Posts - CLL Support | HealthUnlocked

CLL Support

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All posts for September 2020

Good news 😊

Just had my monthly telephone consultation with my consultant and after 9 months on Ibrutinib and 9 weeks now on venetoclax my WBC and lymphocytes are normal....

Just had my monthly telephone consultation with my consultant and after 9 months...

Jooby59

•4 years ago

30 Replies

COVID - Where contracted data

Following on from yesterdays announcements. on COVID, I suspect that the UK medical advisors to the government have access to an array of data as to where...

Following on from yesterdays announcements. on COVID, I suspect that the UK medi...

RobertCLL

•4 years ago

14 Replies

CLL Society Oct. 10th Patient Education Forum early management, novel therapies, MRD, COVID-19, clinical trials, CAR-T, vaccines, Richter's

CLL Society Global Virtual Patient & Caregiver Educational Forum October 10! The BIG event! CLL Society's first-ever Virtual Global Patient Educational...

CLL Society Global Virtual Patient & Caregiver Educational Forum October 10! T...

bkoffman

CLL CURE Hero•4 years ago

7 Replies

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Base of skull pain?

Hi all!!! I’m so comforted when I come here and read of others’ journeys. I feel so less alone. 🙌 So here’s my question....my bf has been taking imbruvica...

Hi all!!! I’m so comforted when I come here and read of others’ journeys. I fee...

Beefcakesgirl

•4 years ago

5 Replies

Ibrutinib for chronic lymphocytic leukemia in the setting of respiratory failure from severe COVID‐19 infection: Case report and literature

Ibrutinib for chronic lymphocytic leukemia in the setting of respiratory failure from severe COVID‐19 infection: Case report and literature review . I have...

Ibrutinib for chronic lymphocytic leukemia in the setting of respiratory failure...

velderve

•4 years ago

10 Replies

UPDATE 9/22/20

Checked out for a couple months and would love to be back getting daily emails from healthunlocked but not sure how to?? Anyway latest blood work Absolute...

Checked out for a couple months and would love to be back getting daily emails f...

haposwald

•4 years ago

2 Replies

Join Leukaemia Care's Webinar - Navigating the pathway of lymphoma and leukaemia - supporting you to self-manage your condition

There are various stages in an individual's experience of lymphoma and leukaemia that present as changes and challenges. Join them as they discuss when these...

There are various stages in an individual's experience of lymphoma and leukaemia...

Jm954

Administrator•4 years ago

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Interesting article on venetoclax obinutuzumab and Ibrutinib trial

https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-lymphocytic-leukemia/chronic-leukemia-cll-triple-therapy-phase-2-trial

https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-lymphocytic-leuk...

Research123

•4 years ago

3 Replies

For anyone new...

Today is my cancerversary. I found out I had CLL 8 years ago. But, the reason I celebrate today is because when I got the news and stayed up all night...

Today is my cancerversary. I found out I had CLL 8 years ago. But, the reason I ...

CoCoLuna11

•4 years ago

53 Replies

Can I continue to swim

Hi there since my diagnosis with CLL I have steered clear of my local swimming pool. As a result of Covid new protocols are now in place, i.e. a maximum of 10...

Hi there since my diagnosis with CLL I have steered clear of my local swimming p...

Happygarden

•4 years ago

19 Replies

Venetoclax and Lemons /Lemonade? Is it safe? check original post (Lemons/Lemonade?)

Just wanted to know if anyone had any interactions with Lemons/Lime? And about fatigue and respiratory issues? I'm starting today.

Just wanted to know if anyone had any interactions with Lemons/Lime? And about f...

Dorito

•4 years ago

4 Replies

Lemons /Lemonade?

Hi. I'm starting Venetoclax. I love orange juice and lemon juice. Most of the time I make them at home. Is there anything known about these two not being...

Hi. I'm starting Venetoclax. I love orange juice and lemon juice. Most of the ti...

Dorito

•4 years ago

8 Replies

BTK inhibitors and IgG levels

My husband had been on acalabrutinib for a few months. His IgG level has dropped from 7.4 ( low normal ) to 6.4 ( low ). His ALC has risen significantly but...

My husband had been on acalabrutinib for a few months. His IgG level has dropped...

ikahan

•4 years ago

2 Replies

CLL for 6 years, 80 years old!

My husband has CLL, AND HAS HAD THREE issues with fluid in his lungs, and the last one was very serious , with infection! So they stopped Imbruvica, and have...

My husband has CLL, AND HAS HAD THREE issues with fluid in his lungs, and the la...

Dummer70

•4 years ago

1 Reply

PATIENT RECRUITMENT STARTS FOR THE INTERNATIONAL PRO-SID STUDY EVALUATING PANZYGA® FOR PRIMARY PROPHYLAXIS FYK

http://tdailynews.net/story-z12102610

velderve

•4 years ago

1 Reply

Revolution of Chronic Lymphocytic Leukemia Therapy: the Chemo-Free Treatment Paradigm

February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial...

February 2020 A long paper and too much information to be able to summarise in t...

Jm954

Administrator•4 years ago

9 Replies

FAR infrared and CLL

I'm a newbie to this site; Does anyone have info as to what frequency of FAR infrared may be damaging to CLL patients? Thanks

I'm a newbie to this site; Does anyone have info as to what frequency of FAR inf...

wnrtakeall

•4 years ago

15 Replies

Second-Generation BTK Inhibitors Hit the Treatment Bullseye With Fewer Off-Target Effects

August 16, 2020 Fewer off-target effects mean second-generation BTK inhibitors offer less cardiotoxicity, fewer AEs that result in stopping treatment and...

