My Ovacome
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ONX 0801

After having previously posted about this trial and how keen I was to be included in it, I had a call yesterday to tell me that the trial was full. I am so disappointed because I really felt that it could have been a good way forward for me. Maybe if my oncologist had been quicker to agree to send a letter of referral for me my chances would have been better. My CA125 is rising again and am due a CT scan in August. I think I may be offered weekly Taxol, as this is my 4th line chemo and I really do not fancy that.

Lynne

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How bloody annoying!!

I'm seeing my onc next week for scan results and will be asking about Trovax (TRIOC trial) as I think I fit the bill. My last hospital appt was 29 June and after doing some research I found that trial and have been pushing ever since to see her so that I can discuss it with her. If the delay has hindered my chances, I won't be happy!

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If you feel it is for you push hard. I wish I had been more assertive.

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Hi Lynn, I am so sorry you have been let down. Do you know if you are still platinum sensitive if you are & are going on to your 4th line. What about asking if you can try Niraparib. I have been offered this I live in the South of the UK I am on my 3rd line & still seen as platinum sensitive I am not BRAC positive.

What I have read from your last post & this post is your onc seems slow at trying things that you have suggested. I know how that feels I have asked for so many different things I have read on here & the answers are, we are not there yet, a straight NO or some other bull sh*t.

We are willing to try anything if there is a chance it might work but we have to have the doctors on our side to do it. I hope you can get a suitable treatment that will help you. My thoughts are with you take care Cindyxx

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Hi Cindy, she just doesn't seem interested unless there is a trial in her area. There are trials in other hospitals in the country and I am prepared to travel anywhere. I have kept so positive throughout all this but without cooperation it is like beating your head against a brick wall. Lynne x

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Hi Cindy, to answer your question, I am not sure if I am still platinum sensitive having completed third line in January. I think they say if your cancer returns within three months then you have become resistant but here we are six months later and no I am not BRAC positive. X

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Hi Lynne, I feel your frustration it seems to me that they are just going through the motions ticking the boxes but not really getting their thumbs out of their back sides & doing something that would really make a difference.

I would ask them if you are still platinum sensitive & if you are why can't they offer you Niraparib. You might need to get a bit pushy & also ask if there are trails in other parts of the country & if so why can't you be put forward for them? I have a horrible feeling she has an answer for all your questions but not the answer you want to hear.

I like what Minard had to say about getting to know your trial consultant. I only knew my hospital had one when I visited the local hospice. Only because they have offered me this other drug that I have decided not to start pestering the trial nurse. Take care Cindyxx

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Hello - yes I understand how the process for trials can sometimes be a stumbling block. A couple of months ago I was keen on a particular trial and raised this with another consultant during a second opinion discussion. He said that they had just turned away three patients who'd applied as it was now full. It's a horrible feeling when that door closes in your face.

And when you spend time researching potential trial options, finally meet with your oncology team, put your case, and then miss the boat it's not good at all.

I'm beginning to find that the most useful step is to build a relationship with the lead consultant for trials at your hospital. They're keen to see patients access trials, by the very nature of their job.

Although I've managed to join a trial (coincidentally it's the weekly taxol arm which didn't sit well with me at first either), my go-to consultant for trials has already confirmed that there are a couple of others about to launch early next year which might be right for me. This gives us all hope.

Keep strong. There will be a trial out there for you x

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Thanks for the reply - I think I will call them again and ask them to reconsider in case anyone drops out. I do feel it is so unfair that we have to do our own research. I don't get the impression that we have a lead consultant for trials at our hospital. X

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I know what you mean about not knowing whom to address as "lead trials consultant". There probably isn't a job title like that and it's taken me nearly 4 years of treatment at my hospital to work out who was the best contact. My CNS has been instrumental in pointing me in the right direction. I'd ask your CNS directly who to approach - you can't lose! Wishing you all the best

Caroline x

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I agree with Caroline your Gynae liaison nurse is a good contact. Yes I would let it be well known you want into this trial just in case someone drops out. A second hospital is also an option see which hospitals are near you and who specialise in Ovarian Cancer. A second opinion won't go amiss

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That is the problem the trial is not being carried out at my hospital but at a cancer specialist hospital in London. X

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I live in the midlands and go to UCHL which luckily close to Euston every 3 weeks on A trial

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Was that at your own instigation or did your oncologist suggest it?

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The 1st Oncologist could not have been less interested but luckily a New Lady Consultant Oncologist arrived at the hospital, and I was assigned to her.After my previous 6 months of chemo clearly had not worked I refused anymore.Dr P thought I had mis match genes and looked at trials , and I fitted into one .

You can google what trials are available yourself

Xx

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Good for you - these doctors definitely do vary in their interest and compassion. I know which trial I want and I won't give up until I get it. Watch this space! xx

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Hi Lynne,

This trial is still showing up on the CRUK website, saying that phase 1 is closed, but phase 2 is recruiting - was it definitely phase 2 that is closed? Just wondering if maybe it was the timing of your application...?

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Not so sure about that, it seems that Phase 1 is in two parts and the first part was for anyone with a solid tumour which is now closed, the remaining part now open to only those with ovarian cancer. Phase 1 is scheduled to finish at the end of September 2017 so it is possible that sufficient patients have been enrolled that recruitment is closed. Having said that, the news recently about the good results for ONX-0801 for so many of the ovarian cancer patients possibly means that the trial will move quickly to Phase 2 or even Phase 3. Fingers crossed!

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Yes, it could be that. Whatever the reason, let's hope they hurry up and get it properly tested!

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I am now on weekly Taxol as I didn't fit the criteria for the ONX, apparently your lungs have to be perfect as this drug is hard on the lungs and I've got some nodules or scar tissue from the past showing, could have been in childhood. However my oncologist has said there is another trial in the pipeline of this drug and it maybe that they will have modified it so that I could have it. Apparently in the beginning before it was released it wasn't good on the lungs so I'm now on my 4 th line chemo and also I was on the Coral trial for 16 months which was great as it was just tablets every day no chemo. But the cancer in the end grew in spite of the drug and I had to stop.

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Very interesting to hear about your experiences with ONX. Until I meet with them in August I can only hope that I will be accepted and my lungs are clear, but you never can tell. Like you I will be facing 4th line chemo but I really don't want Taxol. Sorry to hear that your cancer came back too. We must keep watch on each other's stories.

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I did manage to speak to a member of the trial late yesterday and unbelievably I received an appointment in the post this morning. I have stage 4 PPC and all I can say is that I am so pleased to have the opportunity to meet with them and let's take it from there. With rising CA 125 and 3 1/2 years down the line I am running out of options. Until I see them I am not sure which part of the trial they are offering - maybe nothing, but fingers crossed. xx

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Fingers crossed - well done for getting a response.

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Good on you I am so proud of you for looking after yourself. Best of luck with the appt

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Very best wishes that all goes well. I admire your persistence. I do think clinical trials are our major hope.

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