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CLL Support

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All posts for February 2023

On calaquence and cold all the time

Has anyone experienced being extremely cold when taking calequence. I usually run hot,so this is not normal for me.Have been on the drug for about 90 days now

Has anyone experienced being extremely cold when taking calequence. I usually r...

gymbunny1

•2 years ago

13 Replies

Annoying phlegm

Hi Peeps! Hope we're all doing well. I'm going to see a GP about this, but I thought I'd toss it out here. Lately I've had trouble bringing up phlegm. It will...

Hi Peeps! Hope we're all doing well. I'm going to see a GP about this, but I tho...

Guffy

•2 years ago

34 Replies

A Great CLL Overview

https://www.patientpower.info/chronic-lymphocytic-leukemia/evening-with-the-docs-your-cll-questions-answered?ap=le3154&vhid=%5B%VHID%%5D

https://www.patientpower.info/chronic-lymphocytic-leukemia/evening-with-the-docs...

Wonderwoman23

•2 years ago

2 Replies

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VENCLEXTA’s impact

Hello everyone, I wanted to ask others their experience with VenClexta and memory loss. I am in month 10 and it is overwhelming the forgetfulness that I am...

Hello everyone, I wanted to ask others their experience with VenClexta and mem...

999990Bruno

•2 years ago

13 Replies

The Importance of Front-Loading Your Knowledge During the Early Journey of CLL/SLL April 12, 2023 Joanna M. Rhodes, MD, Northwell Health

The Importance of Front-Loading Your Knowledge During the Early Journey of CLL/SLL Wednesday, April 12, 2023 9:30 AM PT / 10:30 AM MT / 11:30 AM CT /...

The Importance of Front-Loading Your Knowledge During the Early Journey of CLL/S...

lankisterguy

Volunteer•2 years ago

1 Reply

What do I ask CLL specialist at first consult?

My local oncologist has been helpful, but it’s time to identify my CLL specialist. I’m so looking forward to a first meet tomorrow… What should I ask? Thank...

My local oncologist has been helpful, but it’s time to identify my CLL specialis...

MotherofDragonsUSA

•2 years ago

16 Replies

Temperature dysregulation and joint pain

I found some posts from 7 years ago that addressed dealing with temperature dysregulation and how to differentiate between menopausal symptoms and CLL...

I found some posts from 7 years ago that addressed dealing with temperature dysr...

Bloodwork

•2 years ago

9 Replies

zero neutraphils

My mum was rushed in to hospital on fri. Her neutraphils are very low and not responding to antibiotics. So likely not an infection and perhaps caused by...

My mum was rushed in to hospital on fri. Her neutraphils are very low and not re...

mouseygirl

•2 years ago

4 Replies

Blood testing

I am currently on (O&V) with one more (O) treatment march 20th. Blood counts have all been in normal range since starting treatment. I have blood draws every...

I am currently on (O&V) with one more (O) treatment march 20th. Blood counts hav...

Gradyboy

•2 years ago

18 Replies

Red lesions...big and small

I have been on Ibrutinub for over 4 years and my CLL treatment results have been positive for the greater part. Approximately 3 months ago, I have started to...

I have been on Ibrutinub for over 4 years and my CLL treatment results have been...

RichRoche

•2 years ago

17 Replies

eosinophilic folliculitis

As some of you may know I have had trouble with a rash that developed after a flu infection last November I got a all over by dy rash that actually last month...

As some of you may know I have had trouble with a rash that developed after a fl...

cartwheels

•2 years ago

5 Replies

Do you experience new lymph nodes after starting Acalabrutinib? + Issues with Plavix

Greetings Everyone, I want to share our latest experience with CLL and the treatment we started with Acalabrutinib. My mom started getting severely worse by...

Greetings Everyone, I want to share our latest experience with CLL and the trea...

paula_dae

•2 years ago

9 Replies

Acalabrutinib and covid vaccines

I have been on acalabrutinib for 2 months and doing very well. It has been about 6 months since I have had my last covid vaccine , and I am due for another. My...

I have been on acalabrutinib for 2 months and doing very well. It has been about...

Rrriver

•2 years ago

20 Replies

Insurance company refusing to pay out saying my Lymphoma is related to my CLL

I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I needed medical intervention. I was successfully treated with Alcalbrutinib and...

I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I ...

duncangarnham

•2 years ago

11 Replies

Transforming Outcomes in Chronic Lymphocytic Leukemia: Highlights from the ASH 2022 Meeting and Beyond

Transforming Outcomes in Chronic Lymphocytic Leukemia: Highlights from the ASH 2022 Meeting and Beyond In this Peer Exchange® expert...

Transforming Outcomes in Chronic Lymphocytic Leukemia: Highlights from the ASH 2...

lankisterguy

Volunteer•2 years ago

2 Replies

Low Platelet Count - 114,000

My doctor says he will typically address a patient with a low platelet count once that counts goes below 100. I am wondering what medications are typically...

My doctor says he will typically address a patient with a low platelet count onc...

markjeep51

•2 years ago

27 Replies

Any suggestions prior to starting V&O?

Hello all, I’m starting V&O in mid-March and wanted to ask the collective group for any (non-medical) suggestions to prepare for treatment. CT Scan & Bone...

