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CLL Support

22,532 members • 38,709 posts

All posts for December 2019

Treatment for Richter Syndrome

Hi What treatment are they receiving for Richter syndrome? I have only been given the R-CHOP.

Hi What treatment are they receiving for Richter syndrome? I have only been give...

Priss69

•4 years ago

20 Replies

I am officially off of Ibrutinib

A week ago Monday I took a short ambulance ride as we thought I had entered AFIB or was having an actual heart attack, I had pressure/weight on the chest,...

A week ago Monday I took a short ambulance ride as we thought I had entered AFIB...

KevinCLLITP

•4 years ago

12 Replies

Webinar - Oral Therapies and Adherence in Lymphoma and CLL Jan 23 2020, 2:00-3:00 PM EST

wmay13241

•4 years ago

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Hi everyone, has anyone that's been on Imbruvica experienced severe pain under their nails? The pain like hitting your thumb with a hammer

Imbruvica/Ibrutinib side effects

Nickos66

•4 years ago

5 Replies

CLL constant tiredness

I've been diagnosed with CLL. It's in the early stages and I'm told not to panic about it too much yet . I can feel the symptoms starting to kick in though....

I've been diagnosed with CLL. It's in the early stages and I'm told not to panic...

GD-K

•4 years ago

15 Replies

Travel insurance results

Hi I would like to thank everyone for their tips for travel insurance companies. I eventually got a policy with INSURE WITH who have given me a policy for CLL...

Hi I would like to thank everyone for their tips for travel insurance companies....

Yidarmy69

•4 years ago

19 Replies

Lunch

Well 20 steroids a day is going to make sleep interestingly rare. Very poor day at The Christie today. They can’t locate biopsies from last week & bleed around...

Well 20 steroids a day is going to make sleep interestingly rare. Very poor day ...

Sepsur

•4 years ago

63 Replies

Going to university to study

Hi Everyone. I have a quick query. I retired, this year to do a 4 year undergrad course in geology. A few months ago my GP did a routine blood test and then...

Hi Everyone. I have a quick query. I retired, this year to do a 4 year undergra...

dal58

•4 years ago

26 Replies

High lactic acid Low bicarbonate

Greetings from Adelaide Just wondering if anyone has had this issue and what was done about it. I’m nearly three years on active observation and other bloods...

Greetings from Adelaide Just wondering if anyone has had this issue and what w...

shazzy57

•4 years ago

4 Replies

ASH 2019

Proud to be presenting our abstract 4716 An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL) at...

Proud to be presenting our abstract 4716 An Innovative Telemedicine Platform to ...

bkoffman

CLL CURE Hero•4 years ago

5 Replies

20 years with CLL, just found this group

Hi all, I'm 79 yo with a WBC of around 100, mutated, a few slightly enlarged lymph nodes, lymphocytic colitis, and chronic fatigue. No treatment yet except...

Hi all, I'm 79 yo with a WBC of around 100, mutated, a few slightly enlarged lym...

PerfectPurple

•4 years ago

11 Replies

Dry eyes

Hi,I've been experiencing some blurred vision,finding it difficult to concentrate on my work on nightshift, which involves matching and making ink colours for...

Hi,I've been experiencing some blurred vision,finding it difficult to concentrat...

Nickos66

•4 years ago

4 Replies

40 year old MBL

Anyone diagnosed in early 40's with Mbl ?

Lynn5117

•4 years ago

3 Replies

Atrial flutter and racing heart

Husband has been on Imbruvica less then a year and ended up in the hospital last week with Atrial flutter and racing heart rate. He was taken off the...

Husband has been on Imbruvica less then a year and ended up in the hospital last...

1524

•4 years ago

2 Replies

Ginger ?

I am not familiar with ginger, but may include some ground ginger as spice in my diet. Does ginger affect CLL as medical condition ? Does ginger interfere...

I am not familiar with ginger, but may include some ground ginger as spice in m...

vog292

•4 years ago

35 Replies

Fatigue and imbruvica

I've been on imbruvica for about the last three and a half years. My counts are steady. For example, WBC was 11.1, RBC 3.65, HGB 12.5, platelets 62, and my...

I've been on imbruvica for about the last three and a half years. My counts are ...

Jamstev71

•4 years ago

9 Replies

ASH 2019: U-MRD by subgroup (ibrutinib+venetoclax) CAPTIVATE trial

This is how we achieve personalized, precision medicine. 73% of patients achieved U-MRD4 in BM after 12 cycles of ibrutinib + venetoclax. This is shown as...

This is how we achieve personalized, precision medicine. 73% of patients achiev...

avzuclav

•4 years ago

25 Replies

Richter’s treatment started

Yesterday I began my Richter’s treatment journey: Nivolumab (Opdivo) infusion at Moffitt twice a month for two months with daily 420mg Ibrutinib. The infusion...

Yesterday I began my Richter’s treatment journey: Nivolumab (Opdivo) infusion at...

