Immunotherapy trial

[angeladale]

As a lot of you know , I completed 5 th line of chemo last August . A survivor of sorts . Now waiting to start immunotherapy trial and wondered if anybody else was in limbo at the moment ? I am feeling , unlike me , quite anxious: that's s politics too probably , but very I am . Any thoughts , and if like me , you are over 5 years stage 3C high grades serous on diagnosis , can you let me know what you were on and might be going on , especially if it might be immunotherapy ?

[trix70]

Hi, I have the same cancer and it's now over five and a half years since I was diagnosed. But not doing as well as you now, see my post today.

3 and 4 lines of chemo this last year have not worked.

Good luck x

[angeladale in reply to trix70]

I am so sorry that you are going through such a wretched time ; the waiting makes it all worse and pain is draining and exhausting . I am quite sure you wanted to push the exit button . It is a fight , all of it ...and it shouldn't be .

When I left Barts and went to UCH , my notes were biked over with their real blessing ( not just happy to get rid of me but wanting me to do well . )

I do seem to have bounce back , and that only goes to show how different we all are , and how difficult for those treating us .

The immunotherapy drug is PEMBROLIZUMAB but so far , I am still waiting for paperwork etc . The ct scan done recently will lapse and I will need another ...I absolutely share your anxiety but wish you every best wish possible .

xxx and a hug of strength .

[Beth25]

Hi, not quite 5 years. I was diagnosed 3c high grade serous 4 years ago and finished 3rd line (weekly carboplatin and taxol) in January. I'm seeing my consultant tomorrow for my routine 8 week check and interested in what trial you are going on and where as last time I saw her we discussed immunotherapy briefly. After January she estimated 6-7 months before I might need further treatment but although I know my CA125 is on the rise again I'm feeling really well at the moment (a week in Spain with my family last week may have a lot to do with that!) so won't be leaping into,anything treatment wise until I really need to. However I'm interested in keeping a step ahead in terms of what might be available when the time comes. I'm not even sure if I'd be a candidate for immunotherapy as my bone marrow and white blood cells took a bit of a battering during 2nd line in 2014-15 when I was on the Pissaro trial. I only managed 2 rounds before I had to be withdrawn from the trial and it took months for the white blood cells to recover. They were decidedly dodgy last time as well and I only got through with the aid of the blessed injections so I'm thinking my immune system might not have the reserves to cope with this kind of treatment. I don't know if your experience has been anything similar but do let me know the name of your trial anyway and if I end up on anything similar I'll be in touch. All the best - I hope it works wonders for you. Have you long to wait?

Beth x

[angeladale]

Thank you for sharing what has happened to you .

No , it's very difficult , it seems to me , to be the " right " candidate ....we clutch at straws , but the suitability is down to the science , I suppose .

The immunotherapy drug is Pembrolizumab , if it happens ; I am waiting for paperwork .

If not , then cyclophosomide / with / without a trial drug .

Great that you had a Spanish holiday ! We live to see another day , and have some more holidays we hope .

Thank you for your swift reply and very best wishes .

[Beth25 in reply to angeladale]

Thanks for your good wishes. I saw the oncologist yesterday and it seems that my centre is running what might be the same trial into Prembrolizumab. They don't have anyone else on it yet here but at their internal meeting she immediately said 'I know someone who'll be interested'! Of course she was right, I am, but my dilemma is that they are only looking for 325 participants worldwide and the encouraging results with melanoma patients has meant that the uptake seems to be swifter than for some other trials in the past and they reckon it will close in September or maybe even sooner. So I have to decide whether to sign up for the initial screening fairly quickly and while I still feel well or risk missing the boat on the trial I've been waiting for. My symptom free periods between chemo are getting shorter so the chances are that I'd be having chemo come the Autumn anyway so I think I'm talking myself into going with the trial. My CA 125 is well up on last time and it has always been a reliable indicator for me. My previous lovely trials nurse was there yesterday too and I would be in her care on treatment days. I don't know about you but I think the continuity of care and support during trials is one of the aspects that I most appreciate. Just knowing that you will always see the same nurse who gets to know you well as a person as well as a patient, and has time to spend with you, was enormously helpful and reassuring. It was she who in 2013 recognised that I was struggling with the psychological side of treatment before I even admitted to myself and was instrumental in arranging counselling which was a real turning point for me. Such a contrast to the general chemo ward where with the best will in the world the staff were so overloaded that I felt like a just another patient on a never ending conveyor belt. Anyway, she said that the rules are that once the consent form is signed you have to start within 28 days, but I'm not sure if that means start the screening process or start the treatment. I will ask tomorrow when they call to discuss my thoughts. They will keep their eye on the number of sign ups across all participating centres so that I can leave it as long as poss before signing on the dotted line. Hopefully that way I might not start until late August/September - so much I want to do before getting back on the treadmill, although 3 weekly treatment will seem like a bit of a breeze after weekly chemo! I got a lot of paperwork yesterday giving all the details of the trial - is this what you're waiting for? If it does turn out to be the same one it will be good to have an immuno-buddy to compare notes with so do feel free to pm me.

