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CLL Support

22,500 members • 38,645 posts

All posts for July 2018

New York City CLL Support Group, sponsored by the CLL Society Sunday, August 12th at 3:00 PM in New York City

Sunday, August 12th at 3:00 PM in New York City - The New York City CLL Support Group, sponsored by the CLL Society will be meeting. More information and...

Sunday, August 12th at 3:00 PM in New York City - The New York City CLL Support ...

lankisterguy

Volunteer•6 years ago

3 Replies

CLL Society Alert 31 July 2018 Interview with Dr. Adrian Wiestner & Upcoming Support Group Meetings

Featured Video---This week we have included a thoughtful interview from ASH 2017 in Atlanta, GA with Dr. Adrian Wiestner from the NIH on not only the...

Featured Video---This week we have included a thoughtful interview from ASH 2017...

lankisterguy

Volunteer•6 years ago

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Results not yet diagnosed

I had my blood test results. It says Persistent lymphocytosis, some smear cells, suspected LPD/CLL, refer haematology. Reactive lymphocytes seen in moderate...

I had my blood test results. It says Persistent lymphocytosis, some smear cells...

HeatherS-UK

•6 years ago

8 Replies

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Venetoclax

I started allupurinol last tuesday and had a terrible reaction, was admitted until Sunday. Started Venetoclax yesterday and knocked me on my butt. Nauseous,...

I started allupurinol last tuesday and had a terrible reaction, was admitted unt...

MartiP2009

•6 years ago

1 Reply

Need help with B12/D3

I am male 67 dx 20months ago stage0 W&W. I had three monthly review yesterday with onco and GP. For past 3 weeks I had been feeling very low energy/ mild...

I am male 67 dx 20months ago stage0 W&W. I had three monthly review yesterday wi...

vinnet

•6 years ago

8 Replies

ONC Live Videos of CLL Expert Doctors on current topics

Expert Reviews Current State of CLL Treatment https://onclive.cmail20.com/t/ViewEmail/j/C130537421068C412540EF23F30FEDED/DF2046A8F4B3A869F039C523302FD418 -...

Expert Reviews Current State of CLL Treatment https://onclive.cmail20.com/t/View...

lankisterguy

Volunteer•6 years ago

2 Replies

My CLL experience

Hi, l have decided to present my very first post to this forum because i think it is time to put something back for all the help and advise i have taken from...

Hi, l have decided to present my very first post to this forum because i think i...

Headers

•6 years ago

29 Replies

questions about mutated / unmutated

Good morning all, was wondering if anyone had a simple explanation about 13q and mutated versus unmutated. I am 13q deleted and mutated. thanks and have a...

Good morning all, was wondering if anyone had a simple explanation about 13q a...

BlueGillfisherman

•6 years ago

16 Replies

Temperature spike

I finished my course of BR last November and have been doing OK up to now. Then last week my temperature went up to 39.5 and i had to go back to hospital for...

I finished my course of BR last November and have been doing OK up to now. Then ...

Clovelly

•6 years ago

4 Replies

Dengue's best early remedies please...

Hi, this is Jerome. My son has just been diagnosed now of Dengue and is confined with a 120 platelet. Do we need to worry much of his situation? He just...

Hi, this is Jerome. My son has just been diagnosed now of Dengue and is confined...

fitandhealthy_1073

•6 years ago

7 Replies

sunbathing

have finished my leukeran + gazyba treatment, doing fine Is there any problem to sunbathe many thanks cg

have finished my leukeran + gazyba treatment, doing fine Is there any problem to...

giuliano

•6 years ago

9 Replies

Needing advice and support

Hello everyone! My husband was diagnosed with CLL in 2006. He has remained pretty healthy up until the last year or so when he started showing more symptoms...

Hello everyone! My husband was diagnosed with CLL in 2006. He has remained prett...

misspitifour

•6 years ago

24 Replies

Blood cancer

Hello.. My 12 year old sister is serviving from high WBC ... How much she have chance to servive... She have 1.5 lac WBC which is dignosed last night..... Plz...

Hello.. My 12 year old sister is serviving from high WBC ... How much she have c...

Azharkhan123

•6 years ago

2 Replies

Cirmtuzumab

Hi, At ASH, I had the chance to interview Dr. Thomas Kipps, an expert on cirmtuzumab that targets ROR1 (Receptor Tyrosine Kinase Like Orphan Receptor 1)....

Hi, At ASH, I had the chance to interview Dr. Thomas Kipps, an expert on cirmtuz...

bkoffman

CLL CURE Hero•6 years ago

7 Replies

Use Mosaic Chromosomal Alterations to ID New Approaches to Preventing CLL?

‘The large size of this data set allowed us to find many interesting patterns in the data. The biggest surprise was that several subclasses of clonal...

‘The large size of this data set allowed us to find many interesting patterns in...

Juliette02

•6 years ago

1 Reply

Sepsis

12th cause of death in Canada....

Fant1924

•6 years ago

7 Replies

High Platelets

My platelet count usually run in the 500 to 750 range. However over the past six months I’ve been running in the 900- Hematologist not really concerned...

My platelet count usually run in the 500 to 750 range. However over the past s...

Leelee22

•6 years ago

4 Replies

Maybe side effect after 2 weeks on Ibrutinib?

So I posted this morning that I just hit two weeks on Ibrutinib with no side effects. Now last night I had a beer I'd never had before and I didn't like it and...

