Lymphedema in right leg with CLL
Gisygirl13 days ago
Has anyone had the chronic leg swelling problem? I have been on Imbruvica 3 years but for the past year or so, my right leg is just bigger...
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Beginning my clinical trial
Ninagram24 days ago
I have been on watch and wait since 2008 and the last 6 months my wbc is increasing at each appointment. I have been accepted into a trial ...
3 Replies4 Likes
I’m unclear what to think of my diagnosis
Blondielocks65a month ago
I’m new here and not clear about the diagnosis given on my Flow Cytometry, which classified me with atypical CLL, Mantle Cell Lymphoma, and ...
9 Replies1 Like
Imbruvica and Anxiety
Lana47a month ago
Does anyone take Imbruvica have anxiety issues? Does lowering the dosage help?
Need to talk & advice, WBC
grace2017a month ago
Hi I just wanted to read your posts they have helped me over the past year cope with my Dad having CLL. I feel for everyone that faces cance...
StasiaURos2 months ago
I am on Imbruvica for 3 years 12 trisomy doing well but I read that some of you are resistent and need additional Biologics after 3 years wi...
Ninagram2 months ago
I am waiting to be accepted into a clinical trial for my cll. just had a bone marrow biopsy and see my doctor Jan 16, hopefully I will be ac...
1 Reply1 Like
Falling Platelets with Venetoclax
prbild2 months ago
I started Venetoclax in October when Ibrutinib became ineffective after three years with the white blood cell count rising and the platelets...
Side effects with Imbruvica
Gisygirl2 months ago
I have been on Imbruvica for 3 years now and it appears to be working as my lab numbers are all in the normal range now. Even my platelets w...
Venetoclax and spleen enlarging
Barbshow2 months ago
My husband is on an ibrutinib venetoclax combo trial. His spleen reduced after initial few months on ibrutinib but after 4 doses of Ven, it ...
11 Replies2 Likes
Stevediam3 months ago
My father started venetoclax 1 week ago. He is a 71y/o, 17p CLL patient. He must be an inpatient at UPENN for fear of TLS for each ramp ...
Good News from the Doctor Venetoclax is working!
ReneeSusan4 months ago
I started my Venetoclax journey September 7th. A few bumps on the way up from 20mgs. to 400 mgs. And a few more bumps at 400mgs with lots of...
16 Replies6 Likes
CAR-T for CLL
calibella4 months ago
Has anyone gone through CAR-T therapy for CLL? I am looking at a trial in the US. I'm on my 4th treatment and have all the stinky stuff: ...
Anyone Know of or had Quadrant Testing?
Spacee5 months ago
Hubby's has CLL. His sister stage 4 lung cancer which is now in all her bones. WDAnderson just recently did the Quandrant Testing which sho...
Venetoclax and Fatigue
ReneeSusan5 months ago
I finished my 5 week ramp up on Venetoclax and the biggest issue is fatigue. I went shopping today for about an hour and had to leave the ma...
TOMORROW- Free CLL Educational Event
tclementi5 months ago
Join over 300 CLL patients and caregivers to hear the latest in treatment and research from world-renowned experts, including: Dr. Michael K...
Live From Stanford Med X This Weekend!
Our founders, Esther & Andrew will be presenting this weekend at the prestigious Stanford Medicine X conference on “precision medicine” and ...
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Join us for CLL Town Meeting on September 23
tclementi6 months ago
Blue Ribbon CLL Panel broadcasting for patients from Portland, OR Saturday Sept 23rd. Please join me - Patient Power founder Andrew Schorr i...
Mythbusters Is Tomorrow!
Important free educational program tomorrow! There are hundreds of companies researching better treatments for cancer. Some are for YOUR can...
ChristineAM6 months ago
I got a notice from Texas Oncology saying they are willing to help displaced patients in Texas continue their treatment until they can get b...
1 week until Final Clinical Trial Mythbusters Webinar!
Is there medical research going on that is open to you and could be the key to feeling better? That’s what a clinical trial can be, but many...
esplanade6 months ago
Has anyone used homeopathy while on imbruvica? My oncologist's take on this was somewhat vague. Neither a yes nor a no, but leaning more t...
Free CLL Event- join in-person or online!
Join CLL Global Research Foundation and Patient Power, in collaboration with The US Oncology Network, on Saturday, September 23 in Portland,...
Cd3136 months ago
It has officially been one year and five months since I was diagnosed with CLL. It has been mentally the most challenging year and I have h...
Pro lymphocytes 42% in blood report
venk_466 months ago
I am CLL patien and was Dxin feb 2013. Presently wait and watch
Recent blood report revealed the total WBC 1,73,000 and 52% lymphocytes ,...
fdshulman6 months ago
I was diagnosed with CLL, 15 months ago and am seeking A CLL support group in Brooklyn, N.Y. Any ideas? Fred
I'm 75 with cll. What can I do for my lack of energy and fatigue?
Questions now that I'm 3 wks into using ibrutinib
I'll be seeing my oncologist this week and will be asking her these questions. I'm curious to know what users of ibrutinib have to say a...
Corbins6 months ago
On Ibrutrinib 3 weeks now. No real side effects except serious fatigue and pretty consistent muscle and joint pain. What is one to take to...
Help us get to 1,000 Survey Responses
tclementi7 months ago
Please take a few minutes to participate in our Patient Power survey to let us know how we can do better for you. It really help us. If we c...
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