Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for July 2021

Is a short 2 day trip away, unsafe for us?

Hi All, I have made arrangement to go on a short 2 day Hotel trip in two weeks, to one of the more safe area's of Scotland. Has anyone else done or is going...

Hi All, I have made arrangement to go on a short 2 day Hotel trip in two weeks, ...

Vindicatrix

•3 years ago

15 Replies

Did I get that right???

The substitute Health Secretary Sajid Javid announced today that, as of August 16th, anyone who's told (by the App one assumes) they've been in contact with a...

The substitute Health Secretary Sajid Javid announced today that, as of August 1...

bennevisplace

•3 years ago

7 Replies

Freedom day could come at a high price for the clinically vulnerable by Sean O'Neil CLL Patient and UK Times Newspaper Chief Reporter

As Boris Johnson was declaring Freedom Day yesterday, I was flying back to London from a weekend in the Highlands. Just like the prime minister I had asked...

As Boris Johnson was declaring Freedom Day yesterday, I was flying back to Londo...

Jm954

Administrator•3 years ago

13 Replies

Want to take advantage of all our features? Just log in!

STELLAR Trial in the UK for Richter's

Just a reminder that there is a UK trial at 17 centres around the UK for patients who have a Richter's transformation of their CLL. The usual treatment for...

Just a reminder that there is a UK trial at 17 centres around the UK for patient...

Jm954

Administrator•3 years ago

1 Reply

How good has been anyone’s experience of cll team at the Leeds St James hospital in the UK?

Treatment at St James hospital Leeds

Barney2866

•3 years ago

6 Replies

ALERT!!! SCAM Email requesting you apply for a COVID Digital Passport is being received by members

There is a fake COVID-19 digital passport scam being circulated via email to people in the UK but it could happen worldwide. It says: Apply Now For Digital...

There is a fake COVID-19 digital passport scam being circulated via email to peo...

Jm954

Administrator•3 years ago

15 Replies

Ibrutinib

Hi, Are there people who use Ibrutinib and are on 1 capsule 120 mg every day and fell well?

Hi, Are there people who use Ibrutinib and are on 1 capsule 120 mg every day and...

Green202

•3 years ago

7 Replies

Acalabrutinib headaches - on and off all day?

My husband started Acalabrutinib in mid April - 2 pills daily - and has been having lots of headaches…at random times. In the morning (coffee helps), in the...

My husband started Acalabrutinib in mid April - 2 pills daily - and has been hav...

OaktownA

•3 years ago

Be the first to reply

Ibrutinib or Acalabrutinib

Dx 2016 with cll. Male 75 years 11q deleted. One BR treatment in March 2019.Adverse reaction hospitalised for 50 days renal failure. But recovered numbers...

Dx 2016 with cll. Male 75 years 11q deleted. One BR treatment in March 2019.Adve...

Joffre1

•3 years ago

7 Replies

Time to start treat?

I was diagnosed in 2014, after quiet W & W 7 years, almost forget I am a CLL patient. In the last month I suddenly feel very tired and lymph nodes grew. There...

I was diagnosed in 2014, after quiet W & W 7 years, almost forget I am a CLL pat...

Sheng

•3 years ago

18 Replies

Call the interpreter !

Call the interpreter ! zap 70+ CD 38+ del 11 q del 13 q IGVH mutation indeterminate ??? Tell me what I got here ! Actually after CLL...

Call the interpreter ! zap 70+ CD 38+ del 11 q del 13 q IGVH mutation ind...

janvog

•3 years ago

4 Replies

Has anyone heard of the Dr SEBI diet ?

I got this on a Google search and wondered if it's any good and if anyone has any experience of it (or if it's just some money making scheme)? Thanks

I got this on a Google search and wondered if it's any good and if anyone has an...

Research123

•3 years ago

5 Replies

Best face masks

There was a post on safest face masks but I can’t find it . Can anybody help.

AnneeNor

•3 years ago

14 Replies

Working, CLL and Covid

Hi, I am about to start a new teaching position after a career break of two years. Suddenly occupational health are saying I have to undergo a Covid risk...

Hi, I am about to start a new teaching position after a career break of two year...

Kenn123

•3 years ago

17 Replies

Wait and watch vs immediate treatment for unmutated IgHV and normal FISH

Is there any new evidence emerging to indicate that it’s better to start immediate treatment for unmutated IgHV and normal FISH even if it’s CLL stage 0?? I...

