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CLL Support

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All posts for June 2017

Neutropenia problems - Non-Hodgkins Lymphoma

My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemotherapy using rituximab viusimilar and bendamusten drugs, after 3 weeks her...

My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemo...

gaby1953

•7 years ago

6 Replies

"New blood cancer study announces 'outstanding' results"

This discusses the results from trials over the last three years, carried out by a group headed by my former consultant:...

This discusses the results from trials over the last three years, carried out by...

deveritt

•7 years ago

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High CRP levels

Hi all, just a quick question, I was diagnosed with CLL last year and I'm on w&w, have enlarged lymph nodes all above the diaphragm area. I had a recent blood...

Hi all, just a quick question, I was diagnosed with CLL last year and I'm on w&w...

Mrtim

•7 years ago

4 Replies

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Compassionate Community Members

I feel so blessed to have found this compassionate and knowledgeable community. Thank you for sharing and helping me navigate through this disease of ours....

I feel so blessed to have found this compassionate and knowledgeable community. ...

ReneeSusan

•7 years ago

6 Replies

IVIG with Imbruvica

I have been on IVIG 10+ years, starting with only cold seasonal treatment. I have been on IVIG 30 grams q 28 days continuously for almost 6 years. I started...

I have been on IVIG 10+ years, starting with only cold seasonal treatment. I ha...

W00dfin

•7 years ago

7 Replies

Help with Recent CLL/SLL and lack of information from hospital

Hello, I am looking for some guidance please. I have now been informed after a lymph node biopsy in March 17 that I have low grade CLL/SLL by my hematologist....

Hello, I am looking for some guidance please. I have now been informed after a l...

Hippy16

•7 years ago

5 Replies

SLL 13q deleted and prostrate issues

I'm on w/w for about 15 months. My hemo/oncologist thinks I may not need treatment for a couple of years at least, but...... My nodes are all swollen but...

I'm on w/w for about 15 months. My hemo/oncologist thinks I may not need treatme...

Awksom

•7 years ago

27 Replies

ASH 2016: Dr. Wiestner on Predicting Ibrutinib resistance

This week I'm posting the final installment of my 3-part interview with Dr. Adrian Wiestner from the NIH where we discussed which CLL patients are more likely...

This week I'm posting the final installment of my 3-part interview with Dr. Adri...

bkoffman

CLL CURE Hero•7 years ago

2 Replies

What happened ??

I have not received an email from health unlocked since the 23rd of this month...can't figure out why! The first thing i read each morning is this...

I have not received an email from health unlocked since the 23rd of this month.....

Nanno77

•7 years ago

6 Replies

Back to the community

Hi I'm Sharron I joined a couple of years ago when first diagnosed withCLL and I've finally go over the shock!!! I want to catch up with all the latest info on...

Hi I'm Sharron I joined a couple of years ago when first diagnosed withCLL and I...

shsrron

•7 years ago

4 Replies

Need advice on treatment options for relapsed SLL

I will be going for a follow-up visit with my specialist at UPENN after new blood work to check for mutations and to discuss treatment options. My questions...

I will be going for a follow-up visit with my specialist at UPENN after new bloo...

ReneeSusan

•7 years ago

9 Replies

Cannabinoids shown to enhance chemotherapy treatment.

I know there are some here who have expressed an interest in this subject so I thought I would share this article that I came across. "New research has...

I know there are some here who have expressed an interest in this subject so I t...

Redlion

•7 years ago

3 Replies

Acalabrutinib results, two years this coming August 3.

It has been almost two years since I began the trial with Acalabrutinib, my fourth round of treatment. My counts are all within normal range, and my CD19 has...

It has been almost two years since I began the trial with Acalabrutinib, my four...

Ramses

•7 years ago

4 Replies

Update on the anaemia problem

Hi there all you clld-ers! For those who have been interested in the possible treatment for anaemia in CLL, an interesting development. It's probably due to...

Hi there all you clld-ers! For those who have been interested in the possible tr...

catmad1

•7 years ago

10 Replies

I've just reviewed treatments and am more confused!

The range of medical opinions and videos, combined with and problems reading long posts at the moment (various reasons) are beginning to cause me some degree...

The range of medical opinions and videos, combined with and problems reading lon...

deveritt

•7 years ago

10 Replies

High grade fever inCLL

What we will do for the fever plz reply soon.nearly two weeks now.

Rutba

•7 years ago

4 Replies

New poster... Tirabrutinib study

Hello. I'm enrolled in a study at OHSU that is evaluating tirabrutinib (ONO/gs-4059) in combination with various other treatments. My arm of the study is for...

Hello. I'm enrolled in a study at OHSU that is evaluating tirabrutinib (ONO/gs-...

clljon

•7 years ago

18 Replies

Bariatric surgery

Hi, has anyone had bariatric surgery after being diagnosed with cll. Thanks.

