Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for September 2018

Status update 17 months post-FCR

I've seen a few posts recently from folks starting or considering starting FCR. I wanted to give you some thoughts re: my experience in hopes they might help...

I've seen a few posts recently from folks starting or considering starting FCR. ...

cwturley

•6 years ago

13 Replies

The CLL Tribune

We just posted the 3rd quarter edition of the CLL Tribune (https://cllsociety.org/quarter-3-2018-volume-4-issue-3/) full of articles on MRD negativity,...

We just posted the 3rd quarter edition of the CLL Tribune (https://cllsociety.or...

bkoffman

CLL CURE Hero•6 years ago

3 Replies

TP53/Ibruvica/herpes

I’m on ibruvica since dec 2017 and i’ve a TP53 mutation... a lot of infeccions almost every month and right now a cronic herpes ... Anyone? Horrible ...

I’m on ibruvica since dec 2017 and i’ve a TP53 mutation... a lot of infeccions a...

Deta1961

•6 years ago

6 Replies

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CCL blood work

If you were diagnosed with CLL in June of 2015 with 40 x 1000 WBC. Your platelets at 154 x 100, then drop to a low of point of 98x100. Why after ten months...

If you were diagnosed with CLL in June of 2015 with 40 x 1000 WBC. Your platelet...

blairzy

•6 years ago

8 Replies

Method of testing

I am curious how samples are collected to see if you are notch1 or complex karyotype. Do they need bone marrow or is blood good enough? Are these typically...

I am curious how samples are collected to see if you are notch1 or complex karyo...

DriedSeaweed

•6 years ago

5 Replies

Lymphocytosis? (Symptomatic)?

What does lymphocytosis (symptomatic) really mean I'm having a hard time clearly understanding this when I look it up here are my test results this has been a...

What does lymphocytosis (symptomatic) really mean I'm having a hard time clearl...

Sassykitten93

•6 years ago

13 Replies

Single tablet Imbruvica

My pharmacy says they have a new single tablet 420 mg Imbruvica that they wanted to send out for my monthly shipment. I declined and asked for the usual 3...

My pharmacy says they have a new single tablet 420 mg Imbruvica that they wanted...

W00dfin

•6 years ago

23 Replies

Neutropenia on Venetoclax

Neutropenia on Venetoclax. How long does it last and what r treatment options

ontheblock

•6 years ago

11 Replies

Malar Festoon Bags

Malar Festoon Bags treatment any options?

Hidden

•6 years ago

2 Replies

Can a SLL patient become CLL?

Was wondering if an SLL can turn into CLL? would that mean it’s invasive? My WBC have always been within the normal range except when I did that FCR treatment...

Was wondering if an SLL can turn into CLL? would that mean it’s invasive? My WBC...

Lola69

•6 years ago

5 Replies

Successful start of second arm of Acalabrutinib, Obinutuzumqb, Venetoclax Trial

One month on Acalabrutinib knocked my nodes down to less than half and my WBC from 82,000 to 62,000. Started the Obinutuzumqb arm yesterday with the 1/10th...

One month on Acalabrutinib knocked my nodes down to less than half and my WBC fr...

Lily_Pad_Master

•6 years ago

29 Replies

Watch the Replays of Last Week's CLL Town Meeting

This past Saturday featured terrific discussions with CLL experts, younger -up-and coming clinicians who give us all help for continued progress in CLL and...

This past Saturday featured terrific discussions with CLL experts, younger -up-a...

tclementi

•6 years ago

2 Replies

Is a Lymphnode Biopsy needed to diagnose CLL when WBC and ALC are ok? Is Needle Biopsy good enough? Can it be checked in the blood first?

Hello, I am just curious. When I was first diagnosed the Hematologist ordered a surgeon to cut out Nodes from my Neck to have them biopsied. The surgeon...

Hello, I am just curious. When I was first diagnosed the Hematologist ordere...

Hoffy

•6 years ago

21 Replies

New to the CLL site

I am new to the site...have posted a couple of things this week but didn't introduce myself. I have been on this CLL journey since the age of 37 (diagnosed in...

I am new to the site...have posted a couple of things this week but didn't intro...

Lisa-1959

•6 years ago

18 Replies

What happens to the body if you are MRD negative and keep taking imbruvica?

Hello beautiful people! Was wondering what happens to our body if we take imbruvica and we are MRD negative? I unfortunately live in a province where MRD...

Hello beautiful people! Was wondering what happens to our body if we take imbruv...

Lola69

•6 years ago

13 Replies

MUST READ for those on Ibrutinib/Imbruvica - concerning advice in pilot study on lower dosing - incl. danger of starting with a lower dose

I'm repeating in full, this very important advice posted by Dr Rick Furman in the CLL/SLL Groups.io forum, due to the risk of incorrect interpretation from a...

I'm repeating in full, this very important advice posted by Dr Rick Furman in th...

AussieNeil

Administrator•6 years ago

28 Replies

I start Ibrutinib n Venetoclax on the Flair Trial tomorrow... after over two years w&w ... will I lose my hair ??

