Dr Sharman's survey to assess the CLL community's understanding of new treatments is now closed

Dr Sharman's survey to assess the CLL community's understanding of new treatments is now closed

Dr Jeff Sharman is curious to understand what people know / think they know about the new drugs Ibrutinib, Idelalisib and obinutuzumab. His latest blog was a 10 question survey (now closed) to gain CLL community feedback, the results of which he plans to use to help shape future his blog posts.

You can keep an eye on his site for new articles inspired by the survey responses here:

cll-nhl.com

Neil

Photo: Common Fringe Myrtle in flower - but how could you call this common?

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  • i would encourage ALL to take a few minutes to read, complete the survey, and then FILL IN THE COMMENTS SECTION.

    My comment is thus.

    You wrote and I quote :-

    ' Thanks for your time.'.!!!

    I would reply THANK YOU for your time explaining these new treatments to us patients.

    Dick

  • Link won't work???

  • Can you please explain my diagnosis. I was diagnosed in 1996 with CLL. I did not do treatment until 2003. I was then diagnosed in 2014 with SLL. I am now on Ibutrinib. My disease is B Cell Lymphoma CD 5 Positive Kappa Restricted B Cell Lymphoma. Thank you, n

  • Whoops, I did FCR in 2003.

  • CLL and SLL are essentially the same disease, the only difference being where the cancer primarily occurs.

    When most of the cancer cells are located in the bloodstream and the bone marrow, the disease is referred to as CLL, although the lymph nodes and spleen are often involved. When the cancer cells are located mostly in the lymph nodes, but not in the blood, the disease is called SLL. ( later in the clinical course, SLL may have raised B lymphocytes in about 30% of cases...usually indicates treatment )

    ncbi.nlm.nih.gov/pubmed/230...

    This is the first time I have heard of a change in diagnosis, but anything is possible...

    were your absolute lymphocyte count (ALC) blood levels normal, between FCR and Imbruvica (ibrutinib) ?

    ~chris

  • I was severely nuetropenic for at least a two years after treatment and then in about three years became more normal. My CBC were not out of control this go round but my lymph nodes were.

  • I clicked on link above and also on link in the email I received from Dr. Sharman's email. Both got me to his blog with the message: "Sorry, the page you were looking for in this blog does not exist". Went to Survey Monkey and their troubleshooting advice was to copy link and paste it into address box, but this didn't work for me either.

    Do you know what could be going wrong?

    Dick, perhaps you would know what could be tried differently since you got in?

    Thanks, Gene

  • I did the survey almost immediately and it all worked.

    It would appear that the blog page has now been removed or deleted.

    Perhaps there was some problems with the ' Survey Monkey ' link.

    You could try a direct contact via oregoncancer.com/, though I am sure he is a very busy man...

    Dick

  • I will try again periodically. No need to contact Dr. Sharman as I'm sure he will become aware of the situation and doesn't need extraneous messages bombarding him.

    Got the utmost respect for a man like him who cares for patients, heads research departments and organizations, directs clinical trials, writes articles, presents at worldwide conferences, and still has time to connect directly with the CLL/Lymphoma patients with his blog and a twitter account geared toward those communities, including stuff like creating a survey to help him understand what patients understand. (without mentioning he also competes in triathlons !!!!!) .Who does this? Not many, that's for sure!

    Long way of saying I have the utmost respect for his time too (especially when I compare the way he uses time to mine; I'm relaxing right now after completing my vigorous daily workload - checking the mail, walking the dog, and preparing dinner).

    GM

  • I did the survey yesterday morning, went back in my browser history and the link is broken now... so either there may be a problem with Blogger... or perhaps the survey.

    ~chris

  • I did it shortly after the post appeared.

    I think it was Survey Monkey if remember right. Maybe a problem with the survey questionnaire.

  • Seems that Dr Sharman has removed the survey blog from his site (which did use Survey Monkey), as it is no longer in the articles listed in his home page: cll-nhl.com/ . Thanks to those that responded and my commiserations to those that tried but were too late. There was no indication of a deadline in the original blog and I wonder if he had to pull the survey because some people abused the free format last question. (Years back, his site allowed comments, but sadly he had to disable that due to some people abusing the privilege.)

    It would have helped if there had been some explanation on the site...

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