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CLL Support

23,253 members•39,948 posts

All posts for September 2020

Need advice on Acalabrutinib will start treament next month

My oncologist had taken me off of Ibrutinib after 10 weeks due to untolerable side everyday. I was advised to rest for one month and will start...

My oncologist had taken me off of Ibrutinib after 10 weeks due to untolerable s...

•4 years ago

On ibrutinib, great numbers but FATIGUE

I’m 47, on Ibrutinib for 17 months (initially with Rituxan) and was incredibly fortunate to have my numbers back in totally normal range within a few months. I...

I’m 47, on Ibrutinib for 17 months (initially with Rituxan) and was incredibly f...

•4 years ago

Ibrutinib to acalabrutinib

Looking for insight here please. I started treatment for CLL last November; 280 mg daily. My numbers went down pretty quickly. I had headaches at first but...

Looking for insight here please. I started treatment for CLL last November; 280...

•4 years ago

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CLL Treatments Today: What Should I Know? October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time

https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern...

https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8ac...

Volunteer•4 years ago

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REsults from CT scan

I have been diagnosed in August 2020 with CLL. When I went for my CT scan the Dr sitting in on the appointment and I were talking and I was saying about having...

I have been diagnosed in August 2020 with CLL. When I went for my CT scan the Dr...

•4 years ago

Today is World Leukemia Day

Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By...

Dear friends Today, patients, patient groups, clinical groups and organisations...

Founder Admin•4 years ago

A little lighthearted pandemic humor....

I hope this isn't TOO inappropriate to post, but while a lot of us CLLers remain in self-imposed lockdown, I wanted to share a two-minute stop-motion animated...

I hope this isn't TOO inappropriate to post, but while a lot of us CLLers remain...

•4 years ago

Avoid The Lifetime Penalty

Hopefully this information helps those in the US, over 65, avoid some of the trauma and drama I faced when trying to enroll in a Medicare Supplemental Plan....

Hopefully this information helps those in the US, over 65, avoid some of the tra...

•4 years ago

Should I Start Acalabrutinib Now or Later

Hello All, I am looking for a little feedback. I was diagnosed with CLL in March of 2018. In December 2019 my V.A. Oncologist prescribed two Ibrutinib 140mg...

Hello All, I am looking for a little feedback. I was diagnosed with CLL in March...

•4 years ago

Well Fancy That!

Just for fun, a silly quiz for you. PREAMBLE It's well known that every cell in our bodies contains coiled-up strands of DNA, the code of life. Cells are very...

Just for fun, a silly quiz for you. PREAMBLE It's well known that every cell in ...

•4 years ago

Interesting article on venetoclax, ibrutinib and obinutuzumab combination

https://www.targetedonc.com/view/obinutuzumab-triplet-achieves-deep-remissions-in-chronic-lymphocytic-leukemia Interesting article on venetoclax, ibrutinib and...

https://www.targetedonc.com/view/obinutuzumab-triplet-achieves-deep-remissions-i...

•4 years ago

Ibrutinib

I am 64 years old was diagnosed with CLL on 3rd March and started taking Ibrutinib from 3rd June. I continue taking Ibrutinib. During March/April/May I...

I am 64 years old was diagnosed with CLL on 3rd March and started taking Ibrutin...

•4 years ago

Day sweats

on ibrutanib 2 years good results but have started sweating profusely during the day. anybody else have similar problem?

on ibrutanib 2 years good results but have started sweating profusely during th...

•4 years ago

U.S. advisory group lays out detailed recommendations on how to prioritize Covid-19 vaccine

I think we can expect similar priorities for the vaccine in UK and around the word. A new US report aims to prioritize groups to receive Covid-19 vaccine...

I think we can expect similar priorities for the vaccine in UK and around the wo...

Administrator•4 years ago

End of suspense! Here is Dr. Koffman's ASCO 2020 "Top Pick" #1!

CLL Society's ASCO 2020 Conference Coverage. End of suspense! Here is Dr. Koffman's ASCO Top Pick #1! Dr. Koffman highlights the CLL 14 Trial, a study looking...

CLL Society's ASCO 2020 Conference Coverage. End of suspense! Here is Dr. Koffma...

CLL CURE Hero•4 years ago

Alternative sweetners

Never heard that alternative sweetners are not good for people with CLL is this true or is it a myth?

Never heard that alternative sweetners are not good for people with CLL is this ...

•4 years ago

Lymph nodes or something else?

Hello All, I have 5 lumps on the right side in my groin area. I am assuming they are the lymph nodes for that area. They are uncomfortable with slight pain....

Hello All, I have 5 lumps on the right side in my groin area. I am assuming they...

•4 years ago

Newly diagnosed and hoping for a bit of advice

Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm...

Hi, Thankyou to all those who have put so much into this site. Its been a huge h...

•4 years ago

Switching Venetoclax from morning to evening

I have been on Venetoclax for 6 weeks now and am on 400mg daily. Had a few side effects which are now lessening but nausea remains. Usually starts up about 2...

I have been on Venetoclax for 6 weeks now and am on 400mg daily. Had a few side ...

•4 years ago

STARTING VENCLEXTA - QUESTIONS

Doctor has given go ahead to begin Venclexta but I read that for at least 2 days before to be very well hydrated, drink at least 1.5 to 2 liters. Because of...

Doctor has given go ahead to begin Venclexta but I read that for at least 2 days...

•4 years ago

Help the CLL Society find out what CLL patients & caregivers know and still "yearn to learn" about MRD testing + Limited Duration Therapies

CLL Society 2020 Patient Survey: Help the CLL Society find out what our CLL patients and their caregivers know and still "yearn to learn" about MRD testing...

CLL Society 2020 Patient Survey: Help the CLL Society find out what our CLL pati...

CLL CURE Hero•4 years ago

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