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CLL Support

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All posts for June 2020

How to decipher a letter from the haematologist?

How to decipher a letter from the haematologist? I have had a series of recent blood tests and was unable to speak to the haematologist due to Covid. I have...

How to decipher a letter from the haematologist? I have had a series of recent b...

dirtbiker

•4 years ago

13 Replies

Imbruvica and hair loss

I’ve been taking Imbruvica for 5 months and at 4 months started losing my hair. At this point I’ve lost more than 60% and need to buy a wig. Does anyone know...

I’ve been taking Imbruvica for 5 months and at 4 months started losing my hair. ...

dancingqueenaa

•4 years ago

12 Replies

Treatment starting uncertainty

I’ve been told for a few months I’ll need treatment soon due to a ‘massive’ spleen. With Covid under control for now it’s looking likely that the go ahead for...

I’ve been told for a few months I’ll need treatment soon due to a ‘massive’ sple...

HarryMet

•4 years ago

15 Replies

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Axi-Cel (anti-CD19 CAR T-cell therapy FMC63-28Z) Induces Durable Remissions in Relapsed CLL, B-Cell Lymphoma

Patients with relapsed chronic lymphocytic leukemia (CLL) and B-cell lymphoma who received the anti-CD19 CAR T-cell therapy FMC63-28Z, which was later...

Patients with relapsed chronic lymphocytic leukemia (CLL) and B-cell lymphoma wh...

AussieNeil

Founder Admin•4 years ago

5 Replies

I was Diagnosed one month ago and have started having terrible night sweats.

I wake in the night with wet hair and wet upper body. NIghtgown is wet, and my sheets are damp. This is happening every night. I would love to hear what...

I wake in the night with wet hair and wet upper body. NIghtgown is wet, and my s...

gustave

•4 years ago

13 Replies

Enquiry

My dad is a cll patient which was detected in dec last yr.He is now on ibrutinib tablet 1 everyday .His readings of WBC has come dwn from 500000 to 30000.But...

My dad is a cll patient which was detected in dec last yr.He is now on ibrutinib...

sweetromeet

•4 years ago

5 Replies

SHIELDING 2

Went out for a drive and a walk this morning, It was very good and felt liberating. Traffic was very light and although it was cold we managed to get out for a...

Went out for a drive and a walk this morning, It was very good and felt liberati...

Hidden

•4 years ago

8 Replies

Question - please,and thanks to all for your support this week! Is BMB always necessary before starting treatment?

Good news all, husband back in hands of prior oncologist at Baptist. Treating the AIHA with blood transfusions and Rituximab. Discussed if need to treatment...

Good news all, husband back in hands of prior oncologist at Baptist. Treating th...

Palmetto

•4 years ago

11 Replies

Very nervous high wbc

Just went in for a random blood test 34 m and my wbc came back 230 I’m very nervous could it be anything besides cancer that makes it this high

Just went in for a random blood test 34 m and my wbc came back 230 I’m very nerv...

Parknolia1

•4 years ago

4 Replies

Richter's transformation???

CoCoLuna11

•4 years ago

31 Replies

UK webinar - CLL treatment a changing landscape

Posted on behalf of HAIRBEAR_UK When: Jun 29, 2020 11:00 AM London We invite you to Join us for an upcoming webinar on chronic lymphocytic leukaemia (CLL)...

Posted on behalf of HAIRBEAR_UK When: Jun 29, 2020 11:00 AM London We invite yo...

Jm954

Administrator•4 years ago

11 Replies

Virtual European Haematology Association

This link will take you to the e-posters and e-abstracts for this year's virtual EHA......

This link will take you to the e-posters and e-abstracts for this year's virtual...

Jm954

Administrator•4 years ago

1 Reply

LIVING WITH CLL: A QUANTITATIVE CROSS-SECTIONAL STUDY OF ITALIAN PATIENTS' EXPERIENCES

A virtual EHA e-poster. There is a discernible, often ignored or under-evaluated care management gap in CLL care, where the estimated improved clinical outcome...

A virtual EHA e-poster. There is a discernible, often ignored or under-evaluated...

Jm954

Administrator•4 years ago

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ASCEND: Acalabrutinib Versus Idelalisib Plus Rituximab or Bendamustine Plus Rituximab in R/R CLL

Take home message is that Acalabrutinib significantly improved PFS and that Idelalisib Plus Rituximab treatment was associated with a high level of serious...

Take home message is that Acalabrutinib significantly improved PFS and that Idel...

Jm954

Administrator•4 years ago

4 Replies

Venetoclax and Rituximab to achieve MRD?

My brother is on venetoclax monotherapy and he is found to start 6 cicles of Rituximab also. He is on the 400 mg dose of venetoclax now and his blood works are...

My brother is on venetoclax monotherapy and he is found to start 6 cicles of Rit...

Cgr2018

•4 years ago

2 Replies

Go off imbruvica

Hello! My brother it’s now on 400 mg of venetoclax, for 2 weeks. All the nodes dessapeared and the blood levels are good. Because he relapsed on imbruvica, at...

Hello! My brother it’s now on 400 mg of venetoclax, for 2 weeks. All the nodes ...

Cgr2018

•4 years ago

7 Replies

How to find my saved posts?

Belkin123

•4 years ago

2 Replies

How to leave (unfollow) a HealthUnlocked community

While the process for joining (following) a HealthUnlocked community when you sign up is fairly obvious, it is easy to subsequently join other communities, yet...