Well done if you got to the end of this - I just re-read and its a bit of a ramble. I can do concise too - honest!

Beth X

[HopeP]

Is pembrolizumab not an immunotherapy drug used in melanoma???

[angeladale in reply to HopeP]

Yes , I believe it is ...they are rolling it out with other cancers ., with some success . " Keytruda " in America , I think .

x

[HopeP]

So are they trialliing this for ovarian cancer in the uk??

[angeladale in reply to HopeP]

UCH should be ...but so far , I have not recieved the paperwork for the trial although it is in the pipeline for a small group . That's all I know , I;m afraid .

Will kep in touch x

[HopeP]

Interesting, thank you x

[Rosanne123]

Hi please cAn you help me I was diagnosed with Ov last year relapsed within six months chemo not working so please can you help I have looked into the immointherapy I have done research into this in America I live in the uk how did you manage to get it or were do I go to sign up to it thanks good luck sending my love xxx

[Beth25 in reply to Rosanne123]

Roseanne - see my messages above. You need to speak to your oncologist about what is available and appropriate for you. Also if you look on the Cancer Research website you can find details of all trials which are currently recruiting.

cancerresearchuk.org/about-...

I have just been offered the opportunity to participate in what sounds like the same trial as angeladale. I am in Scotland. If you are willing to travel it is possible to ask your oncologist to refer you to a centre which is offering a trial if your own centre isn't a participant.

Good luck

Beth x

[Rosanne123 in reply to Beth25]

Thank you for your kind message much appreciated best of luck to you

[JanePW1965]

Hi Angela. My mum was diagnosed 3c high grade serous at the end of 2013. She had debulking and carbo/taxol either side. Recurrence six months later. Had second line Caelyx x 6 and was told there was a 15-20% chance of it working but it seemed to work OK for her, although her CA125 is still hovering around 170. She had her last Caelyx on 21 July 2015 and has been on 'watch and wait' ever since with 3 monthly appointments. She had a CT scan on 23 June so we're waiting for the results of that. But I would be really interested to hear what comes next. She would be willing to have more chemo. Which types of chemo have you had over the five lines? Thanks. Jane x

[angeladale in reply to JanePW1965]

Jane , it looks as if your mum is following a similar pattern to many of us here ; although we all react differently to the drugs .

In 2011 I was on the usual , Carbo ? Taxol .2012 , Carboplatin and gemcitibane .2013 Cisplatin and Etoposide ( known as The Van der Burg regime ...then weekly taxol until june 2014 . in Febuary 2015 Caelyx but horrid reaction , ditto Carboplatin ... and then on weekly cisplatin until August 2015 .

I am lucky , more than , to be still here and looking forward ( huh ! ) to Immunotherapy trial ...if not , something else .

The biggest leap is to accept that " Remission " needs to be replaced by " management " ...in , " I have managed disease " . and then life carries on, albeit in a somewhat shrunken fashion .

But life , is life .

My very best wishes to you , and your mother .

[IrishMollyO]

Hi Angela

I follow your posts with great interest and admiration as like many other women you are a real fighter . You have fought and won many times . I was also diagnosed with stage 3c high grade serous PPC 5 years ago. In Mar I was told my peri aortic lymph nodes were swollen but nothing has been done until I get results of a follow up scan end of Jul. a Before that happens I will be putting up a post with some questions I want to sort out in my head.

Unlike you I have never been on a clinical trial so I just want to wish you success once more. I call you a real survivor and an ideal candidate for a clinical trial. I also think you have had excellent treatment and follow up from what I remember. You strike me as being very proactive and I do think that counts for a lot provided you have a good team. I think it is great that you are bring offered immunotherapy as that is the future and you are already stepping into it. Good for you. I wish you all the luck in the world .

XXX

[angeladale in reply to IrishMollyO]

You are so kind , thank you . Only my nearest and dearest could say if you were correct in your appraisal of me .

I haven't been on a trial actually , just used up most of the more obvious chemos . I too have swollen peri aortic lymph node and area sub diaphragm ...The watch and wait has been going on since last August , so this has been my longest period yet , not on chemo within six months .

So nearly a year to get stronger although not fitter . I walk daily and do Doris Day in the house/garden but that's about it . Vitamins , Turmeric , Cider Vinegar sometimes , all sorts of things sometimes if I remember .

Fruit , Veg , some meat , some fish , pulses etc ...but nothing out of the ordinary .

So yes , I am looking at the future hoping it will be Immunotherapy ....

But anxious at the wait . Thank you for all your positivity and my fingers are crossed for you also .