August 16, 2020 Fewer off-target effects mean second-generation BTK inhibitors o...

Jm954

Administrator•4 years ago

17 Replies

Teeth pain

Dears, I am on Ibrutinib for 3 months now and besides losing 17kg, I also got several issues - at the same time - with my teeth; between pain, infection and...

Dears, I am on Ibrutinib for 3 months now and besides losing 17kg, I also got se...

AshGS

•4 years ago

11 Replies

WBC over 200.000

Hello guys, I’m a general practitioner doctor from Turkey. I’ve been following this forum for a while, since my mom(she is 60 y.o.) was diagnosed with CLL 4...

Hello guys, I’m a general practitioner doctor from Turkey. I’ve been following...

cllmeonmycellphone

•4 years ago

31 Replies

CAR-T next week

Hi all I know it’s been way too long between updates but, after 4 wonderful years on venetoclax, I had to come off that drug in December with significant...

Hi all I know it’s been way too long between updates but, after 4 wonderful year...

DebinOzinLondon

•4 years ago

37 Replies

I’m always tired!

The chronic fatigue is really getting to me. I’m stage one, with running an 130 acre farm, plus working 40 + hours a week. Is the anything I can do to give me...

The chronic fatigue is really getting to me. I’m stage one, with running an 130 ...

Kimhice

•4 years ago

6 Replies

Where is imbruvica made

Is Imbruvica made in China

Hidden

•4 years ago

43 Replies

Younger, Fit Patients With CLL: Goal Remains Undetectable Minimal Residual Disease and Time-Limited Therapy

This article looks at the interim analysis of E1912, a U.S. randomized phase III trial comparing ibrutinib/rituximab, followed by ibrutinib to disease...

This article looks at the interim analysis of E1912, a U.S. randomized phase III...

Jm954

Administrator•4 years ago

20 Replies

Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study

It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL....

It has been known for some time that FCR can produce very long remissions (perha...

Jm954

Administrator•4 years ago

6 Replies

Acalabrutinib Ibrutinib sun/tan

Hi, Please everyone who is on ibrutinib or Acalabrutinib and who has developed allergy reaction to sun or just have normal tan please respond. Thanks, Mik

Hi, Please everyone who is on ibrutinib or Acalabrutinib and who has developed a...

Mik_

•4 years ago

9 Replies

Neulasta effect -wbc and ldh up too high

Hi, Just wonder if anyone has WBC shoot up after Neulasta. 3 days after chemo and Neulasta shot, Wbc was still at 1.6 and normal LDH. But 10 days after...

Hi, Just wonder if anyone has WBC shoot up after Neulasta. 3 days after chemo a...

writepa

•4 years ago

11 Replies

Itching

Does anyone have a problem with itchy arms? Lately this is everytime I take a shower,drives me crazy.

Does anyone have a problem with itchy arms? Lately this is everytime I take a sh...

dcfrey645

•4 years ago

36 Replies

Side effects of RCD Chemotherapy

I have undergone 2 cycles of rituximab, cyclophosphamide and dexamethasone (RCD) chemotherapy. This alternative therapy was decided by treating Hematologist...

I have undergone 2 cycles of rituximab, cyclophosphamide and dexamethasone (RCD)...

CLL4

•4 years ago

2 Replies

Has this happened to anyone?

I finished 6 cycles of B&R treatment 3 months ago, all my numbers improved and my Oncologist said I was now in remission. I feel great except 5 days ago my...

I finished 6 cycles of B&R treatment 3 months ago, all my numbers improved and m...

laldoroty

•4 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2020

Good news 😊

COVID - Where contracted data

CLL Society Oct. 10th Patient Education Forum early management, novel therapies, MRD, COVID-19, clinical trials, CAR-T, vaccines, Richter's

Base of skull pain?

Ibrutinib for chronic lymphocytic leukemia in the setting of respiratory failure from severe COVID‐19 infection: Case report and literature

UPDATE 9/22/20

Join Leukaemia Care's Webinar - Navigating the pathway of lymphoma and leukaemia - supporting you to self-manage your condition

Interesting article on venetoclax obinutuzumab and Ibrutinib trial

For anyone new...

Can I continue to swim

Venetoclax and Lemons /Lemonade? Is it safe? check original post (Lemons/Lemonade?)

Lemons /Lemonade?

BTK inhibitors and IgG levels

CLL for 6 years, 80 years old!

PATIENT RECRUITMENT STARTS FOR THE INTERNATIONAL PRO-SID STUDY EVALUATING PANZYGA® FOR PRIMARY PROPHYLAXIS FYK

Revolution of Chronic Lymphocytic Leukemia Therapy: the Chemo-Free Treatment Paradigm

FAR infrared and CLL

Second-Generation BTK Inhibitors Hit the Treatment Bullseye With Fewer Off-Target Effects

Teeth pain

WBC over 200.000

CAR-T next week

I’m always tired!

Where is imbruvica made

Younger, Fit Patients With CLL: Goal Remains Undetectable Minimal Residual Disease and Time-Limited Therapy

Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study

Acalabrutinib Ibrutinib sun/tan

Neulasta effect -wbc and ldh up too high

Itching

Side effects of RCD Chemotherapy

Has this happened to anyone?

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