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CLL Support

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All posts for December 2019

Is creatine a bad idea?

Hi is it dodgy if I take creatine? I'm early stage one CLL. I've gone on a vegan low-carb diet and my numbers go down each month with it but I've lost some...

Hi is it dodgy if I take creatine? I'm early stage one CLL. I've gone on a vegan...

Research123

•4 years ago

5 Replies

Reporting from ASCO 2019 (yes ASCO, not ASH)

Hi, With ASH looming, it’s about time I finish up my reporting from ASCO 2019, the other huge American cancer meeting, that is traditionally more focused on...

Hi, With ASH looming, it’s about time I finish up my reporting from ASCO 2019, t...

bkoffman

CLL CURE Hero•4 years ago

6 Replies

Any post FCR warriors struggling with the cold?

I finished FCR a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8...

I finished FCR a year ago and in the past couple of months or so have begun to f...

Mandy56

•4 years ago

19 Replies

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Hearing loss+ balance problems

ive been on Ibrutinib for 11 months and has worked well but in the last month my hearing has seriously declined and had balance issues In the last month I.ve...

ive been on Ibrutinib for 11 months and has worked well but in the last month m...

Scammell124

•4 years ago

13 Replies

Nice gratitude video

https://vimeo.com/44131171?ref=fb-share&fbclid=IwAR3-gRtudb-SJQSYQmRQUIaGy4pMIjgZpwOcN_qZ4aukyPNAf4xWZM_GJyc

https://vimeo.com/44131171?ref=fb-share&fbclid=IwAR3-gRtudb-SJQSYQmRQUIaGy4pMIjg...

Judyanne

•4 years ago

6 Replies

For our USA Members: Calculating the Costs of Clinical Trials

Probably a must read if you’re considering a trial in USA. “Patients eager to contribute to research may not be fully aware of the hidden costs of trial...

Probably a must read if you’re considering a trial in USA. “Patients eager to co...

Jm954

Administrator•4 years ago

7 Replies

shingrix Where to get one ?

I have a very bad shingles on my back and my doctor recommended me shingrix , unfortunately it seems like it's unavailable in the uk. I will appreciate any...

I have a very bad shingles on my back and my doctor recommended me shingrix , un...

polomolo

•4 years ago

15 Replies

Nine months post chemo visit

So here I am. Back at what will soon be the largest blood cancer centre in Europe. The queue for the blood test today made you think the extra patients are...

So here I am. Back at what will soon be the largest blood cancer centre in Eur...

AdrianUK

•4 years ago

35 Replies

To start treatment or not? Please.

Just returned from a 3 month checkup with my oncologist. My labs are all stable, but not normal. WBC is 140. Not anemic. I have 11q deletion which presents...

Just returned from a 3 month checkup with my oncologist. My labs are all stable,...

bayside64

•4 years ago

9 Replies

Venetoclax Added to Ibrutinib in High-Risk CLL Achieves a High Rate of Undetectable Minimal Residual Disease.

December 8, 2019 ASH poster. There are lots of us on long term Ibrutinib who have had a good response but still have a small amount of residual disease. I...

December 8, 2019 ASH poster. There are lots of us on long term Ibrutinib who hav...

Jm954

Administrator•4 years ago

53 Replies

Mapping Comorbidity in CLL: Impact on Prognostic Factors, Treatment Patterns and Causes of Death

Dec 9th 2019 ASH Poster Lots of us have other illnesses (co-morbidities) as well as CLL and this group looked at the impact of these on survival. The photo...

Dec 9th 2019 ASH Poster Lots of us have other illnesses (co-morbidities) as well...

Jm954

Administrator•4 years ago

2 Replies

The TP53 mutational landscape in CLL is very complex

December 8, 2019 Interesting poster shedding a bit more light on the complexity of TP53 mutations and its independence from 17p deletion. "TP53 aberrations,...

December 8, 2019 Interesting poster shedding a bit more light on the complexity ...

Jm954

Administrator•4 years ago

3 Replies

please is anyone treating MCL (mantle cell lymphoma) ?

MCL on Ibrutinib only

1susiE

•4 years ago

7 Replies

New York City -- CLL Patient Support Group December 8 at 3:00pm.

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL...

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Gro...

lankisterguy

Volunteer•4 years ago

Be the first to reply

Hello Friends. I have friend I have check my blood test my lymphocyte is 18 in ...

George007

•4 years ago

2 Replies

I HAVE APPT WITH ONCO 3RD DECEMBER

Hi All I meet onco 2mrw for quarterly review. Blood reports of yesrerday are similar to previous one. WBC 18, HGB 13.1,PLAT225 , ALC 12. HBA1C 6.1( i can post...