Is there any new evidence emerging to indicate that it’s better to start immedia...

nuji

•3 years ago

14 Replies

Just started Acalabritunib....

Hello, everyone, My husband just started on Acalabrutinib and has been having sore joints and serious headaches. What can you tell me from your experience...

Hello, everyone, My husband just started on Acalabrutinib and has been having s...

hsouter

•3 years ago

12 Replies

Help! Newly diagnosed CLL

Came down with a UTI (unknown for me), blood in the urine, third course of antibiotics. Did FBC and scored 74% lymphocytes (and other WBC anomalies. Long...

Came down with a UTI (unknown for me), blood in the urine, third course of antib...

Petroc

•3 years ago

33 Replies

Weight gain on Venetoclax

Has anybody noticed weight gain whilst on a Venetoclax, I lost 10.5 stone some years ago and had managed to maintain a healthy weight but since taking...

Has anybody noticed weight gain whilst on a Venetoclax, I lost 10.5 stone some ...

2gizzy

•3 years ago

9 Replies

IVIG treatment

I just had my first of 6 IVIG treatments due to low immunity. The treatment went well but about 24 hours later I got a raging headache, leg cramps and aching...

I just had my first of 6 IVIG treatments due to low immunity. The treatment went...

Rivergoddess

•3 years ago

5 Replies

BTK inhibitors for the treatment of CLL - the current state of play of 'brutinibs'

In just a short time, in many places, BTK inhibitors (BTKi) have largely replaced chemoimmunotherapy (CIT) for treatment naive CLL patients, while also playing...

In just a short time, in many places, BTK inhibitors (BTKi) have largely replace...

CLLerinOz

Administrator•3 years ago

37 Replies

Lymphoid Gene Panel Report Question

Hello, I asked my haematologist to send away to Peter Mac to see what my mutational status was? I present as SLL at the moment. I received some information...

Hello, I asked my haematologist to send away to Peter Mac to see what my mutati...

Waves01

•3 years ago

1 Reply

Any Covid survivors with CLL?

Any Covid survivors with CLL? Would love to hear from you. Thanks!

Surfcraze

•3 years ago

16 Replies

Travel Insurance for CLL'ers UK

Apologies for raising this topic as I know it has been covered before. If anyone can refer me to the relevant discussion / advice that would be much...

Apologies for raising this topic as I know it has been covered before. If anyone...

FairweatherSailor

•3 years ago

13 Replies

CLL, blocked infected tear ducts, and DCR

I’m stage A CLL, on watch and wait, and recently had two abscesses weeks apart, on my right tear duct sac, which required IV antibiotics in hospital (ducts...

I’m stage A CLL, on watch and wait, and recently had two abscesses weeks apart, ...

Lesleyriverside

•3 years ago

10 Replies

Flow cytometry of a healthy person?

CLL typically expresses CD19+, CD20+, CD23+, CD5+ and CD10- in a flow cytometry test: http://www.ericll.org/wp-content/uploads/2017/12/Flow-cytometric.pdf How...

CLL typically expresses CD19+, CD20+, CD23+, CD5+ and CD10- in a flow cytometry ...

mantana

•3 years ago

1 Reply

Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?

Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!

Hi guys! My husband was looking around for information and he found about this, ...

krikri1989ho

•3 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2021

Is a short 2 day trip away, unsafe for us?

Did I get that right???

Freedom day could come at a high price for the clinically vulnerable by Sean O'Neil CLL Patient and UK Times Newspaper Chief Reporter

STELLAR Trial in the UK for Richter's

How good has been anyone’s experience of cll team at the Leeds St James hospital in the UK?

ALERT!!! SCAM Email requesting you apply for a COVID Digital Passport is being received by members

Ibrutinib

Acalabrutinib headaches - on and off all day?

Ibrutinib or Acalabrutinib

Time to start treat?

Call the interpreter !

Has anyone heard of the Dr SEBI diet ?

Best face masks

Working, CLL and Covid

Wait and watch vs immediate treatment for unmutated IgHV and normal FISH

Just started Acalabritunib....

Help! Newly diagnosed CLL

Weight gain on Venetoclax

IVIG treatment

BTK inhibitors for the treatment of CLL - the current state of play of 'brutinibs'

Lymphoid Gene Panel Report Question

Any Covid survivors with CLL?

Travel Insurance for CLL'ers UK

CLL, blocked infected tear ducts, and DCR

Flow cytometry of a healthy person?

Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive