Excellent CLL Video: Just wanted to share an... - CLL Support

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Excellent CLL Video

wizzard166 profile image
6 Replies

Just wanted to share an excellent video I just watched about CLL going forward in 2021. The two doctors in the presentation include my doctor from Dana Farber Dr. Jennifer Brown, and also the lead CLL Specialist from Columbia University. I felt it was a worthwhile watch for all of us.

Reflection on Living with CLL in 2020 & Hopes for 2021 | Patient Power

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wizzard166
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6 Replies
wizzard166 profile image
wizzard166

I don't think that link worked. I'll try thispatientpower.info/reflectio...

Solentgirl profile image
Solentgirl in reply towizzard166

Thanks Wizzard, very interesting . Teresa

wroxham-gb profile image
wroxham-gb

Thanks wizard.Sue

NaturalWaze profile image
NaturalWaze

This was great; thanks for posting. The 2nd dr is Nicole Lamanna, my specialist. It was helpful to hear her thoughts...

CLLBGone profile image
CLLBGone

I agree, an excellent video.

For those newly diagnosed this is an especially hopeful and encouraging 53 minute presentation that speaks about the various new treatments and their (mostly) minimal side efx.

The front end explores Covid and the Covid Vaccines and having CLL.

I like Dr Lamana's term for w&w (aka: watch & wait . . . . watch & worry); she prefers to call that period "active observation".

From the start of my diagnosis back in Aug 2014, until O&V treatment started in Oct 2019 and completed Dec 2020, I tracked all my labs on a spreadsheet and learned about the latest treatments.

My goal: keep things patient directed and current. I'm glad the good doctor put a name to what I was doing: active observation.

They also explore treatments for relapsed patients. All in all, a clear presentation.

wizzard166 profile image
wizzard166

I brought my choice of Specialist down to New York or Boston, and ended up with Dr Brown because my physician Brother said she led the nation in Genetic Research for our illness. He said that if there ever is a cure, that it will be through genetic manipulation. There are super great CLL Specialists in a number of top University and Medical School related Cancer Centers around the Country, and I feel fortunate to have ended up with mine. I'm sure you feel the same way.

I found the insight into the Vaccine helpful despite being somewhat disappointing; although, very much to be expected. With our very reduced immune systems, and vaccines working by stimulating the immune system to produce antibodies, it is only logical that any Vaccine isn't going to work as well with us as with regular people. Both doctors in the video still said that some help is better than no help, so take the vaccine. Their input on whether or not one of us is already in treatment and the use of the vaccine was also good to have.

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