SarasotaPaul

•4 years ago

11 Replies

ASH 2019: U-MRD kinetics in the CLL14 trial (V+O vs Chl+O)

In this trial, treatments were given for 12 months. Note the decreasing slope of the MRD levels until Cycle 12 (end of treatment), then the positive slope of...

In this trial, treatments were given for 12 months. Note the decreasing slope ...

avzuclav

•4 years ago

9 Replies

YABTKi or Yet Another BTK inhibitor - the A to Z list of Bruton's Tyrosine Kinase Inhibitors for CLL following Ibrutinib's success

I'll admit that YABTKi is not a recognised CLL related acronym, (acronym lists are here...

I'll admit that YABTKi is not a recognised CLL related acronym, (acronym lists a...

AussieNeil

Administrator•4 years ago

70 Replies

Insurance trouble with Imbruvica

I have Waldenstroms and have been on Imbruvica (420mg per day) so thats 90 capsules per month for 1 year and it is working great for me. I have a cadillac...

I have Waldenstroms and have been on Imbruvica (420mg per day) so thats 90 capsu...

Retiredman

•4 years ago

5 Replies

CLL Society Support Group Meetings USA Coming Up!

CLL Society Support Group Meetings Coming Up!...

lankisterguy

Volunteer•4 years ago

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Ketones for CLL?

Ketones for CLL? Hi everybody I have a question hopefully you can help me here, as many of us mention before, we all look for answers or solutions in different...

Ketones for CLL? Hi everybody I have a question hopefully you can help me here, ...

C3PO1

•4 years ago

9 Replies

Why are doctors so afraid of Ricther?

Since I was diagnosed with Ricther's Syndrome, even of the more than eight doctors I visited, none used the word Ricther. All were really negative when it came...

Since I was diagnosed with Ricther's Syndrome, even of the more than eight docto...

Priss69

•4 years ago

34 Replies

Test Before Treat

Test Before Treat™ Although this comes from the USA, the logic and reasoning can apply to any international patient and medical professionals....

Test Before Treat™ Although this comes from the USA, the logic and reasoning c...

lankisterguy

Volunteer•4 years ago

17 Replies

NCCN Guidelines for Treatment-Naive CLL 2020

This appears to be a slide presented today from Dr. Furman. source: https://twitter.com/cvdelucaPVI/status/1202936508308762625 full presentation slides are...

This appears to be a slide presented today from Dr. Furman. source: https://twi...

avzuclav

•4 years ago

1 Reply

Lymph nodes after 6 rounds of FCR

Hi, My friend completed 6 rounds of FCR last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased...

Hi, My friend completed 6 rounds of FCR last month. Still i can see small small ...

pbaddi

•4 years ago

5 Replies

venclexta and Imbruvica both owned by same company

Just for thought- i copied a paragraph from an article i read The study was supported by AbbVie, the manufacturer of venetoclax. AbbVie also owns...

Just for thought- i copied a paragraph from an article i read The study was sup...

Hidden

•4 years ago

7 Replies

START OF IBRUTINIB WITH CLL

HI ALL, Thank you for all informative readings. Today is my second day of taking IBRUTINIB 420 mg. So far so good, no Side Effects. How early could someone...

HI ALL, Thank you for all informative readings. Today is my second day of taking...

Traudel

•4 years ago

17 Replies

SKIP VENETOCLAX, GO TO ACALABRUTINIB

My CLL specialist said when I need treatment again (had to quit Ibrutinib after 3 years due to afib), he would probably start me on Acalabrutinib. My...

My CLL specialist said when I need treatment again (had to quit Ibrutinib after ...

cll2013

•4 years ago

24 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2019

Treatment for Richter Syndrome

I am officially off of Ibrutinib

Webinar - Oral Therapies and Adherence in Lymphoma and CLL Jan 23 2020, 2:00-3:00 PM EST

Hi everyone, has anyone that's been on Imbruvica experienced severe pain under their nails? The pain like hitting your thumb with a hammer

CLL constant tiredness

Travel insurance results

Lunch

Going to university to study

High lactic acid Low bicarbonate

ASH 2019

20 years with CLL, just found this group

Dry eyes

40 year old MBL

Atrial flutter and racing heart

Ginger ?

Fatigue and imbruvica

ASH 2019: U-MRD by subgroup (ibrutinib+venetoclax) CAPTIVATE trial

Richter’s treatment started

ASH 2019: U-MRD kinetics in the CLL14 trial (V+O vs Chl+O)

YABTKi or Yet Another BTK inhibitor - the A to Z list of Bruton's Tyrosine Kinase Inhibitors for CLL following Ibrutinib's success

Insurance trouble with Imbruvica

CLL Society Support Group Meetings USA Coming Up!

Ketones for CLL?

Why are doctors so afraid of Ricther?

Test Before Treat

NCCN Guidelines for Treatment-Naive CLL 2020

Lymph nodes after 6 rounds of FCR

venclexta and Imbruvica both owned by same company

START OF IBRUTINIB WITH CLL

SKIP VENETOCLAX, GO TO ACALABRUTINIB

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