So I posted this morning that I just hit two weeks on Ibrutinib with no side eff...

Patc890USA

•6 years ago

23 Replies

Medical update with no Ibrutinib

Hi all Just an update. As you know I was denied Ibrutinib as I was in remission for 3.8 years and NHS England put a cap at 3 years before relapse. Anyway I've...

Hi all Just an update. As you know I was denied Ibrutinib as I was in remission...

Mick491

•6 years ago

20 Replies

Lymphoma Research Foundation - LRF@lymphoma.org - USA - from Ask the Doctor evening dinner programs to 2.5 day Educational Forums

For our USA members, the CLL Society Alerts & site https://cllsociety.org/upcoming-cll-patient-education-programs/ often include notices of upcoming...

For our USA members, the CLL Society Alerts & site https://cllsociety.org/upco...

lankisterguy

Volunteer•6 years ago

1 Reply

Muscle and joint pain

I need some help! I have been on imbrivica for 8 months. I decided it was time to start running again and I went for a short run 1 1/2 mile. The next day i...

I need some help! I have been on imbrivica for 8 months. I decided it was time...

Jemisavs5

•6 years ago

15 Replies

My mom 78 years old diagnosed with CLL.

Hi my mom is 78 right now and diagnosed with CLL. Hematologist said that she already had 2010 upon checkihg my folder files of her blood test. Doctor prescribe...

Hi my mom is 78 right now and diagnosed with CLL. Hematologist said that she alr...

vilmacheng

•6 years ago

11 Replies

Is the combination of Imbrutinib and Venetoclax still in trial? Do you have to be in a trial to combine the two?

My husband started Imbrutinib just 3 months ago, but there was no discussion about Venetoclax as added in. His numbers are nearing normal and he has had minor...

My husband started Imbrutinib just 3 months ago, but there was no discussion abo...

kathymac52

•6 years ago

40 Replies

Ibrutiniv or.....

Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutated , waiting for results on mutation of gen p53 in about two weeks. WBC are in...

Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutate...

antonb

•6 years ago

16 Replies

Second blood draw

Went for blood test today ,17th day on imbruvica, wbc doubled to 420, platelets up 89 from 66 hemoglobin same at 9.5. Was hoping to turn the corner, maybe next...

Went for blood test today ,17th day on imbruvica, wbc doubled to 420, platelets ...

Blallen

•6 years ago

4 Replies

Went for my check up

I went for my check up last week she said I was doing better but I still wasn’t there but it’s good to know that the meds are helping and I have had two iron...

I went for my check up last week she said I was doing better but I still wasn’t ...

LUCYLU51

•6 years ago

3 Replies

Two years after stopping Ibrutinib muscle pains getting worse

Two years ago I stopped Flair trial of Ibrutinib and Rituximab and have been doing pretty well since then. However in the last few weeks I have developed...

Two years ago I stopped Flair trial of Ibrutinib and Rituximab and have been doi...

romarin

•6 years ago

8 Replies

Medicare information and advice from SHIPs - State Health Insurance Assistance Programs (SHIPs)

Learn about SHIPs You may have heard about SHIPs — State Health Insurance Assistance Programs. SHIPs offer local, personalized counseling and assistance to...

Learn about SHIPs You may have heard about SHIPs — State Health Insurance Assi...

lankisterguy

Volunteer•6 years ago

2 Replies

Heartburn and Feeling of Fullness

I've been reading posts related to an enlarged spleen. I was diagnosed about 2 years ago and I have been told all is fine "wait and watch". When I first went...

I've been reading posts related to an enlarged spleen. I was diagnosed about 2 y...

Laramee

•6 years ago

6 Replies

The Problems with Testimonials

Here is an interesting cross post from Lymphomation@yahoogroups.com updated on lymphomation.org: the problems with testimonials Tue Jul 24, 2018 7:24 am...

Here is an interesting cross post from Lymphomation@yahoogroups.com updated on...

lankisterguy

Volunteer•6 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2018

New York City CLL Support Group, sponsored by the CLL Society Sunday, August 12th at 3:00 PM in New York City

CLL Society Alert 31 July 2018 Interview with Dr. Adrian Wiestner & Upcoming Support Group Meetings

Results not yet diagnosed

Venetoclax

Need help with B12/D3

ONC Live Videos of CLL Expert Doctors on current topics

My CLL experience

questions about mutated / unmutated

Temperature spike

Dengue's best early remedies please...

sunbathing

Needing advice and support

Blood cancer

Cirmtuzumab

Use Mosaic Chromosomal Alterations to ID New Approaches to Preventing CLL?

Sepsis

High Platelets

Maybe side effect after 2 weeks on Ibrutinib?

Medical update with no Ibrutinib

Lymphoma Research Foundation - LRF@lymphoma.org - USA - from Ask the Doctor evening dinner programs to 2.5 day Educational Forums

Muscle and joint pain

My mom 78 years old diagnosed with CLL.

Is the combination of Imbrutinib and Venetoclax still in trial? Do you have to be in a trial to combine the two?

Ibrutiniv or.....

Second blood draw

Went for my check up

Two years after stopping Ibrutinib muscle pains getting worse

Medicare information and advice from SHIPs - State Health Insurance Assistance Programs (SHIPs)

Heartburn and Feeling of Fullness

The Problems with Testimonials

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