Beyond the Diagnosis: Surviving and Thriving with CLL / SLL

[lankisterguy]

Beyond the Diagnosis: Surviving and Thriving with CLL / SLL

by Heather Wolfe, MD

Assistant Professor, Department of Internal Medicine

Director of CLL Survivorship UT Southwestern Medical Center

Replay video here: cllsociety.org/beyond-the-d...

Powerpoint slides here: cllsociety.org/docs/Survivo...

Those living with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL / SLL) are living longer than ever. In fact, with all the new and improved treatment options, most will have a normal life expectancy and live for a very long time past the diagnosis. However, there are special considerations when it comes to preventative care and managing other aspects of health over the lifespan. In this session, we will discuss secondary cancer screenings, the importance of preventing infection, maintaining healthy bone density, monitoring for cardiovascular risks, and the significance of mental health.

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Note IMO- this is one of the best presentations I have seen for many years. Dr. Wolfe explains the concepts and trial results in very clear, easy to understand wording. - Len

[albie58]

Thanks Len!

It also showed a connection between CLL and osteoporosis.

[JerrysGirl3]

I've watched the first 2/3 of this and got so stressed. My doctor has never talked to me about more than half the things discussed here. I was scribbling notes so fast to have questions to ask him!!! In the poll when they asked about people's psychological help and support - 81.% of people were happy. I can't even get the people who say they'll help me find someone get back to me from my local oncologist office!!! And believe me I NEED HELP!! I'll say it again. My 13 hr r/t doctor part consists of a CBC, CBC with manual differential and a Reticulocyte count. He gets the results. Brings it up on his "graph" of my past and current labs and says "everything looks good". And I am done. Visit over. I am off my meds again (they took me off when I was in the hospital ) and I'm staying off til I speak to him because I think my lupus is having issues with the meds. My low blood sodium and ehrlichia infection issues were serious. I just don't know what to do. I read all the things you folks talk about here and I am clueless. I am 8 years out unmutated. That I know. I think I've been on Zanubrutinib a total of 8-10 weeks over two different times this last year before I got Covid and this past lupus diagnosis and outbreak. And as I'm writing I am breaking out in hives all over 🙁🥺.

[Mtk1]

Thanks Len, very informative.

[The-Man-with-a-Plan]

Thanks Lankisterguy. The presenter's conclusions/recommendations were succinct and straightforward.

Summary/Conclusions from PPT presentation. Key takeaways. All positive.

[neurodervish]

Thank you Len. This would be a great pinned post. I hope it can be added.

[AussieNeil Administrator in reply to neurodervish]

A link to this excellent overview of Surviving and Thriving with CLL/SLL has already been added early in our pinned post Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!

healthunlocked.com/cllsuppo...

Neil

[neurodervish in reply to AussieNeil]

Thank you 😍