Lisabean

•7 years ago

10 Replies

Ibrutinib failure as a result of progressive CLL or Richter's Transformation

This week I'm posting another interview that took place at ASH 2016 with Dr. Adrian Wiestner from the NIH where we discussed ibrutinib failure as a result of...

This week I'm posting another interview that took place at ASH 2016 with Dr. Adr...

bkoffman

CLL CURE Hero•7 years ago

2 Replies

Scientists say antimicrobial soaps are harmful and don't work

Frequent had washing to avoid infection is of paramount importance to us, but it's hard to beat plain old soap where possible (solid, liquid or foam), with...

Frequent had washing to avoid infection is of paramount importance to us, but it...

AussieNeil

Administrator•7 years ago

2 Replies

Any feel strange dull pain in lymph nodes in treatment as they clear out?

I am on both Imbruvica and full Venetoclax now. I on my 6th cycle of the clinical trial. Over all I have been very good. My numbers have rapidly gone to...

I am on both Imbruvica and full Venetoclax now. I on my 6th cycle of the clinica...

Hoffy

•7 years ago

23 Replies

HOW DO WE DETERMINE MUTATION STATUS?

How do you determine your CLL mutation status? I was told that I was unmutated. If I am trisomy 12 positive, is that enough to conclude that I am...

How do you determine your CLL mutation status? I was told that I was unmutated...

jettyguy1

•7 years ago

17 Replies

Ibrutinib Venetoclax question

Anyone out there hear anything about Dr. Kanti Rai starting the I/V trial like MD Anderson?

Anyone out there hear anything about Dr. Kanti Rai starting the I/V trial like M...

MPL462

•7 years ago

4 Replies

Monoclonal B-cell lymphocytosis or MBL and a new clinical trial for those resistant to ibrutinib and more

Hi, This week I'm posting an interview that took place at ASH 2016 with Dr. Neil Kay from the Mayo Clinic in Rochester, MN where we discussed monoclonal B-cell...

Hi, This week I'm posting an interview that took place at ASH 2016 with Dr. Neil...

bkoffman

CLL CURE Hero•7 years ago

Be the first to reply

Bone marrow transplant on the cards

Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good...

Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line war...

KAS8

•7 years ago

9 Replies

IVIG infusion

Just wondering how people did with IVIG infusions. I've had lots of sinus infections over the past 3 years so doc thought I should start IVIG infusions. I am...

Just wondering how people did with IVIG infusions. I've had lots of sinus infect...

Huckfin1

•7 years ago

15 Replies

4 weeks to go

Hi All I was out this weekend getting ready for the Cycle ride and I think why am I doing this. I was struggling it was hot why bother ......... Then I...

Hi All I was out this weekend getting ready for the Cycle ride and I think why a...

TheFlyer

•7 years ago

7 Replies

Cll and medication and side affects

All those on Imbruvica - I am being treated for cll. I have been on Imbruvica for 7 months. My question - Has anyone experienced a viral type (symptoms)...

All those on Imbruvica - I am being treated for cll. I have been on Imbruvica...

578999lme

•7 years ago

6 Replies

Bendamustine-Rituximab - When do cytopenias disappear? During treatment? Post-treatment?

Has anyone here done BR (Bendamustine-Rituximab) and actually felt great/normal afterwards? I.e., gotten their life back as a result of this treatment? No...

Has anyone here done BR (Bendamustine-Rituximab) and actually felt great/normal ...

PlanetaryKim

•7 years ago

12 Replies

Any thoughts?

I was diagnosed with cll in 2013. I am new to this site. My numbers continue to go up. Any thoughts on diet that might help? When should I start chemo or...

I was diagnosed with cll in 2013. I am new to this site. My numbers continue t...

Fiddlegal

•7 years ago

11 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2017

Neutropenia problems - Non-Hodgkins Lymphoma

"New blood cancer study announces 'outstanding' results"

High CRP levels

Compassionate Community Members

IVIG with Imbruvica

Help with Recent CLL/SLL and lack of information from hospital

SLL 13q deleted and prostrate issues

ASH 2016: Dr. Wiestner on Predicting Ibrutinib resistance

What happened ??

Back to the community

Need advice on treatment options for relapsed SLL

Cannabinoids shown to enhance chemotherapy treatment.

Acalabrutinib results, two years this coming August 3.

Update on the anaemia problem

I've just reviewed treatments and am more confused!

High grade fever inCLL

New poster... Tirabrutinib study

Bariatric surgery

Ibrutinib failure as a result of progressive CLL or Richter's Transformation

Scientists say antimicrobial soaps are harmful and don't work

Any feel strange dull pain in lymph nodes in treatment as they clear out?

HOW DO WE DETERMINE MUTATION STATUS?

Ibrutinib Venetoclax question

Monoclonal B-cell lymphocytosis or MBL and a new clinical trial for those resistant to ibrutinib and more

Bone marrow transplant on the cards

IVIG infusion

4 weeks to go

Cll and medication and side affects

Bendamustine-Rituximab - When do cytopenias disappear? During treatment? Post-treatment?

Any thoughts?

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