Hello all, I’m starting V&O in mid-March and wanted to ask the collective group...

RufusHank104

•2 years ago

23 Replies

The meds needed to see off Covid

The president of an international health think-tank and ex professor of Harvard Med School gives an overview: what we already have, what's being developed, the...

The president of an international health think-tank and ex professor of Harvard ...

bennevisplace

•2 years ago

4 Replies

Has anyone had Increased Anxiety while taking Calquence?

I experienced extreme anxiety and depression while taking Calquence. I would notice a decrease in my general anxiety when I wasn't taking the drug during the 2...

I experienced extreme anxiety and depression while taking Calquence. I would not...

Hidden

•2 years ago

16 Replies

A Fib on Imbruvica how common is it

Have had a few bouts of A Fib . Some pretty severe. Is it common with Ibrutinib as a side effect ? Secondly can it result in increased risk of clots. Thanks.

Have had a few bouts of A Fib . Some pretty severe. Is it common with Ibrutinib ...

Timree

•2 years ago

8 Replies

CLL and Covid experiences

Hi, I am 65, have relapsed CLL after FCR treatment, made no antibodies to 6 Covid vaccinations. Otherwise I am healthy and physically very active. I'm...

Hi, I am 65, have relapsed CLL after FCR treatment, made no antibodies to 6 C...

skipro

•2 years ago

47 Replies

Interested in knowing if any CLL patients taking Calquence have developed neck cancer

Just need feedback

Mamouchi

•2 years ago

4 Replies

memory recall and venetoclax

Anybody experience memory recall issues while on Venetoclax? If so did it get better after treatment? Just asking, as my husband had never had a stellar memory...

Anybody experience memory recall issues while on Venetoclax? If so did it get be...

lisakc1

•2 years ago

25 Replies

Complex Karyotype (CK)

Hello all. I am uncertain if I fall into the group that has CK. Cab anyone provide an answer based on my profile information? Thanks FP

Hello all. I am uncertain if I fall into the group that has CK. Cab anyone provi...

Floydpup

•2 years ago

4 Replies

cramping

I’ve been on acalabrutinib for about two weeks and on Imbruvica for approximately 6 months before that. In the past couple of weeks I have been having cramping...

I’ve been on acalabrutinib for about two weeks and on Imbruvica for approximatel...

111853

•2 years ago

6 Replies

V&O treatment is over

So, after 366 days, 1,754 pills, 3 Neuprogen shots, 10 infusions, and one Covid diagnosis, I am done with my treatment. I don't know if there will be any...

So, after 366 days, 1,754 pills, 3 Neuprogen shots, 10 infusions, and one Covid ...

Dexterdoggg

•2 years ago

36 Replies

Vaccinated People Have Fewer Cardiac Events after COVID-19

In a study including data from almost two million individuals, COVID-19 vaccination seemed to have a protective effect against heart attacks, strokes, and...

In a study including data from almost two million individuals, COVID-19 vaccinat...

bennevisplace

•2 years ago

1 Reply

Newly diagnosed and shoulder pain

Hi, I was diagnosed with CLL this past summer and I'm currently on watch-and-wait. The Haematology Dept conclude I've probably had it for the past 3-4 years as...

Hi, I was diagnosed with CLL this past summer and I'm currently on watch-and-wai...

SAT_poet

•2 years ago

5 Replies

CLL and Parkinsons

Diagnosed CLL Npv. 2018, started Ibrutanib early 2019 and been on since, bloods good so far. Recently diagnised with mild form of Parkinsons. Anyone else with...

Diagnosed CLL Npv. 2018, started Ibrutanib early 2019 and been on since, bloods ...

Tsadams

•2 years ago

9 Replies

No grant money for CLL

I have been taking Imbruvica for CLL for four years with good success, and have been paying the ridiculously steep price for the drug with a combination of my...

I have been taking Imbruvica for CLL for four years with good success, and have ...

TheTraveler

•2 years ago

48 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2023

On calaquence and cold all the time

Annoying phlegm

A Great CLL Overview

VENCLEXTA’s impact

The Importance of Front-Loading Your Knowledge During the Early Journey of CLL/SLL April 12, 2023 Joanna M. Rhodes, MD, Northwell Health

What do I ask CLL specialist at first consult?

Temperature dysregulation and joint pain

zero neutraphils

Blood testing

Red lesions...big and small

eosinophilic folliculitis

Do you experience new lymph nodes after starting Acalabrutinib? + Issues with Plavix

Acalabrutinib and covid vaccines

Insurance company refusing to pay out saying my Lymphoma is related to my CLL

Transforming Outcomes in Chronic Lymphocytic Leukemia: Highlights from the ASH 2022 Meeting and Beyond

Low Platelet Count - 114,000

Any suggestions prior to starting V&O?

The meds needed to see off Covid

Has anyone had Increased Anxiety while taking Calquence?

A Fib on Imbruvica how common is it

CLL and Covid experiences

Interested in knowing if any CLL patients taking Calquence have developed neck cancer

memory recall and venetoclax

Complex Karyotype (CK)

cramping

V&O treatment is over

Vaccinated People Have Fewer Cardiac Events after COVID-19

Newly diagnosed and shoulder pain

CLL and Parkinsons

No grant money for CLL

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