Platinum Resistant. Advice please.

[5gems]

Hi I. have recently been told am platinum resistant and am wondering if there is a list out there of drugs I might be able to have to treat this. Would also appreciate ant advice on what to expect and if there are any trials available particularly in Scotland though I am more than happy to travel and pay my own expenses.

I have stage 3 OC and have had 18 rounds of chemo. Am inoperable and only now coming out of the shock of being diagnosed last April despite have had hysterectomy in 1980 and ovaries removed in 1987 ? Discovered in April 14 that they had left Fallopian tubes and either one ovary or a large part of 1ovary. Have not had a satisfactory answer to that particular question.

I trust you are all doing well and think about all of us every day and what an insidious thing this is. Take care and Thankyou all for the great support you offer.

[Whippit]

Hi 5gems,

I'd imagine the best people to advise you are the oncology team but I get the feeling you're not entirely happy with the treatment you've had to date if they've left your fallopian tubes and part of an ovary after surgery and they can't explain why.

A couple of years ago I changed hospital because I didn't think I was getting the full range of options there. Is that something you would consider if it meant you would have more confidence in your team. I have friends who are treated at Glasgow and Edinburgh and they speak very highly of the treatment there and opportunities to take part in research trials.

I got a lot of really helpful advice from Target Ovarian Cancer on clinical trials. They have a trials database on their website which is quite easy to use - clinicaltrials.targetovaria....

Alternatively you could get in touch with their Head of Research, Simon Newman. He's an active researcher and works for Target OC part-time so the best way to get hold of him is often by email - [e-mail].

Hope this is in some small way a help. Annie

[5gems in reply to Whippit]

Thankyou so much . I have followed you on this site and have found you very knowledgable and more than willing to share your expertise. It is certainly much appreciated.

I have not found many if any scottish women on the site but would love to as could compar notes, treatments etc etc.

It was tayside who did my hysterectomy and Grampian who did the oophorectomy. Unfortunately all of the docs concerned have retired it is so long ago and though I have recalled my GP notes to see what I have actually

Had done they have given me grave concerns as the note taking and record keeping are abysmal. One section of notes goes as far as saying I had not even had a hysterectomy.

Many of my notes have gone astray and did not move with me when I moved town many years ago.

I could go on and on but suffice to say it is what it is and I am so angry about it.

I will get in touch with the people you have suggested and though I am happy at the moment with my oncologist', I may well have to look at 2 nd opinions depending on my consultation next week

Take care and again many thanks.

[TinaB1 in reply to 5gems]

I am a rubbish advice giver but I wish you well xx

[5gems in reply to TinaB1]

Thankyou so much anyway for taking the time to answer. I really appreciate it.

[Hidden in reply to 5gems]

I really sympathise with your predicament, its a shock to the system to learn that things you thought were gone are still there. It is good you have a good team now but if you feel you want a second opinion go for it, . Sometimes the consultants do not record stuff as they should, been there, but done nothing about it. I decided just to stay with oncologist I have because he is one of the best. If I needed surgery in the morning would not under any circumstances return to gynae consultant I had previously. But the bigger picture is that I am here many years down the road and too busy fighting the disease to pursue any action

[5gems in reply to Hidden]

Thankyou so much. Yes it was a huge shock and yes I can understand exactly what you are saying. Unsure what I will do yet but will ask for a second opinion if not happy. Take care.

[marymarcy in reply to 5gems]

Wishing you well 5gems, I hope your experiences from now on with the health system are a source of comfort and security that you are being well treated and communicated with and respected.

Mary

[5gems in reply to marymarcy]

thankyou and I wish you the same. I am a year today from finding out an overy had been left but no nearer being reconciled with this fact considering I complained for years and years of discomfort and pain in exactly the area concerned. To no avail unfortunately. Thankyou again and hope all is going well for you all

[Whippit in reply to 5gems]

Dear 5gems,

I've just typed a reply and lost it!!!

I wondered whether it would be a good idea to share your worries with your CNS so she could look at your notes and scans, etc. and talk you through what has been done and your current status.

I know four Scottish women who have used this site but not necessarily so active these days. You can find members near you by clicking on the drop-down box by your name in the green panel and select 'people near me'.

Did you attend the Target Ovarian Cancer Being Together Day in Glasgow last September? I'm sure they'll have another. They have just decided to appoint a member of staff for Scotland so it's worth getting in touch with them to register your interest in meeting other women and to see what they can do to help.

I've really enjoyed getting involved with the charities as it's a way of doing something useful and getting to know other women with ovarian cancer from all over the UK. It's certainly worth signing up to their newsletters so you get to hear of any interesting events.

Hope all is well. xx Annie

[Taichipat]

I am so sorry about all you have been through and just to let you know I am Platinum Resistant and have now started on Caelyx. I think this is usually the next course of action.

Pat

[5gems in reply to Taichipat]

Thankyou. I see my consultant on Tuesday so will hopefully hear then what he has in mind. I hope you respond well to this regime and it deals gently with you. Take care

[thesilent1]

Hi, I bet this has all been a bit of a shock for you. I think bthey have only come to realise in the last couple of years that this disease actually starts in the fallopian tubes and not in fact in the ovary. That's what I learned at a Target being together day held in Belfast in Oct 13. I know there are a lot of other non platinum drugs that can be used as nd I am sure your medical oncologist will be looking at the most suitable for you. The ladies on here are great with a wealth of knowledge, albeit personal, about different drug combinations. I think the main thing though is to be guided by your team. Good luck and keep posting. Ann xo

[5gems in reply to thesilent1]

Thankyou for that and yes the GO who diagnosed me told me this also and I said I do not have Fallopian tubes and he said yes you do''''! Shock horror. I am seeing my consultant on Tuesday so here's hoing I get some plan then and told what is available to me. Hope you are well and managing this horrible disease.