Taken with Lumia Selfie

To give you a little background, I was diagnosed with KC in May last year. Following a CT scan I was told that there was a thrombus in the inferior vena cava, as well as some local lymph nodes – the surgeon was fairly certain that they would not be able to remove all of the lymph nodes & I would require further treatment, with TKIs. The day after surgery he confirmed that lymph nodes had been left behind.

A few weeks later I had my first consultation with my local Oncologist. I had given no thought to the option of clinical trials, but he raised it at this point, suggesting that if my follow-up CT looked appropriate he could refer me to Prof Tom Powles at Bart’s. In due course, this is what happened.

There are positives & negatives to clinical trial.

For me, I had gone back to work & quickly stepped back to working full-time, with few restrictions on what I could manage, so I was really feeling “normal” again. Going to Bart’s, I was given a huge document detailing information about the trial & potential side effects of the drugs involved that it well & truly knocked me off my newly found secure space. For the next few weeks, while tests were done & I waited for the trial to begin, I have to say only a great bunch of colleagues at work kept me reasonably sane & able to function.

For most people, like myself, a clinical trial will mean travelling further to appointments. This was another thing that made me struggle with work as it means every appointment is a whole day off; I usually have a good handle on what has been going on & the people we have been seeing as a team, but kept being asked about things I knew nothing about, as I had not been in on the day in question.

On a trial you do not have a choice in which arm of treatment you receive, so while you think positive & hope you are getting the best possible, once you start it can be a let-down to find you are on conventional treatment. This is something you just have to put a positive spin on; after all, the newer therapies have yet to be proven to work for everyone. The other side of this is that once in the system, if treatment is no longer working for you you may be eligible for another trial as it comes along.

On the positive side – monitoring is more frequent than if receiving treatment in the conventional manner; first scan is at 3 months, but then every 6 weeks for the next year, so if things start to go backwards I will know quickly & alternatives can be considered.

There is a Team, with contact numbers, so any problems can be discussed over the phone, & hopefully resolved without needing to travel to an extra appointment – I know my local CNS would have been available should I need her, but others on the KCSN site clearly do not hae this support.

Travel costs are met, up to £50 per visit, so for me to go up with my husband only puts us a few pounds out of pocket – it would mount up very quickly if you had to fund this yourself.

Clinical trials aren’t for everyone, but is it certainly worth asking your local team if this could be an option for you; unless there is an obvious barrier, they should make the referral for you & let the Trials Team make that decision, as only they know all of the criteria to be fulfilled.

Sue

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