Anyone intersted in partaking in a video?

[prbs2707]

Some of you may know that last summer I took part in making a video that described my condition, treatment with Venetoclax and subsequent outcomes. It was made by an American organisarion called "Patient Power" which is part of a group called "Remedy Health Media"

The purpose was to promote and explain the experience of the patient, right through from dealing with the shock of diagnosis, through treatment, together with all those ups and downs, and on to the final outcome post treatment. It was not for general distribution but was used to inform and educate health care providers about the uses and benefits of Venetoclax and its manufacturer Abbvie.

Initially I had a couple of zoom discussions with the team in the US to see if I fitted their criteria. Then filming took place last June. I found the whole experience deeply rewarding. Filming took place over 2 days and involved interviews with myself and mebers of my family and also location shots of me enjoying my regular hobbies which for me was walking the dog, cycling and working on my allotment. The resulting video is of the highest quality and I was very happy with the content. We had great fun making it and the film crew were all delightful and totally professional, two have become firm friends.

The final video was not all about me. There were 3 other participants. An American woman with chronic migraine, another American young man with severe Chron's disease and a young woman from the North of the UK with terrible Atopic Dermatitis. Our four stories were interwoven throughout the film. We have all benefitted amazingly from our drug treatments. I never met the other participants but have seen them on the finished video.

The woman who was my main contact in the US is the Patient Engagement Manager for "PatientPower". She has recently told me they want to come to the UK again this year to make a new video and wanted to focus on another CLL patient like myself. She has asked if I know anyone who might like to take part. If there is anyone interested you could message me (privately if preferred) and I will pass on her details so that you can email her direct.

I am not promoting this video in any way. All I can say is that I really enjoyed the whole experience, it cost me nothing apart from 2 days of filming, in fact I was paid for taking part. So its entirely up to you. If you are interested in taking part let me know, and of course if you would like to know anything more about my experience just message me.

Hope you are all well. I have just had my 3 month review and detailed tests having finished O&A just over a year ago and I remain UMRD Yeay!!

Patrick

[MickUK]

That is very interesting.

I had a zoom meeting with a lady from Patient Power on Wednesday where she was asking me about my CLL journey and particularly about my Venetoclax experience.

As I understand it, they are trying to build up a contact list of patients who may be prepared to join in future surveys or discussions.

I got involved because I responded to a post from one of the administrators on the CLL Support facebook group.

[MickUK]

Do you have a link to that video, Patrick, I would love to watch it?

[prbs2707 in reply to MickUK]

Sorry I don't. The nice lady who was my contact in the US did send me a copy on a stick ( but made it clear she was not meant to) and insisted I shouldn't share it outside my family. Something to do with data security as it does have 3 other individuals discussing very personal details. So I do understand that. Sorry! P

[MickUK in reply to prbs2707]

No problem, I hadn't thought about other people's privacy.

[Miu48]

Hi. I’m potentially interested. I’ve just completed my V treatment and am in a good place. My bloods are looking great and normal. I will have a bmb in July to check MRD.