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CLL Support

22,532 members • 38,709 posts

All posts for February 2023

Fundamentally, what are you?

Ever wondered what you're made of, at the level of the individual cell and its component parts? And, those parts being "dead", what does it take for cells to...

Ever wondered what you're made of, at the level of the individual cell and its c...

bennevisplace

•1 year ago

3 Replies

Universal Credit and CLL

I am wondering what the situation is here for with Universal Credit and working in the UK if you are on watch and wait but get very tired very quickly and you...

I am wondering what the situation is here for with Universal Credit and working ...

Research123

•1 year ago

3 Replies

‘Bond villain’ DNA could transform cancer treatment, scientists say

Discovery that extrachromosomal DNA act as cancer-causing genes seen as breakthrough that could lead to new therapies...

Discovery that extrachromosomal DNA act as cancer-causing genes seen as breakthr...

zaax

•1 year ago

1 Reply

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I'd like to hear others experiences with AIHA.

I'm currently being treated for autoimmune hemophilic anemia, I'd like to hear how others who have had to deal with this made out, what treatments they had,...

I'm currently being treated for autoimmune hemophilic anemia, I'd like to hear h...

johnliston

•1 year ago

14 Replies

Blood Negative MRD

History: My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with...

History: My husband learned he had CLL in March 2022 (he is muted TP53 and 17p d...

spi3

•1 year ago

19 Replies

Come and Go

Curious if anyone has had this experience. One day I suddenly felt something behind my ear about 2 inches on skull or in my head. Within 24 hours it hurt so...

Curious if anyone has had this experience. One day I suddenly felt something be...

Rico49

•1 year ago

24 Replies

Very true

I can relate to this.

sun_flower

•1 year ago

2 Replies

allergies

Hello Everyone, I am wondering whether more of you have had a problem with allergies since your CLL began and since you have started treatment with Ibruntinib...

Hello Everyone, I am wondering whether more of you have had a problem with alle...

Provence

•1 year ago

35 Replies

Sensitive gums and joint pain

Hi all, I was diagnosed with CLL about 4 1/2 years ago, have been on W&W since then. Just after Christmas, I had an ache in my right side below my ribs that...

Hi all, I was diagnosed with CLL about 4 1/2 years ago, have been on W&W since t...

Mango1957

•1 year ago

13 Replies

BBC1 South East Today Headline News - Evusheld Refusal by NICE

So sad to see and hear of blood cancer patients entering their 4th year of shielding, with the announcement that NICE will not be funding Evusheld to some...

So sad to see and hear of blood cancer patients entering their 4th year of shiel...

Lady_Lymington

•1 year ago

21 Replies

Venetoclax first day- nothing happening?

Hi- My father just started venetoclax in the hospital. How do we know if it is working? His WBC count went up from yesterday and all of his kidney numbers...

Hi- My father just started venetoclax in the hospital. How do we know if it is ...

jt882

•1 year ago

8 Replies

SCIg Treatment

May have to begin this treatment. Wondering if anyone has been through this and what your experience was. Easy to do? Feel better? Able to travel? I'm in...

May have to begin this treatment. Wondering if anyone has been through this and ...

Cookers

•1 year ago

6 Replies

BLOOD PRESSURE PROBLEMS

Does anyone have trouble taking imbruvica in relation to high blood pressure.We know that this medication bumps up blood pressure a lot If anyone is suffering...

Does anyone have trouble taking imbruvica in relation to high blood pressure.We ...

studi

•1 year ago

6 Replies

Update and the end of Ibrutinib

Taking Ibrutinib since 2015 and ends 12/22 after tough end of the year 2022 chronically what was happened : start with strong a strong flu in mid...

Taking Ibrutinib since 2015 and ends 12/22 after tough end of the year 2022 chr...

guyhighlander

•1 year ago

2 Replies

One Year Anniversary on Acalabrutinib (Calquence)

I have reached my one year anniversary being on Acalabrutinib!…..how quickly that year has gone 😅. I’m so happy to report that my most recent bloodwork taken...

I have reached my one year anniversary being on Acalabrutinib!…..how quickly tha...

MorganNL

•1 year ago

12 Replies

Don't know how it happened, but I have Covid.

Last Thursday (February 9th) I woke up hoarse...didn't feel bad but sounded horrible. Since I am super careful and go almost nowhere, I assumed it was a mold...

Last Thursday (February 9th) I woke up hoarse...didn't feel bad but sounded horr...

Lisa-1959

•1 year ago

16 Replies

Forehead lump biopsy

I'm hoping someone can shine some light on my recent experience. I had a lump on my forehead that the dermatologist removed last week. The initial thought was...

I'm hoping someone can shine some light on my recent experience. I had a lump on...

kimiD

•1 year ago

16 Replies

Concern about getting more Covid-19 vaccines.