Hi All I meet onco 2mrw for quarterly review. Blood reports of yesrerday are sim...

vinnet

•4 years ago

2 Replies

Update on my CLL after 12 months

I've just had a blood test and visit with my oncologist, 12 months after my first diagnosis. My CLL was on "watch and wait" as it was very low level and very...

I've just had a blood test and visit with my oncologist, 12 months after my firs...

Skyfli

•4 years ago

5 Replies

Prostate biopsy whilst on Flair trial for CLL

Hi My husband has been on the Flair trial for three and a had years now, currently doing ok but has had some major health issues during that time including...

Hi My husband has been on the Flair trial for three and a had years now, current...

Poohey

•4 years ago

8 Replies

Advice

Hi everyone. It has been awhile since I posted. I have been on Imbruvica for about 18 months. I’m doing very well with great blood work. However, last week I...

Hi everyone. It has been awhile since I posted. I have been on Imbruvica for abo...

migirlusa

•4 years ago

11 Replies

CD3xCD19 Dart Treatment Is Efficient in Venetoclax Resistant CLL and Reverses T Cell Dysfunction

DART (rather than CART) treatment could be come important in the future, especially for CLL where the T cells become exhausted and don't function...

DART (rather than CART) treatment could be come important in the future, especia...

Jm954

Administrator•4 years ago

5 Replies

A Phase 1/2 Study of Umbralisib, Ublituximab and Venetoclax in Patients with R/R CLL

Only small numbers of patients (21) but looks promising with potential for patients for cardiac issues. Umbralisib (Umbra) is a novel, highly-specific PI3Kδ...

Only small numbers of patients (21) but looks promising with potential for patie...

Jm954

Administrator•4 years ago

2 Replies

Next-Generation BTK Inhibitors and Why We Need Them

Source: Advancing the Role of BTK Inhibitors in B-Cell Malignancies: Expert Guidance for Clinical Management October 2019 Whilst Ibrutinib has been a...

Source: Advancing the Role of BTK Inhibitors in B-Cell Malignancies: Expert Guid...

Jm954

Administrator•4 years ago

1 Reply

EHA 2019: Dr. Maloney on CAR-T and Dr. Davids of Chemo-Immunotherapy combinations

David Maloney is world expert in CAR-T therapy and was one of my doctors when I got my genetically modified cells in Seattle last year. Please enjoy their...

David Maloney is world expert in CAR-T therapy and was one of my doctors when I ...

bkoffman

CLL CURE Hero•4 years ago

6 Replies

Spleen

Anyone having Spleen pain ? I was told by the location of my dull pain left side under rib cage daily bouts of pain .. friend Dr said...

Anyone having Spleen pain ? I was told by the location of my dull pain ...

lacroixx1

•4 years ago

4 Replies

Insect like bites due to CLL

Has anyone else encountered insect like bites due to CLL? Was there any tx that worked other than topical antihistamines? I was dx with CLL14 years ago and...

Has anyone else encountered insect like bites due to CLL? Was there any tx that...

KirbyBH

•4 years ago

3 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2019

Is creatine a bad idea?

Reporting from ASCO 2019 (yes ASCO, not ASH)

Any post FCR warriors struggling with the cold?

Hearing loss+ balance problems

Nice gratitude video

For our USA Members: Calculating the Costs of Clinical Trials

shingrix Where to get one ?

Nine months post chemo visit

To start treatment or not? Please.

Venetoclax Added to Ibrutinib in High-Risk CLL Achieves a High Rate of Undetectable Minimal Residual Disease.

Mapping Comorbidity in CLL: Impact on Prognostic Factors, Treatment Patterns and Causes of Death

The TP53 mutational landscape in CLL is very complex

please is anyone treating MCL (mantle cell lymphoma) ?

New York City -- CLL Patient Support Group December 8 at 3:00pm.

Sex related

I HAVE APPT WITH ONCO 3RD DECEMBER

Update on my CLL after 12 months

Prostate biopsy whilst on Flair trial for CLL

Advice

CD3xCD19 Dart Treatment Is Efficient in Venetoclax Resistant CLL and Reverses T Cell Dysfunction

A Phase 1/2 Study of Umbralisib, Ublituximab and Venetoclax in Patients with R/R CLL

Next-Generation BTK Inhibitors and Why We Need Them

EHA 2019: Dr. Maloney on CAR-T and Dr. Davids of Chemo-Immunotherapy combinations

Spleen

Insect like bites due to CLL

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