The waiting room is quiet

FormerMember
FormerMember
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Hi gang 

I’m up at UCLH for mid cycle blood tests and an echocardiogram. It’s so weird! My friend drove me through streets that would normally be nose to tail traffic into central London and we immediately found a parking spot nearby the hospital on Tottenham Court Road. 

The trials unit was so quiet. They can’t start any new patients and lots of straightforward checks are being done remotely (local bloods and a phone call). So I whizzed through the process of blood tests, observations and consultation with my oncologist super fast. 

Now I’m in the main hospital waiting for my echocardiogram. The normally crammed waiting room is as the Marie Celeste. There is literally no one else here. The reception is unmanned so I’ve popped my head into the clinic room. They’ll be with me shortly. 

It’s all very strange.  

As an aside, I had an interesting discussion with my oncologist. She emailed me two weeks ago about the dramatic drop in the blood cancer marker, which was down from 14,000 at the start to 1,600 after cycle 3. She feels this is unlikely to be due simply to the current drug I am on (a biological therapy) but is likely to have been augmented by the immunotherapy I had in October and November last year. At the time, it seemed that this immunotherapy had not achieved anything but now a different picture is emerging. She said she’d like to test her theory by putting another patient with a brca mutation but who hasn’t had the immunotherapy into the trial to see what happens. But all trial recruitment is halted. 

I hope everyone is having a good, safe day. It’s nice being out in the world just briefly but I’ll feel safer once I’m back home 

xx

  • FormerMember
    FormerMember

    A delayed response to immunotherapy? That's interesting,  

    I had six cycles of immunotherapy (Pembrolizumab) last year, with no apparent benefit. I did, however, develop immunotherapy induced colitis, which caused me to be removed from the trial, and later a very strange reaction which kept me in hospital for much of January and February, and prevented me from joining my new trial in time. It would be nice to discover that the Pembrolizumab achieved something after all! 

    Am I right in thinking your current trial drug is AZD6738? (I think I remember you posting that.) I would have been taking that along with Olaparib if I'd been able to start before the current crisis. No brca mutation, just triple negative breast cancer. 

    Whatever the cause, I'm glad you are seeing some positive results. Long may it continue.

    Xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    Wow. I feel like I bagged all the luck. Yes that’s the drug on. My oncologist pushed super hard to get me on the trial quickly and I spent the week before Christmas attending endless appointments that she’d set up. We cut the screening time from 3 months to three weeks. If we hadn’t I think I might be in your shoes now. 

    I do hope you’ll manage to get on the trial at some point - and that I continue to get good results. CT scan in a fortnight 

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Far from bagging all the luck, I think you're well overdue for a fair share of it. You've had a dreadful time. 

    Fingers crossed for the scan.

    Xx