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CLL Support

22,521 members • 38,683 posts

All posts for August 2019

Ibrutinib and Rituximab (IR) is Superior to Chemo-immunotherapy (CIT) in CLL” Big News, or is it really, and did they get it right?

Many patients are being offered IR and that's a good thing, but wouldn't Ibrutinib alone be a better choice for nearly everyone. For the whole story, please...

Many patients are being offered IR and that's a good thing, but wouldn't Ibrutin...

bkoffman

CLL CURE Hero•5 years ago

8 Replies

Bladder infection

I have had a bladder infection for a couple of months. I went to a urologist. The bacteria came back as streptococcus and staph. Still haven’t got ridden of...

I have had a bladder infection for a couple of months. I went to a urologist. Th...

Txsgrl

•5 years ago

7 Replies

Retirement??????????

I'm not sure how to ask this question. I am two years into diagnosis of CLL. On W and W with blood counts remaining stable. My only "issue" is fatigue which...

I'm not sure how to ask this question. I am two years into diagnosis of CLL. O...

claretsauce

•5 years ago

46 Replies

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New research study reported in NEJM: Ibrutinib–Rituximab or Chemoimmunotherapy for Chronic Lymphocytic Leukemia

Found this to be a good news article. I know some will say study was funded heavily by drug companies, but so what....I base my opinion on the integrity of the...

Found this to be a good news article. I know some will say study was funded heav...

jdolinger

•5 years ago

6 Replies

Reaching Out for Help For My 93 year old Mom; thanks

My mom is 93 years old, and was diagnosed with CLL 2 years ago. She is a saint, although I am sure that most children will say that about their moms. I would...

My mom is 93 years old, and was diagnosed with CLL 2 years ago. She is a saint,...

BaseballGardener

•5 years ago

29 Replies

Start IMBRUVICA or not

I’m 69 yr old male with 82,000 wbc. The remaining blood tests fall in the normal range. I do not have any symptoms, but I’ve been diagnosed having CLL. I’ve...

I’m 69 yr old male with 82,000 wbc. The remaining blood tests fall in the normal...

Turbinator

•5 years ago

15 Replies

Cll

What happens if you forget for one day to take your Imbruvica. For cll

anniefrankie8679

•5 years ago

9 Replies

Can’t handle the heat like I could last year

I get hot very easily, I can’t handle the heat at all. Is this related to my CLL?

I get hot very easily, I can’t handle the heat at all. Is this related to my CLL...

Gvines

•5 years ago

17 Replies

Platlet count of 132 should I worry

just had blood work and my platlet count is 132 - 4 months ago 136 should i worry

just had blood work and my platlet count is 132 - 4 months ago 136 should i worr...

flagirl19

•5 years ago

8 Replies

Relapsed after 40 months in remission

Several days ago a CT/PET detected lymphoma progression wife (72) who was in remission since her CAR-T infusion in March 2016. Monday she will get a lymph node...

Several days ago a CT/PET detected lymphoma progression wife (72) who was in rem...

wmay13241

•5 years ago

16 Replies

Tom Henry is our CLL pharmacist expert who wrote this perspective on biosimilars...

bkoffman

CLL CURE Hero•5 years ago

7 Replies

The Long Island CLL Society Patient/Caregiver Support Group August 8th Meeting

Just wanted to invite all who might be in the Long Island, NY area to the monthly meeting of the Long Island CLL Society Patient/Caregiver Support Group...

Just wanted to invite all who might be in the Long Island, NY area to the monthl...

SusanBo

•5 years ago

1 Reply

Rosa on Imbruvica

I am starting my 8th week on Imbruvica and am starting to feel lots of aches in the bones, mostly my fingers and thumb, now right at my rib cage. Anyone feel...

I am starting my 8th week on Imbruvica and am starting to feel lots of aches in ...

oso7672

•5 years ago

7 Replies

MRD

When I finished FCR in 4/2014 my blood showed MRD negative. Since than it showed starting 2/2015 CLL of 0,1 - 0,5% in 10/2017. next in 2018 UMRD as they told...

When I finished FCR in 4/2014 my blood showed MRD negative. Since than it showed...

seoul

•5 years ago

1 Reply

CAR-T

Hi, CAR-T therapy just keeps getting better in CLL. Please take a look at my interview with Dr. Siddiqi from ASH 2018:...

Hi, CAR-T therapy just keeps getting better in CLL. Please take a look at my int...

bkoffman

CLL CURE Hero•5 years ago

7 Replies

What is herd immunity? Why is it so important to us with CLL and how many people need to be vaccinated to protect a community?

The term herd immunity comes from the observation of how a herd of buffalo forms a circle, with the strong on the outside protecting the weaker and more...

The term herd immunity comes from the observation of how a herd of buffalo forms...

AussieNeil

Administrator•5 years ago

16 Replies

Update on possible radiation on early SLL, and uh, yay for lymphoma?

Hi CLLers, happy August 2019. I wrote a couple months back to ask about people's experience with radiation for SLL. I had detectable SLL in one node only,...

Hi CLLers, happy August 2019. I wrote a couple months back to ask about people's...

mariemascio

•5 years ago

4 Replies

Venetoclax & keeping hydrated

Hi fellow members, How many of you feel like you get/are dehydrated while on venetoclax? Meaning you just can't drink enough. I am aware that part of the...

Hi fellow members, How many of you feel like you get/are dehydrated while on ven...

Eliotf

•5 years ago

12 Replies

Prednisone was My First Medication. I started on 60 mg.

In November, 3017, I was diagnosed with CLL. Prednisone was my first daily medication for over one year. I started on 60 mg daily and beginning with the 2nd...

In November, 3017, I was diagnosed with CLL. Prednisone was my first daily medic...

Hidden

•5 years ago

1 Reply

CLL with with WBC over 100,000

This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have...

This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cl...

Saber21

•5 years ago

16 Replies

Knee pain during the night and getting up in the mornings

Hi all, does anyone else have knee pain especially getting up in the morning? It goes eventually but creeps in again at bedtime. On WandW and have started...

Hi all, does anyone else have knee pain especially getting up in the morning? I...

Roseneath69

•5 years ago

33 Replies

NEW CONSULTANT

My husband had his appointment with his new consultant on Friday and is still in remission, but felt he should see an Immunologist as he had a number of...

My husband had his appointment with his new consultant on Friday and is still in...

very

•5 years ago

16 Replies

MRD on 200 mg venetoclax (venclexta)

I asked before whether anyone was on 200 mg of venetoclax, and a number of people said yes (due to side effects). I am now wondering whether anyone on 200 mg...

I asked before whether anyone was on 200 mg of venetoclax, and a number of peopl...

profrich

•5 years ago

4 Replies

Cord blood for leukemia/ lymphoma?

Not sure yet what my b lymphoma diagnosis is. But a timely question has arisen in my family. Both of my daughters are pregnant and due late November. One asked...

Not sure yet what my b lymphoma diagnosis is. But a timely question has arisen i...

Sunfishjoy

•5 years ago

2 Replies

Iron Man Bolton update ....finally!

Well, the boy did it!!! Iron Man Bolton completed and CLLSA have some great funds coming their way ....all for us to benefit from!!!! It was a tough old day;...

Well, the boy did it!!! Iron Man Bolton completed and CLLSA have some great fun...

Bethan49

•5 years ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2019

Ibrutinib and Rituximab (IR) is Superior to Chemo-immunotherapy (CIT) in CLL” Big News, or is it really, and did they get it right?

Bladder infection

Retirement??????????

New research study reported in NEJM: Ibrutinib–Rituximab or Chemoimmunotherapy for Chronic Lymphocytic Leukemia

Reaching Out for Help For My 93 year old Mom; thanks

Start IMBRUVICA or not

Cll

Can’t handle the heat like I could last year

Platlet count of 132 should I worry

Relapsed after 40 months in remission

Biosimilars

The Long Island CLL Society Patient/Caregiver Support Group August 8th Meeting

Rosa on Imbruvica

MRD

CAR-T

What is herd immunity? Why is it so important to us with CLL and how many people need to be vaccinated to protect a community?

Update on possible radiation on early SLL, and uh, yay for lymphoma?

Venetoclax & keeping hydrated

Prednisone was My First Medication. I started on 60 mg.

CLL with with WBC over 100,000

Knee pain during the night and getting up in the mornings

NEW CONSULTANT

MRD on 200 mg venetoclax (venclexta)

Cord blood for leukemia/ lymphoma?

Iron Man Bolton update ....finally!

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