I have done Carbo/Taxol, Avastin, Carbo/Caelyx, Rubrac a and now Anastrazole. I have a scan coming up, but lately can feel the cancer spreading and am resorting to pain killers.
Can anyone who has had this many lines of chemo tell me what else was available for them to try, and also how successful it was please. Surely this isn't it?
Jenny
Hi. I’m sorry you find yourself in this situation. There’s gemzar aka gemcitabine and topotecan — those are chemo. But then there’s immunotherapy—maybe trials? Good luck!
For some reason my oncologist said he doesn't prescribe gem! Not sure why.
You are always entitled to a second opinion, from a major cancer centre, at any stage of treatment. If you are within reach of London, you can't go wrong with the Royal Marsden, and they have access to clinical trials too. There are other drugs that have had limited success, such as weekly Taxol and cyclophosphamide, but you need to be at a major cancer centre to get the full range.
I have read about other chemos on here- cisplatin, gemcitabine, rotterdam routine- guess it depends on your type of cancer. Frontline chemo didn’t work for me and I was offered caylx or a phase 2 trial at our local hospital. I decided to look further afield and paid for a consultation at the London Clinic and was sent straight to the UCLH Research Facility where I was put on a phase one trial. I recommend getting to a major cancer centre for advise unless you are already at one. My local hospital did not tell me about treatments that they do not offer and yet there are more out there if you are prepared to travel.
Where is UCLH please? To be honest, I am beginning to feel worn down, and am not sure that I have the energy to get myself up to London or similar. I live alone and sometimes everything is just all too much.
UCLH is central London (University College London Hospital) and is a centre of excellence. If you've got people telling you they "don't prescribe" certain chemos, you need the expertise of a major cancer centre.
Hi, I’d look on U.K. Cancer research for any trials and definitely ask for a second opinion?
Good morning. You can go back to carbo and to taxol after an interval in my case it was about a year. Also gemzar plus something else best bet is to find an onc who is dedicated and specialuzes in ovarian. And look at trials for sure. Hugs from paris
Hi Jenny, If I remember rightly you live in North England, The Christie in Manchester would be a major centre. Sue xx
No, I live in Kent. My hospital is a centre for excellence in cancer treatment. London would be my nearest major hospital, but as isaid, to deal with train then tube while feeling below par, then home again all on my own is not something I look forward to.
Morning Jenny, I’ve just started the Rotterdam Regime at The Christie, first week and it already feels like hard work but just need to get through the initial phase and out the other side. Take care xx
Have you started it after the same path as27-359?
Very similar, it’s 5th line after numerous, Olaparib parp, Carbo, caelyx, Abraxane. Avastin was planned with Abraxane but it was stopped at 10th week and Rotterdam Regime commenced. X
Thank you. Iam hanging on at the Rubraca stage and keeping fingers crossed 4 months in. Had my debulking at the Christie. Good luck. X
Long may Rubraca do it’s stuff! Keep well xx
Definitely. Thanks. 👍
I've heard that the Rotterdam protocol is hard. I hope it goes well for you.
Just found your post whilst browsing ovacome. Your situation looks very similar to mine. 5th line treatment and now on the Rotterdam Regime at the Christie. Now on the tablet only maintenance stage after “surviving” the intensive Cisplatin stage. I would be really interested to exchange notes with anybody on the same tough regime, especially as you are treated at the Christie. Best wishes Suzanne
Hey Suzanne, fellow survivor of Rotterdam so far! Cisplatin was intense, just finished those cycles and platelets were 36. Waiting for bloods to improve to start Etoposide again. How is your hair loss with the tablets? Certainly makes you appreciate what being run over by a bus feels like but all seems to be going the right way. Stay well and strong. Xx
Hi, I did 2 cycles of etoposide. These were tolerable but had some breaks due to bloods not being good. My last scan showed slight progression and increase in Ca125 so now on cyclophosphamide. I feel disappointed because I did the tough part! Regarding hair.... I thought it was coming back as it started to grow but just remained like a very light covering and did not grow any more. I hope you have a better response than I did. X
Got a feeling I may go on the same path. Bloods have been dreadful even with Etoposide dose halved. I think Prof said that Gemzar could be an alternative but as I have to travel try tablets first. Also said hair growing is a sign it’s not working but it’s so hard to tell after losing to Taxol what the growth was between treatment. 😂 I never thought I’d be worried about having hair, strange where this journey takes you! I hope the cyclophosphamide does it’s job and you stay stable. The Christie always seem to have another tool to try in their box. Stay well and avoid the cold that’s going round, I feel worse than post Cisplatin! Xx
I know what you mean about the hair. Lost mine due to taxol about 18 mths ago. I'm hoping to get it back on this treatment! I think my options are fewer now and it seems chemo infusions are out for me although I am encouraged that there are other pathways out there. Always hopeful of a suitable trial coming up. Something to keep up the positivity. I'm looking forward to a few days in Devon to recharge. Will try to stay clear of that cold and hope you get over yours quickly. xx
Has Avastin (Bevacizumab) been mentioned? It is targeted therapy. It has kept my inoperable tumor from growing. Praying for you.
Hi, I’ve just replied to a similar question from Joanne12, I’ll try to repost it here. xx
Hi, looks like can’t copy and paste my reply to Joanie12 but here’s a link. Sorry but it’s quite a lengthy post x healthunlocked.com/ovacome/...
Thank you so much for responding. We seem to be on similar paths as I commenced treatment in 2016 too, although not BRCA positive. One of the reasons the par P didn't benefit me I suppose.It is over a year since I had Carbo/Caelyx so possibly I could have single line Carbo again, or single line Taxol. I don't know much about Cisplatin, so will research before I see the oncologist next.
I think niraparib is offered to non BRCA patients-u cd check
I have already had Rucaparib, but it didn't help me!
Hi ,I've never qualified for a parp but am on 4 th line chemo. So -
Carbo/ Taxol/ avastin
Carbo/ caelyx
Weekly Taxol
Now on Carbo/ gemcitabine - however have been told that this is about sympton control not prolong life
I think the only option after this will be research trials but I'm trying not to think about it
Good luck
CT Results in. Not what we wanted
Dying hair during chemo
HERE WE GO AGAIN............MAYBE.....HOPEFULLY
Carbo/caelyx eye problems
