UK CLL Forum, UKCLLFORUM

Welcome to the UK Chronic Lymphocytic Leukaemia Forum (UKCLLForum)

Welcome to the UK's only specific forum for the patients, families, friends and carers of those diagnosed with Chronic Lymphocytic Leukaemia (CLL).

About This Forum
The UK Chronic Lymphocytic Leukaemia Forum (UKCLLForum) has been created specifically for the patients, families, friends and carers of those diagnosed with CLL within the United Kingdom. We recognise the specific needs and wishes of these members and have designed this website to satisfy this criterion. We also appreciate that because this medical condition affects those generally over 55 years old, there may be a reluctance to use such a resource as this, and in addition, the British culture is a little more reserved than other countries. We would therefore strongly urge you to overcome these obstacles and subscribe to this forum.

Forums Structure
The forum is simple to use, utilising a fairly formal structure to enable new members to look through previous topics on specific subjects. For instance all posts relating to Shingles will be found in a thread specifically named Shingles.

We have even included an Off-Topic Board for those that would like to use this facility.

It is also easy to create a new topic by simply selecting the 'New Topic' icon.

Login
We have had to include a login facility to prevent unauthorised use by spammers or people trying to sell specific products. We all know that this can be a little inconvenient, but I would assure you that we have kept the required details to an absolute minimum. We will therefore only ask you for:

  • A username.
  • Your First and Second name, but there is no reason why these can't be the same as your username or even an alias.
  • Your sex.
  • Your email address. This is necessary so that we can mange the forum and prevent inappropriate use and provided details of threads posted to the forum.

Confidentiality
Please be assured that we will not under any circumstances publish your details or share them with any other party. We want the members that use this forum to feel fully protected and we have taken preventative measures to ensure this.

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Finally, it will take time for this forum to establish itself within the UK CLL community, we therefore ask for your continued support in any way that you can.

Latest post on the UK Chronic Lymphocytic Leukaemia Forum.

View the most recent 20 posts.

Topic Made On: Apr 17, 2019 11:31am
Admin

Offline
Gender: Male
Posts: 98
Thank you to everyone that has participated in the 2019 CLL Tracker survey, to date there has been 114 respondents. The latest results are published at www.clltracker.co.uk/results2019

A brief summary of some of the key points from this year’s survey:
• The most common age of diagnosis is 55 to 59 years.
• The longest survivor (Years Since Diagnosis) is 33.9 years. A patient who has received treatment and is IgVH mutated.
• Fatigue, Enlarged Lymph Nodes and Frequent Infections are the most common Symptoms at Diagnosis.
• A slightly elevated white blood cell count is often seen at diagnosis.
• Most CLL'ers are diagnosed with a normal HB and Platelet count.
• IgVH Mutational Status and Chromosome Abnormalities are still not known by a significant number of CLL’ers.
• Ibrutinib is now the most common current treatment.
• Patients see a much lower occurrence of complications with Ibrutinib.

The full results can be viewed at www.clltracker.co.uk/results2019

Whist some of the results are already significant, others need more respondents to be significantly valid. I would therefore like to request your participation (a few minutes if you have not received treatment, and only 10 minutes if you have received treatment).

Regards

Robert
UK, Bournemouth. Dx May 2000. Age 63.
2002 Oral Fludarabine.
June 04 and Jan 05 4 weeks of Rituxan.
Oct 05/Feb 06 monthly Rituxan and Chlorambucil.
July/Dec 08 RFC.
June 2012 Bendamustine and Ofatumumab, but changed to Rituxan.
2014 to date IVIG.
Jan 2017 Ibrutinib.
Trisomy 12 (NOTCH 1 and SF3B1 unmutated), IgVH mutated, ZAP70 -ve, CD38 -ve.




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