week as my ca125 is rocketing. Ive got HGSOC , went straight from first line (carbo&taxol with debulk) to 2nd line (weekly taxol&avastin). Rotterdam regime has been mentioned as 3rd line but given its intensity and the fact I’ve been on chemo ever since diagnosis in March 2021 Id rather try a 3weekly regime (carbo /caelyx or carbo/gem). I don’t really have solid tumour but main issue is pleura with reoccurring effusions. If anyone else has had a similar journey/symptoms I’d be really interested to hear what chemo combos they have been on - what’s worked , what’s tolerated. My onc is open to me turning up with my own research so I’d be so grateful for some anecdotal stories, protocols that I can look into that might be a kinder but still effective regime. Many thanks Charlotte 🙏
chemo advice: I’m due to see my oncologist next... - My Ovacome
chemo advice
Hi Charlotte, you have had quite a time of it so I can appreciate why you are not keen on a weekly chemo with nasty side effects!
Are you platinum sensitive? If you want a carboplatin combo, then it would be good to establish whether they think the cancer will respond to a platinum chemo.
The Rotterdam regime does have a reputation for being harsh but I read posts on another forum which suggested that people react differently and some find it very tolerable.
Have you considered any trials? It’s sometimes good to get a second opinion, if only to confirm that you are on the right path.
I had pleural effusions too and they can make you quite poorly, so I hope you find the right plan very soon xx
thanks for replying Lyndy - I think they would say I’m platinum resistant as I only had a partial response to first line chemo. I have done a Datar tumour and blood analysis which reported I am reactive to carboplatin but I appreciate in vitro isn’t reliable… my report also said my MRP was high so that’s not encouraging. I’ve been told I’m not eligible for any trials as I don’t have any tumour burden 🙄. Odds are stacked against me!
I didn’t know that they will only take people with solid tumours on trials.. wow. Maybe ring the Ovacome helpline and ask about Rotterdam? They might have useful advice xx
Hiya Charlotte, Ive just done the Rotterdam with Etoposide tablets so it was only 3 Cisplatin with a 2 week break then another 3. To be honest if I hadn’t had another issue with lymph’s and liver I think I would have found it really tolerable. I had Carbo/Caelyx previous to it and also weekly taxol/Abraxane and they were not harder/easier than the Rotterdam. Shame they didn’t work, I’m asking onc about trials tomorrow, it will be interesting to see if enlarged lymph’s are counted as solid tumours. Good luck with whichever you choose. Bex xx
hi there ! Was hoping you could give me up date on if you are eligible for trials….I too have no solid tumors but enlarged lymph nodes on cisplatin and gemzar for second reoccurrence in 2 1/2 years. Olaparib did not work neither did avastin
Do you mind me asking how long you have been on cisplatin and gemzar? has it been tolerable? Did it bring your markers down? Thanks Charlotte x
had two full sessions and markers dropped 13 from 30 to 17. You may ask why they started chemo when I was still in normal range …. I knew it was back and my oncologist knows I know my body my ca rose from 8 to 22 within 3 months and I could feel it was back! It is different for everyone but found no more different than taxol carbo or Calex carbo. Have three more sessions!
Hiya, They wouldn’t consider it until my bloods are normal which will be very soon but she did say that there were no trials opening at The Christie that would be suitable at present. She did also say they do open often so to keep asking. I suppose that means lymph’s are eligible 😂 xx
wouldn’t that be great!
Thanks so much Bex, we sound quite similar. For the short time you were on Rotterdam did your CA125 go down? Also did the carbo/caelyx give you any remission time? My lymph nodes are also enlarged but not enough for them to do anything about it. Please let me know if your onc comes up with anything interesting on the trial front. Thanks again and all the best… we deserve a break! Charlotte x
Yes CA was over 4000 at the beginning and reduced to 1500 and the break I had between cisplatin was prolonged due to bloods. The golf ball lymph under my arm disappeared but other abdominal did not respond. All regimes must have done something otherwise I doubt I’d still be here. They are trying Letrozole but I don’t think they expect a lot as they have issued the DS1500. I had a good 7 months between Caelyx and starting weekly Taxol. I’ll let you know definitely. also going to ask about self funding Avastin. We really do deserve a break, hopefully health will hold out for the next week as I’m going for a few cheeky nights in Italy. Love Bex x
Thanks Bex and best of luck. Have a blast in Italy x
I did carbo/caelyx, it saw off a tumour in my pectoral muscle, but didnt stop my CA125 rising, so a mixed result. It was however easy for me to tolerate. Now on weekly Taxol. Re the pleural effusions, I had a pleurodesis in May and had no more effusions since. Some people told me it would be painful, it was old fashioned, only a 50:50 chance of success; for me it was not painful at all, my oncologist often recommends it to patients, and the consultant who did it said she had a 75% success rate .. probably depends where you have it/who does it. Worth exploring x
oops I’ll try again!… thanks - I have felt worried about doing the pleurodesis. My mum had it and it was all the horrors you hear about. But the consultant who has been doing my drains I really like - generally don’t feel a thing. Did you have both pleuras done? Apparently there is a shortage of talc so they are using doxycycline instead (this is commonly what they use in Europe). Maybe I’ll have a re-think. I was hoping a new chemo regime may help - I had a infusion in my right pleura in Dec and the taxol/avastin sorted that. I’m so sorry the carbo/caelyx didn’t bring the ca125 down but hopefully weekly taxol will work. Mine’s about 2000 - I really feel I’m running out of options. All the best 🤞🤞Charlotte
thanks! I
Hi Charlotte,
Im on 4 th line chemo since Sep 2019. I have done carbo / caelyx which was ok. Got about 12 weeks off chemo then my bowel blocked. Sometimes delayed because bloods slow to recover.
Im currently on carbo/ gem but only have double dose not the second dose. Had 4 x doses. I can't compare to Rotterdam as not done it.
Like you feel ( well known) that options are closing down.
Good luck in decision
Sara
Thanks Sara, Thats a good long time on 4th line and gives me hope. Best of luck. Charlotte x
Sorry I explained badly. Ive had 4 different chemo since 2019. This one only since july
Chemo
Gem/carbo 2nd line
Second Line chemo - Avistan
Port a cath
