Waiting for Appointment for Clinical Trial

[Pryced]

Hi, I’ve completed 18 weeks of Taxol following first recurrence and unfortunately the end of treatment scan showed disease progression. I had the standard Carbo/Taxol initially, then a recurrence after around 4 months so was started on Caelyx, which didn’t work and was swapped to weekly Taxol. This was interrupted by a few bowel obstructions, but I’ve now been told that there is no further treatment available to me other than to be considered for a clinical trial, which of course I’m keen to try. My question is, Is this really all that’s available prior to going on a trial? It’s only 3 drugs, I just feel that I haven’t tried enough yet for that to be it! Also, how long have you waited for an appointment for trial consideration, it’s been around 4 weeks now and although I’m feeling well due to not having any chemo, I’m getting anxious to hear from the hospital. Does anyone have any advice for me or questions I should be asking? Thanks x

[Yoshbosh]

Morning!

Have you been lined up to talk to a trial team or find out more about a specific clinical trial? If you haven't, then ask for that to be arranged ASAP.

When I was going on to a clinical trial last year, it was around a month from initiation of the consultation to getting on the trial itself, but I was lucky that my individual appointments coincided with the MDT meeting happening shortly afterwards so that decisions were made quickly. Even once I had been provisionally accepted onto the trial, there were a number of extra appointments that I needed before getting the drug - extra MRI and CT scans, further blood tests, a specialist lung test, an 'induction' meeting on the trial ward with more bloods taken etc. It's not a quick process, so I'd definitely chase up anything you feel is outstanding.

There are lots of trials out there, and even non-OC specific ones might be relevant to you if they are looking at a variety of 'solid' tumours.

Good luck and I hope you get your appointments through soon.

Vicki x

[Pryced in reply to Yoshbosh]

Hi,

Thanks for your advice, I’m not sure at the moment what trial would be available to me although I suspect my oncologist had the icon9 in mind as she said that my bowel obstructions may go against me. I think I’m just getting a bit impatient as ive been having treatment for the past year and going to the chemo ward every week almost felt like an insurance, and now I’m having nothing It’s a bit scarey x

[Hidden]

I am so sorry you find yourself in this position, it must be an awful worry for you. My understanding is that treatment is determined by several criteria, your stage and grade of cancer, weather you are BRCA positive or not, and your general health. I think I might of asked why you were not eligible for further treatment from your hospital, but I do realise that at the time you were probably in shock, can you make another appointment and ask them to explain exactly what your position is, and perhaps take someone with you if at all possible. I would also ask for a copy of your CTscan results and your CA125 then you could always obtain a second opinion from another Gynaecological Oncologist. I have also read on here about the care oncology clinic, I believe patients turn to them for treatment that is not available on the NHS, I have no personal experience but hopefully someone on here will enlighten us. careoncologyclinic.com, I wouldn't rule out trials either as many women on here are on them and will I am sure come forward and offer there expertise soon. Good luck and try to stay positive, your best treatment will be available to you very soon. xx

[Pryced in reply to Hidden]

Hi

Thank you for the advice, you’re correct when you say it was a shock as the previous scan I’d had showed reduction in disease and ca125 down to 49, three months later, whilst still on Taxol, ca125 up to 450 and disease progression, I felt confident that I would be having a treatment free period, but that’s not to be for now. I’ll look into the careoncology clinic as this is something I’d not heard of before. Many thanks for your advice and kind words

Diane x

[Katmal-UK]

Hi. Have you tried googling Cancer Research UK Clinical trials. There is a lot of information on there. Where are you based, I attend the Christies in Manchester for a clinical trial and previously did 2 at Clatterbridge. It would be worth investigating what trials your local cancer centre is running, if indeed they are running any. Would you consider travelling. I currently attend Christies every 12 weeks and have done so for over the last 5 years. Good luck. Do let us know how you get on .xx Kathy

[Pryced]

My referral is to The Marsden, I’ve looked at their website and it looks as if they are running a few trials at the moment and I think the one my oncologist had in mind is the ICON9 x

[Yoshbosh in reply to Pryced]

They have two separate trial teams - the Drug Development Unit which does Phase1&2 trials, and a more advanced unit for Phase 3. Hopefully both units are looking at your suitability. The DDU team are amazing - really supportive and the nursing staff are incredible.

Do chase it up with your hospital to find out when the referral was made, and ‘helpfully’ offer to follow anything up.

[LittleSan]

I'm going on the CEBOC trial at the Christie starting Monday. Not sure if that may be of use. Or possibly the Rotterdam regime. I'm sure your consultant will know what's best for you. Details are on the main charities websites. 💐😘

[MissEd]

My mum is at the marsden on the onyx trial. It is 3rd line but they have said if it doesnt work they can try chemo again..so dont rule anything out!

[Yoshbosh in reply to MissEd]

How is she doing, MissEd? I was on that trial for a month last year, but it didn’t work out for me 😔

[MissEd in reply to Yoshbosh]

Well she has had 2 treatments and the consultant told her her ca count has started dropping so thats good. Shes not had any side effects yet but is going to have a port fitted as they are struggling to get veins now xx

[Pryced in reply to MissEd]

Thank you, that’s really reassuring, I hadn’t even thought that far ahead.

[Colman]

Hi I'm currently on the OCTOVA trial and I attend clatterbridge.

Claire xxx

[Neona]

I fecurred during frontline so was only offered caelyx. Instead I paid for a consultation in London to get a quick appointment and with a week was at UCLH Research Facility discussing a trial. I was turned down for it but accepted on the next one about 5 weeks later. About 4 weeks of tests and I started on the trial on 19 th December 2017 and am still on it although having a few hiccups now. The drug is easier to cope with than the carbo/ taxyl .Also I am monitored fortnightly and scanned every 8 weeks.

[Hopefulgal1]

Hi I am alsowaiti g to be accepted onto the ONX trial just need to do all the pre- trial tests scans lung tests etc.. I had a lot more treatment though than you have had. I recently tried cisplatin with gemzar - it wasn’t successful for me but it works for some.

I am sure your oncologist knows what they are suggesting is right

For you so I wish you all the luck in the world too.. we are just trying to grab at Those lovely possibilities - and who Knows they may work!! Xxx

[Ski87]

Have you changed your diet?

Do you know your ca125 count presently ?

Keep on your oncologist to get your apt scheduled dont assume they are on top of it!

I wish you good health 💕

[Trathi]

Hi Pryced, sorry I can’t help I have never been offered a trial. I am on second line treatment at the moment and have scan booked for 30th, presuming if the tumours have not shrunk I may get offered one then, or may even ask about one then.

Sending lots of love 💕 🤗 and positive 3 thoughts your way xxx

[Lucidalil]

I am at the Marsden , lucky enough to live 30 minutes away. I have been on 3 trials over the last 6 years. In November I to go back on carbo gem then cisplatin/ gem to shrink some tumours , waiting for scans this week. As and when the rascals start growing again back up to trials unit hopefully if I meet the criteria. It is an excellent unit 😊

I am BRCA 1, 20 year breast cancer survivor, 6 year ovarian 3c 😁 xx