Some of you may recognise my name from being on here for the past 2 or 3 years. Last summer, I volunteered to be a 'Consumer Rep', along with Chris & Eve, for CRUK-UCHL (Cancer Research UK and University College Hospital London) gynaecological cancer trails panel.
This morning I have heard I'm to be one of the 'lay people' on the panel for a new trial which hopes to be ready to recruit in June, this summer. The link for the detail of the trial has just been published on the worldwide database of clinical trials:-
I’m on Patriot and have my first scan today-keeping fingers crossed. The trial is a targeted therapy for solid tumours-if conventional treatment has failed.
The octopus trial I fit all the criteria but have no safe place to biopsy - which also makes me in in eligible for a number of phase 1 trials.
The other one I was eligible for was a blind trial and my disease was progressing to fast to go through screening and then potentially get the placebo.
Thanks very much for this information. I was diagnosed with clear cell stage 3C in May of 2017. I am in Canada, but will be checking to see if this trial is available in Canada.
I've checked with my contact here in London and sadly, this trial is only to be run in 5 centres within UK.
It may be worth emailing the contact given on the trial page in the link I posted asking if they have any Canadian oncologist/researchers in their network who could 'learn' enough from them to follow the trial 'informally'. Or show the link to your oncologist? Or maybe this sort of practice isn't legal....I simply don't know.
Good luck with any explorations. If you feel able to let me know any outcome of your efforts, I'd be really pleased.
I found a clinical trial in Canada with Pembrolizumab. It combines pembro with the cancer vaccine Survivac and also a low dose chemotherapy. I start the trial next week if all goes well with my blood work. My white blood cell count is slightly low. As long as it doesn't go lower I start next Wednesday.
I hope you are doing well. I will keep you posted on how the trial works out. We sure need something to work for clear cell.
Thanks so much for letting me know, Lucy, that your hard work has got you to this place. Which centre are you being treated at?
If your white cell count is low, is there something you can be given to boost white cell production a bit? I seem to recall that when our son was getting married (it 'fell' shortly after my third cycle of carbo / taxol in first line treatment), the oncologist injected me with something to give the white cell production a boost so giving me a bit a more protection with all those people around.
I'll keep my fingers crossed for you. The trial in UK hasn't recruited its patients yet...The Trial Management Group is still dotting the 'i's and crossing the 't's on all the protocol detail. I am still in remission so will remain the patient representative and as long as my clear cell doesn't return, I'll remain as this and not tip over into becoming a patient.
Hope you hold your own steadily and side effects can be coped with. Positive beams coming your way. L x
The trial is at Princess Margaret Hospital in Toronto Canada. My white blood cell count came up just in time to start the trial. I started last week with the daily chemo pills for 7 days. I get the vaccine and first dose of the pembro on Thursday.
Im so glad to hear you're still in remission! Best wishes to you. I'll keep you posted on the trial.
Thanks for the update; what a relief they are moving quickly. Yes, please do keep me up to date.
Here in UK, the trial is yet to start; I am still waiting to receive the Patient Information Brochure to check it over for the Trial Management Group who are all very experienced medics.
Thank you for asking about me....My latest CA125, back last night, shows I'm still in remission (since end August 2013) so I am sure that last major operation to remove the recurrence in Jan 2013 as two tumours close to the aorta and renal arteries must have got rid of all the clear cell carcimona cells. According to the oncologist, the dose-dense carbo-taxol + Avastin is unlikely to have been able to kill it completely, only slowed things down to a 'usual maximum of 36 months'...but even this logic doesn't dilute the anxiety as the time draws close and then waiting for the results.
Back to you - will beam out positive thoughts for you for tomorrow and the next weeks ahead.
hi I haven't posted before, I'm clear cell with 4 recurrences,diagnosed in February 2014, do u have to be NED? What a wonderful forum and fantastic bunch of ladies u all are
My full story is in my profile but I have had another reccurence since, am currently on chemo (camptosar/ irinotecan) so just wondering would they take women that are on treatment.?
I had just written you a long reply, then got side-tracked to something else in the forum before posting it and now I return, all my reply has vanished so here I go again!!
Where are you living? In UK the plan is for five different centres where staff have the skills and resources, but clearly, Lucy has accessed the drug through her oncologist at Princess Margaret Hospital in Toronto Canada.
In the UK trial, my understanding is that if your body meets all the criteria of 'Adequate Organ Function Laboratory Values' for bloods, kidney, liver & bone plus you do not have any of serious conditions which exclude you, e.g. hepatitis B or C, HIV, TB, or are pregnant and many others, then your current treatment would be stopped and the chemo allowed to 'pass through your system' so that the pembrolizumab was not being affected by the drugs you've been on.
Hence, please do talk to your oncologist a.s.a.p. and remember I am very much a lay person and only quoting what I've read in the draft protocol. The website for the detail of the trial, the inclusions and exclusions and the contact person, Laura Hughes is:-
Hi Lesley, thank u so much for your reply, I'm from Southern Ireland ,am currently on chemo but I'm finished in late May ,don't really know what the plan will be,I'll obviously have a scan and hope for good results from the chemo,I'm just looking for options I suppose but just worried the panic will set in if I get bad news again,I will talk to my oncologist ,seeing him soon. Thank u for the link I will have a read,again thanks for ur reply and wish u the best of luck. C B
Hi again, obviously, it would be great if you don't need further treatment but, I agree, about the worry of anticipating the worst...and how trying to be proactive does seem to help a little. I don't know if one of the UK centres for the trial will be Belfast but that is where Laura Hughes, the trial contact person, could be useful.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Reoccurrence Clear Cell OC 
Clear Cell Ovarian Cancer 
Clear Cell Ovarian Cancer
