The AZD4547 trial
October 11, 2016 at 6:56 pm #9607
Hi all, I have decided to carry my post away from the introductions page as I am now moving forward and am currently undergoing screening to participate in the The AZD4547 trial at UCLH.
Unfortunately things did not pan out in Liverpool. My metastatic friends proved too much for either surgery or SIRT. But was that going to stop me !!
So my lovely oncologist referred me to UCLH , Professor Bridgewater.
So off to London we trekked & low & behold appears I have the particular mutated gene they are looking for, of course I do!!?
Signed up & started the screening process last week. It has been a bumpy ride so far as without chemo I feel very vulnerable & I have had a couple of set backs. Also coming from my research background I am probably the patient from hell, who asks way too many technical questions.
I am however the eternal optimist & feel that if this trial is as effective as I believe it could be, it could definitely be of benefit to other Cholangiocarcinoma patients, if they have the same mutated gene.
So approx 1 more week of screening, culminating in yet another biopsy ?.
I will keep you updated.
XX AJOctober 11, 2016 at 7:18 pm #9609
Huge thanks for coming in on Clinical Trials and Treatments to update us on what’s happening with you, Amanda.
Did you get a chance to meet John Bridgewater in May at AMMF’s Info Day? I’m glad to know that you’ve been to see him, because if there’s anything going in the clinical trials area for cholangio patients, then he will know about it and is definitely the person to see.
Good news (in a weird way!!) that you have the FGFR mutation. Personalised medicine is very much the way forward, so we’ll keep everything crossed that this treatment is effective for you.
You have the best wishes of everyone at AMMF for this – please come back and let us know how you get on.
Helen xxOctober 15, 2016 at 4:47 pm #9641
Hi Amanda – sorry that the surgery/SIRT options didn’t pan out, but so pleased to hear your news about the trial. I think that this sort of frontier medicine is where we will find the answers and fighters like you are going to help us get there! Hugs xxxNovember 1, 2016 at 11:20 am #9733
Things have not quite gone to plan. I commenced the screening process for the study on the 5th October. As an oncology research nurse I am probably more critical than most patients. But i was expecting a lot more from such a large & renown research facility as UCLH. It has been a very bumpy ride to get through the screening. Misinformation, lack of patient centred thought or care, little knowledge of the research protocol. Then because of all the delays extending my time off treatment unnecessarily , my LFTs were out of range for the trial, we attempted to start the trial twice, but both times my blood results ruled out inclusion. I am now symptomatic, itchy skin, pale stools, dark urine & extremely fatigued, all of which I have managed & avoided to this point. So the trial has now been withdrawn and I restart chemotherapy on Wednesday.
I felt that whilst I was well I had to try to push the boundaries to hopefully find treatments that had potential for CC patients. The risk has not paid off this time. I just need to concentrate on getting back to the best health I can asap & hopefully arrest any damage done by the delay between treatments.
I still believe that the only way forward is participation in research trials but I will definitely take a bit more time to research both the team & the facilities running them.
AmandaNovember 1, 2016 at 5:23 pm #9735
I’m really concerned to learn of the extremely poor treatment you had at UCLH – quite unforgiveable. I certainly hope that once you get back on chemo, those new symptoms subside and you start to notice an improvement in your general wellbeing asap.
Thank you for letting us know about this situation.
To go forward for a clinical trial, especially a Phase 1 trial, is an incredibly altruistic thing to do – so to be subjected to such poor, neglectful standards at a major centre is disgraceful.
I’m so sorry you’ve gone through all this – please keep us posted on how things go when you get back on chemo.
Helen xxNovember 19, 2016 at 7:41 am #9777
I did restart chemo & managed one cycle before my liver function worsened. I am now doing everything in my power to turn it around but the team feel that the 6 week break from treatment & the mismanagement of my condition at UCLH has allowed the disease to progress rapidly. At this time it is unlikely I will be able to return to chemotherapy and we are now looking at supportive care.
As an Oncology nurse I have seen disease progression that instigated rapid decline for my patients but i have also been completely taken off guard when it has stabilised without therapy & allowed the patient to continue on. It is the nature of the disease.
I am still positive but now taking each day at a time.
I will be documenting my time with UCLH if only that they learn from their mistakes.
I will keep you informed .
Thank you for your support.
AmandaNovember 19, 2016 at 10:21 am #9780
I’m so sorry to learn you your liver function has worsened so much that you have now had to stop chemo.
Unfortunately, cholangiocarcinoma is such a devious, insidious disease, and it can be so hard to know exactly what the path of progression might be.
However, as you have seen as an oncology nurse yourself, things can stablise even when not on active treatment, so you are right to keep on thinking positively.
And please do document everything that happened at UCL, it’s important that they are made to realise the errors they have made and what it has cost you. And as you say, they must learn by this – if only to save another person being subjected to such a catalogue of errors.
We all send you our very best wishes for your wellbeing – and as you say, a day at a time …
Helen xxMay 11, 2017 at 12:15 pm #10596
I have read your thread and am so glad I did, The Marsden are holding this trial open for me and I must admit I was concerned by the results before I read this. The trial I am looking into has seen 1 in 6 trial members with a 30% reduction in tumours, which is a big gamble, especially when you are considering stopping Chemo to proceed with the trial.
Following the conference today I understand that there is more than one FGFR trial currently underway so I will investigate this further. Any further information anyone can impart on this subject would be gratefully received.
Amanda, I sincerely hope your circumstances have improved and thank you for sharing your experience.
KathrynMay 12, 2017 at 2:43 pm #10599
Thank you for coming to our Conference yesterday, it was lovely to meet you, albeit briefly. We hope you found it of interest.
We are delighted that you have found our Forum, as this is your first visit, you may wish to re-post your question to Introductions and the Patients and Experiences sections as it may not get picked up in this thread.
We are sure that others will come in to help with information.
You must be logged in to reply to this topic.