Hair Loss

Hidden

•6 years ago

9 Replies

Blood test results

Newly diagnosed with CLL. What should I be looking for in my blood test results. Thanks

Newly diagnosed with CLL. What should I be looking for in my blood test results....

Clllady

•6 years ago

13 Replies

Live Ask the Expert Session today

At the top of the hour at 8 pm UK time, 3pm Eastern, noon Pacific, I'll host a live Ask the Expert CLL session with expert DR. Jeff Sharman. You can still...

At the top of the hour at 8 pm UK time, 3pm Eastern, noon Pacific, I'll host a l...

andrewschorr

•6 years ago

3 Replies

Newbie with CLL Diagnosis trying to get answers

Hi Folks, I am new to this board since I was diagnosed just this month with CLL. I've always been very healthy and fitness oriented, and am only 53 years old...

Hi Folks, I am new to this board since I was diagnosed just this month with CLL....

Ladynred00

•6 years ago

9 Replies

Change my HU name

I want to change my posting name to something less identifiable. Could you give me guidance on how to do that. Thanks!

I want to change my posting name to something less identifiable. Could you give ...

cbardill

•6 years ago

1 Reply

Good news

I went to see my cardiologist yesterday and was told all my heart tests were good...no heart problems....I was very worried the imbruvica had caused some...

I went to see my cardiologist yesterday and was told all my heart tests were goo...

tlcladygiraffe

•6 years ago

1 Reply

IMBRUVICA TREATMENT

I'm interested in any feedback or input regarding imbruvica. It's been suggested by my oncologist hematologist . Thank you everyone.

I'm interested in any feedback or input regarding imbruvica. It's been suggested...

ozarkharper

•6 years ago

8 Replies

Antibiotic resistance - some recent news

Wonder why some bacterial infections remain stubbornly persistent through repeated antibiotic treatments? "One strategy pathogenic bacteria use to avoid...

Wonder why some bacterial infections remain stubbornly persistent through repeat...

AussieNeil

Administrator•6 years ago

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Increasing member awareness of anonymity and privacy

Have you seen a prompt warning you that you may have included a phone number or email address when you go to submit your post/reply? This change is one of...

Have you seen a prompt warning you that you may have included a phone number or ...

AussieNeil

Administrator•6 years ago

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Husband is having brittle nail issues with Ibrutinib? How have others dealt with this?

My husband has always had great nails, but has been on Ibrutinib for 6 months, and his fingernails and toenails are breaking....any treatments out there that...

My husband has always had great nails, but has been on Ibrutinib for 6 months, a...

kathymac52

•6 years ago

8 Replies

Survey reveals patient perceptions of ITP

Presented at the 23rd Congress of the European Hematology Association (EHA), "a new survey has revealed patients’ perceptions of immune thrombocytopenia...

Presented at the 23rd Congress of the European Hematology Association (EHA), "a ...

AussieNeil

Administrator•6 years ago

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CLL Society Patient Support Group October Meetings - Rockland County, Long Island, New York City, Central New Jersey & Philadelphia

The Metro New York, New Jersey & Philadelphia area has a series of Patient Support Group meetings scheduled in October. - Oct 4 - Rockland County NY-...

The Metro New York, New Jersey & Philadelphia area has a series of Patient Suppo...

lankisterguy

Volunteer•6 years ago

Be the first to reply

I only wanted to know

I apologize if someone here felt bad with my replies. Bye!

Worldcup691

•6 years ago

1 Reply

How do you feel while on Imruvica?

I’m on 560 ml and it is working well for me butI feel medicated and my legs are sore. Any other side effects?

I’m on 560 ml and it is working well for me butI feel medicated and my legs are ...

RK69

•6 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2018

Status update 17 months post-FCR

The CLL Tribune

TP53/Ibruvica/herpes

CCL blood work

Method of testing

Lymphocytosis? (Symptomatic)?

Single tablet Imbruvica

Neutropenia on Venetoclax

Malar Festoon Bags

Can a SLL patient become CLL?

Successful start of second arm of Acalabrutinib, Obinutuzumqb, Venetoclax Trial

Watch the Replays of Last Week's CLL Town Meeting

Is a Lymphnode Biopsy needed to diagnose CLL when WBC and ALC are ok? Is Needle Biopsy good enough? Can it be checked in the blood first?

New to the CLL site

What happens to the body if you are MRD negative and keep taking imbruvica?

MUST READ for those on Ibrutinib/Imbruvica - concerning advice in pilot study on lower dosing - incl. danger of starting with a lower dose

I start Ibrutinib n Venetoclax on the Flair Trial tomorrow... after over two years w&w ... will I lose my hair ??

Blood test results

Live Ask the Expert Session today

Newbie with CLL Diagnosis trying to get answers

Change my HU name

Good news

IMBRUVICA TREATMENT

Antibiotic resistance - some recent news

Increasing member awareness of anonymity and privacy

Husband is having brittle nail issues with Ibrutinib? How have others dealt with this?

Survey reveals patient perceptions of ITP

CLL Society Patient Support Group October Meetings - Rockland County, Long Island, New York City, Central New Jersey & Philadelphia

I only wanted to know

How do you feel while on Imruvica?

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