Cisplatin

[coksd]

Hi Ladies hope ye are all well as possible. I need some urgent replies as I think I must have the most impossible oncologist to deal with .

I had frontline chemotherapy which ended in April 2018 I was on avastin for maintenance, my Ca125 started to rise and I had a ct scan in September that showed disease progression I went back to the oncologist and, he said I was platinum resistant while I know this is technically the issue I went to a private hospital and offered cisplatin to see would I have a response the private hospital is a 5 hour round trip to my home I have 3 small kids so asked could I have it local and this was refused. Could anyone let me know their platinum drug responses or bad reactions if any or got a second platinum drug in a close time and if it worked or not. Thanks in advance, XX Clare

[Lou53]

Hi Clare, I had NED after first line chemo of Carboplatin/Taxol after my operation but recurred after just 3 months which technically means I am considered 'platinum resistant' but I am currently on Cisplatin and gemcitabine and my CA125 is coming down after 2 cycles. I started this 2nd line at end of September having finished 1st line at start of May. I am at the Christie and they are clear that they offer this now as I am more likely to be able to withstand such a harsh treatment now (it really is so much harsher than carbo/Taxol). If I show a response to scan (does not need to be NED) and my CA 125 continues to come down I get access to a PARP inhibitor through the cancer drugs fund. Can you not push for a 2nd opinion to get Cisplatin on the NHS?

Best wishes to you, Louise

[coksd in reply to Lou53]

Hi Lou Thank you for your reply, I am in Ireland my local hospital in Limerick are refusing cisplatin and only offer gem or caylex on their own as single agent therapy. Did you have any bad side effects to cisplatin I would be getting it every two weeks. The new oncologist said the same to me if I get a response and try the oncofocus test it could offer more options as the Limerick hospital are saying I am platinum resistant and can't have parb inhibitors either. Is the Christy a private hospital. Thanks Clare

[Hidden in reply to coksd]

Christie is NHS or you can go private. I know that several ladies do come over from Ireland for treatment

[Lou53 in reply to coksd]

Hi Clare, the Christie is NHS hospital in Manchester and do offer second opinions which may help persuade your local hospital? With regards to side effects they have been pretty rough for me but I am having some non standard responses so it is hard to draw any specific conclusions from this for you. Also I am having cisplatin plus gemcitabine at moment - it maybe that single agent is more tolerable? Hope you find a way forward. Lou X

[coksd in reply to Lou53]

Thanks Lou I know its hard to know what is causing symptoms when you are on more than one drug I remember when on carbo/Taxol it was hard to know which caused them hope the symptoms subside and you can finish the regime and get a great response. Thanks C xxx

[Neona]

Please have a look at clinical trials. I am platinum resistant and was offeted caelyx but went for a second opinion and now on a phase one trial.

[coksd in reply to Neona]

Thank you Neona what trial to you get on I was offered Caylex but not happy to take it at this time. Thank again Clare xxx

[Neona in reply to coksd]

I am pn the Patriot trial which is for solid tumours and not specifically ovarian cancer. I have clear cell so I guess they try to match you to appropriate trials.

[coksd in reply to Neona]

Thank you so much I hope the rest of the trial goes well for you Thanks C xx

[Lily-Anne]

Hi

I’m no fan of Caelyx. I understand it’s a 18% success rate in platinum resistant women. Have they offered weekly Taxol?

You can browse the clinical trials on the NHS website. It may be worth it. One of the ladies on here travels from Ireland to the Christie every week so it is doable

LA xx

[coksd in reply to Lily-Anne]

Thanks Lily-Anne I will mention the success rate of caelyx to him tomorrow it doesn't really offer a better outcome he did offer taxol but I was very ill the last time on it and I was hoping not to loose all my hair again. Thanks C xx

[Janet235]

Main thing is everyone responds so differently on these different chemo regimes, you cannot personally take anything that will the same applicable to your own case

I soon was platinum resistant after standard chemo round one with surgery

Caelyx made me a lot worse ( so stopped)

18 weeks taxol alone was the best for me

5/6 sessions on Rotterdam Regime with cisplatin and etoposide tablets earlier this year was the toughest and I felt I never fully recovered from this...

However that was now 4 th line with only few weeks respite at a time on any treatment so getting tougher. Deferred latest.... but disease returning so first of cisplatin and gemcitibane two weeks ago which caused huge bile sickness and been in hospital ever since.

At mo can't contemplate any more

For more info and profile go to my page..

Hope it gives you the help you need

Janet x🌈

[coksd in reply to Janet235]

Thanks Janet it sounds very rough hope you feel better soon I will have a look at your page thank you

[harpist_UK]

Hi - I was declared platinum resistant in 2017 when my 2nd line treatment (carbo/gem) failed. Weekly taxol (3rd line) was also abandoned as it didn't halt disease. In July/August this year I did the Rotterdam (cisplatin and etoposide tablets) at the Christie and the cisplatin worked for me - knocked a third off the size of the tumours and huge reduction in CA125. After 6 infusions I continue on etoposide alone to see if that holds it - I found the Rotterdam tiring but do-able and got through it. Think my lymph nodes are playing up again so no idea how long my reprieve will be, but for me the cisplatin was worth doing and allowed me to have an autumn holiday walking some hills and beaches in Scotland. All the best and hope this helps.

[coksd]

Hi Did you manage to take a holiday while on the cisplatin or after it Hope they sort out the lymph nodes for you and have a less harsh option for treatment Thanks for this its very interesting to know it had a good effect esp after been deemed platinum resistant

[harpist_UK in reply to coksd]

The holiday was after the cisplatin. During the cisplatin regime I had weekly doses and had 3 days on steroids after each dose when I was ok-ish, then 3 days when I was asleep most of the time. I needed a blood transfusion at the end of the course as it can deplete your haemoglobin. After that I started building up doing things again and felt I was getting my life back.