While the process for joining (following) a HealthUnlocked community when you si...

AussieNeil

Founder Admin•4 years ago

1 Reply

SHIELDING

As someone with CLL who is shielding can I now go out for a drive, provided I don't get out of my car and I keep the journey local.

As someone with CLL who is shielding can I now go out for a drive, provided I do...

Hidden

•4 years ago

44 Replies

Does anyone have CLL and MCL?

Does anyone have CLL and MCL? If so, what types of treatment options are there? I was first diagnosed with CLL than 7 years later I was diagnosed with MCL....

Does anyone have CLL and MCL? If so, what types of treatment options are there?...

Conehead

•4 years ago

4 Replies

Shielding updates and Q&A, webinars for each UK country are now opening for registration

Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different...

Good morning friends With imminent announcements of changes to shielding guidanc...

HAIRBEAR_UK

Founder Admin•4 years ago

7 Replies

CLL Society COVID-19 Virtual Community Meeting: Managing Re-Entry this Thursday at 11 AM in California

Hi This Thursday is our COVID-19 Virtual Community Meeting: Managing Re-Entry. Join our CLL experts Dr. Mazyar Shadman, and Dr. Deborah Stephens, Infectious...

Hi This Thursday is our COVID-19 Virtual Community Meeting: Managing Re-Entry. J...

bkoffman

CLL CURE Hero•4 years ago

2 Replies

New to Chronic leukemia

Hi all. I'm new to all this and hoping to connect with ppl that understand what I'm going thru. I lost my right leg to bone lesion, failed bone transplants and...

Hi all. I'm new to all this and hoping to connect with ppl that understand what ...

Wowo23

•4 years ago

1 Reply

Shielding finishes end of July - UK

Just read in UK online newspaper. Letters to go out next week. Shielding and associated support finishes at the end of July with only priority online...

Just read in UK online newspaper. Letters to go out next week. Shielding and as...

devonrr

•4 years ago

42 Replies

Diagnosed with CLL 2014, chemotherapy 2017 Oncologist prescribes chemo pills, 5 days per month,3 times daily INDEFINITELY. Any Alternatives?

I'm new here and live in Ecuador, I desire to go in remission but limited resources here. Need to know what else I can do?

I'm new here and live in Ecuador, I desire to go in remission but limited resour...

LaurenSheryl

•4 years ago

5 Replies

Advice help

Hi All, I’m a little worried as I have just had a blood test result and the GP told me it was 9.5. Last year July it was 8.5 - I don’t know what these numbers...

Hi All, I’m a little worried as I have just had a blood test result and the GP t...

Pav545

•4 years ago

10 Replies

Shielding update

Unfortunately, the shielding community received no further information yesterday. One can handle ones condition but the lack of reliable information is the...

Unfortunately, the shielding community received no further information yesterday...

Eddie111

•4 years ago

4 Replies

Ibrutinib and gum bleeding

Hi everyone, is it necessary to tell my dentist that I am CLL patient as I have appointment next week for checkup

Hi everyone, is it necessary to tell my dentist that I am CLL patient as I have ...

ANA4

•4 years ago

16 Replies

Low pulse rate and CLL

Have noticed for a while now that if/when I get up during the night, I can feel my heart beating. We do check our blood pressure with a home testing machine....

Have noticed for a while now that if/when I get up during the night, I can feel ...

kitchengardener2

•4 years ago

5 Replies

Shingles and cll

I have been on ibrutinib since aug 2019 and now that things have opened up a bit my sister was going to come for a visit. Only problem is she now has shingles....

I have been on ibrutinib since aug 2019 and now that things have opened up a bit...

Imbub

•4 years ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2020

How to decipher a letter from the haematologist?

Imbruvica and hair loss

Treatment starting uncertainty

Axi-Cel (anti-CD19 CAR T-cell therapy FMC63-28Z) Induces Durable Remissions in Relapsed CLL, B-Cell Lymphoma

I was Diagnosed one month ago and have started having terrible night sweats.

Enquiry

SHIELDING 2

Question - please,and thanks to all for your support this week! Is BMB always necessary before starting treatment?

Very nervous high wbc

Richter's transformation???

UK webinar - CLL treatment a changing landscape

Virtual European Haematology Association

LIVING WITH CLL: A QUANTITATIVE CROSS-SECTIONAL STUDY OF ITALIAN PATIENTS' EXPERIENCES

ASCEND: Acalabrutinib Versus Idelalisib Plus Rituximab or Bendamustine Plus Rituximab in R/R CLL

Venetoclax and Rituximab to achieve MRD?

Go off imbruvica

How to find my saved posts?

How to leave (unfollow) a HealthUnlocked community

SHIELDING

Does anyone have CLL and MCL?

Shielding updates and Q&A, webinars for each UK country are now opening for registration

CLL Society COVID-19 Virtual Community Meeting: Managing Re-Entry this Thursday at 11 AM in California

New to Chronic leukemia

Shielding finishes end of July - UK

Diagnosed with CLL 2014, chemotherapy 2017 Oncologist prescribes chemo pills, 5 days per month,3 times daily INDEFINITELY. Any Alternatives?

Advice help

Shielding update

Ibrutinib and gum bleeding

Low pulse rate and CLL

Shingles and cll

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