Archive of latest CLLSA videos: Nick's Story... - CLL Support

CLL Support

22,474 members • 38,612 posts

Archive of latest CLLSA videos

10 years ago•1 Reply

Nick's Story: CLL diagnosis; impact and challenges for the family, and talking to his children

Nick shares with us: How he was diagnosed How hard it was to adjust to that diagnosis, How he gained information to help to do this, What this meant for his family, How he discussed this with his children, How others with CLL in support groups; in person and on-line gave him insights that made a difference, How the family lives with diagnosis and the impact of this on them, The support they have given him and the guilt. youtube.com/watch?v=rZnWuTE...

Jan's Story: CLL diagnosis, treatment & family, gaining information and meeting others with CLL

Jan shares with us: How her CLL diagnosis has altered her life, How the support of her family helped her through treatment, How joining CLLSA and meeting people in person and on-line who "get it" has been a great help, How family can help people learn to use the internet. Jan also wishes for improved access to specialists. youtube.com/watch?v=mggUyu9...

Chonette's story: CLL diagnosis, changing plans, treatment, the forming of CLLSA and reaching others

Chonette shares with us: How diagnosis 12 years ago changed her plans, How the internet brought her together with a small group of UK people with CLL in 2005 to start the CLL support Association; To help people find reliable information and meet others, How ten years on Chonette remains in full remission following treatment with a transplant five years ago and the CLLSA has grown to what it is now and how others can become involved with CLL Support youtube.com/watch?v=rYERsCP...

Andy's Story: CLL Diagnosis, his challenges of understanding and living on watch and wait.

Andy shares with us: What led to his CLL diagnosis, how he received the news, the conflicting message, how this impacted on Andy, his challenges living with symptoms while on watch and wait, understanding the concept, how it took time to be "reasonably comfortable" living with CLL & watch and wait and how if more information was made available to him earlier on it would have helped. youtube.com/watch?v=0ihcz7_...

Julia's Story: From CLL Diagnosis To A Doctorate Study Of How CLL People Use The Internet.

Julia shares with us: her experience of CLL diagnosis, first questions, the general doctor’s knowledge, how being selective when sourcing information is important, Julia discusses the importance of relationships and working together with her doctors, and following what's happening in the community. How this all lead to Julia’s interest into how people use on-line communities and information resources to support and inform each other, That not all have access, are able or confident using the internet and there is a large older group of CLL patients we don't know much about.

youtube.com/watch?v=9SP5OML...

Brian's Story: A Husband and Wife's CLL Diagnosis, Understanding and Coping Together.

Brian shares with us: how he learned of and reacted to his wife's diagnosis, how that affected him, what he understood and how they discovered what this meant. how they both gained their knowledge to put things in context, how learning and information networks were key, how on-line resources countered some of the isolation while they supported each other.

youtube.com/watch?v=lwmRR31...

Derek's Story: His CLL Diagnosis, 'Watch & Wait', Involving Others, Hopes and Activities

Derek shares with us: how he felt when he was diagnosed with CLL and his journey since then ,how he copes living with 'watch and wait' and involving family, friends and doctors, his hopes for the future and his activities that keep him busy.

youtube.com/watch?v=96OcZP3...

Arthur's Story: His CLL Diagnosis, Challenges, Treatments and Future Hope.

Arthur share with us: how he felt to be diagnosed with CLL, How this and CLL has challenged him, where he is now in his CLL treatment journey and what his hopes are for his coming years.

youtube.com/watch?v=BTZp1gH...

Celeste's Story: Living With CLL, Treatment & Trials, CLL Information & Support in Spain

Celeste shares with us: her insights if you are considering a clinical trial, how very few CLL information and support resources are available in Spain for a CLL patient and their family, how as an English speaker, on-line information and support resources have been a lifeline to aid her navigate and learn about CLL, what clinical trials and new treatments are available and how important her family has been in supporting her navigation.

youtube.com/watch?v=HDntuhP...

How Derek Became Involved In Supporting Others With CLL

Derek shares with us how he became involved with CLLSA: how meeting people with CLL at CLLSA meetings encouraged him to become involved with CLLSA as a trustee to increase resources, Derek outlines the types of fundraisers CLLSA are involved in and how members and the public are needed, how important it is to raise the profile of CLL, how this year there have been some great fundraisers that have generously raised funds to support CLL, If you wish to become involved you can contact Derek through the website: cllsupport.org.uk

youtube.com/watch?v=9rcj-pz...

Gwyneth Stafford Nurse Specialist Cambridge University Teaching Hospitals NHS Foundation Trust discusses when clinical trials may be first introduced to patients and if a trial is an option that should be considered. What, where, when and if patients fit trial criteria, How the Cambridge centre connects patients with other relevant trial centres. Gwyneth discusses the impact of greater attention and increased monitoring during trials versus greater commitment required from patients themselves to attend and participate in additional protocols during treatment in a trial,.

Q1) How many people are not familiar with the clinical trial process, how do you join a clinical trial?

Q2) Do you get better care when you are enrolled in a trial?

youtube.com/watch?v=wUIXXzE...

The role of the Nurse Specialist and clinical trials at the Cambridge CLL unit

Viideo webcast with slides sayansho.com/embed/iframe_c...

Gwyneth Stafford discusses clinical trials, challenges and rewards

Video webcast with slides sayansho.com/embed/iframe_c...

The challenges that CLL patients experience when managing their symptoms. A theme running through the video is the importance of keeping the medical team informed and working together to find strategies and support to reduce impact.

Q1) - What can you do to manage the symptoms of CLL?

Q2) - Can you give us some advice on managing nausea?

Q3) - Is it best for patients to be totally open about their lifestyle and what measures they are taking to manage their disease?

Q4) Is there anything CLL patients can do to proactively assist with their disease management, for example taking dietary supplements?

youtube.com/watch?v=zE6pAww...

Dr George Follows discusses the role of patients in aiding access to new medicines

youtube.com/watch?v=0sVLfM1...

healthunlocked.com/cllsuppo...

Dr George Follows discusses CLL treatment choices and side effects

youtube.com/watch?v=oiQrBTb...

healthunlocked.com/cllsuppo....

Dr George Follows discusses the role of CLL patients with oral therapies and new medicines.