I was diagnosed under 2 years ago. I guess I’ve had it since 2007. Just wondering about getting more Covid-19 vaccines. I have believed it is a good idea to...

I was diagnosed under 2 years ago. I guess I’ve had it since 2007. Just wonderin...

Y5cc8j

•1 year ago

8 Replies

Covid vaccine frequency

Do I now stop or delay more covid vaccines or how often to get vaccines now? Im 79 with CLL for years. Luckily I have not had Covid yet. I have taken every...

Do I now stop or delay more covid vaccines or how often to get vaccines now? Im...

Bobsterguy

•1 year ago

21 Replies

Melanoma & Vitamin D

https://journals.lww.com/melanomaresearch/Abstract/9900/Regular_use_of_vitamin_D_supplement_is_associated.51.aspx

https://journals.lww.com/melanomaresearch/Abstract/9900/Regular_use_of_vitamin_D...

Splash24

•1 year ago

3 Replies

Evusheld turned down by NICE

NICE have made their decision to not make Evusheld available on NHS as there is insufficient evidence of its effectiveness against current variants. Well I...

NICE have made their decision to not make Evusheld available on NHS as there is ...

Eucalyptus22

•1 year ago

20 Replies

Evusheld: Is it worth having now in Australia?

Finally Evusheld is available. But is it of any use now considering the new variants?

Finally Evusheld is available. But is it of any use now considering the new var...

Biker7

•1 year ago

2 Replies

Richter’s Transformation

Can a biopsy give false results without removing the previous treatment? My opinion is yes, but that's just my opinion. Lately I am seeing many people with...

Can a biopsy give false results without removing the previous treatment? My opin...

Priss69

•1 year ago

2 Replies

Timelines

Hi all, hope you're all having a great week? Just wondered, following my diagnosis in Dec 22 how long will it be before I will be introduced to an oncology...

Hi all, hope you're all having a great week? Just wondered, following my diag...

The_simple_life

•1 year ago

14 Replies

CAR-T availability in Australia

can anyone enlighten me on the current status of CAR-T availability for CLL patients in Australia? I’m aware it wasn’t available for CLL after a small trial a...

can anyone enlighten me on the current status of CAR-T availability for CLL pati...

Billarina

•1 year ago

3 Replies

High Vitamin D level

Hi all. I am still waiting to get into the Hematologist for an assessment Meanwhile had my cytometry drawn today. Meanwhile, my vitamin D -25 has come back...

Hi all. I am still waiting to get into the Hematologist for an assessment Meanwh...

Horsechestnut

•1 year ago

25 Replies

ADA Accomodations for CLL at Work, anyone?

Good morning, I am living in US & a newbie to CLL (diagnosed 11/03/2022) and still sorting things out. I'm stage 0, watch and wait. My main symptom is...

Good morning, I am living in US & a newbie to CLL (diagnosed 11/03/2022) and...

esn1967

•1 year ago

12 Replies

2 Questions about IVIG

Hi folks, Just wondering: how often should one have their IG numbers checked? Also, if a person were to need/get an IVIG infusion, does that mean they’d...

Hi folks, Just wondering: how often should one have their IG numbers checked? ...

DRM18

•1 year ago

13 Replies

Recent research report

one section of a recent research report covered CLL and it included several topics including the favorable results of vitamin D. Now I can’t find the...

one section of a recent research report covered CLL and it included several topi...

BobTerry62

•1 year ago

2 Replies

Zanubrutinib journey

I lurk on this site and gather information from time to time ... thought it was time to contribute! I started Zanubrutinib/BGB3111 in Jul 2016. Good...

I lurk on this site and gather information from time to time ... thought it was...

jorum

•1 year ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2023

Fundamentally, what are you?

Universal Credit and CLL

‘Bond villain’ DNA could transform cancer treatment, scientists say

I'd like to hear others experiences with AIHA.

Blood Negative MRD

Come and Go

Very true

allergies

Sensitive gums and joint pain

BBC1 South East Today Headline News - Evusheld Refusal by NICE

Venetoclax first day- nothing happening?

SCIg Treatment

BLOOD PRESSURE PROBLEMS

Update and the end of Ibrutinib

One Year Anniversary on Acalabrutinib (Calquence)

Don't know how it happened, but I have Covid.

Forehead lump biopsy

Concern about getting more Covid-19 vaccines.

Covid vaccine frequency

Melanoma & Vitamin D

Evusheld turned down by NICE

Evusheld: Is it worth having now in Australia?

Richter’s Transformation

Timelines

CAR-T availability in Australia

High Vitamin D level

ADA Accomodations for CLL at Work, anyone?

2 Questions about IVIG

Recent research report

Zanubrutinib journey

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