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CLL Support

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All posts for July 2019

Acerta trial

I’m being assessed for this trial but if I get put on 3rd arm fcr can I decline and go on flair trial I don’t want chemo

I’m being assessed for this trial but if I get put on 3rd arm fcr can I decline ...

Yidarmy69

•5 years ago

26 Replies

What is CAR-T therapy? An expert explains in simple terms

Not specific to CLL but informative. CAR-T therapy is a completely new type of therapy that uses the immune system to kill cancer cells. In some cases it has...

Not specific to CLL but informative. CAR-T therapy is a completely new type of t...

Jm954

Administrator•5 years ago

3 Replies

Anyone have a problem getting back on Ibruitinib after two weeks off?

I developed bad mouth sores and transient oral infection from having my teeth cleaned while my Neutrophils were a little below the fence. My oncologist took me...

I developed bad mouth sores and transient oral infection from having my teeth cl...

Catnap7

•5 years ago

14 Replies

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Advances in drug‐based therapies in chronic lymphocytic leukemia and future prospects

First published: 08 February 2019 in Advances in Cell and Gene Therapy Journal Chronic lymphocytic leukemia (CLL) has experienced a revolution over the past...

First published: 08 February 2019 in Advances in Cell and Gene Therapy Journal C...

Jm954

Administrator•5 years ago

8 Replies

Association of gene mutations with time‐to‐first treatment in 384 treatment‐naive chronic lymphocytic leukaemia patients

First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors...

First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately...

Jm954

Administrator•5 years ago

6 Replies

Mode of Progression After Frontline Treatment Predicts Clinical Outcomes in Patients With CLL

July 15, 2019 Patients with chronic lymphocytic leukemia (CLL) who progress with lymphadenopathy after frontline treatment may experience inferior clinical...

July 15, 2019 Patients with chronic lymphocytic leukemia (CLL) who progress wit...

Jm954

Administrator•5 years ago

3 Replies

Scoring System for the Risk of Heart Problems in CLL Patients Treated with Ibrutinib: An Italian Model

An Italian scoring system worked better than 2 other risk models for predicting which patients with chronic lymphocytic leukemia (CLL) patients who were...

An Italian scoring system worked better than 2 other risk models for predicting ...

Jm954

Administrator•5 years ago

6 Replies

Factors affecting pricing for Ibrutinib and Venetoclax

The gaming of the US Patent system by Big Pharma makes critical drugs very expensive....

The gaming of the US Patent system by Big Pharma makes critical drugs very expen...

Indolent

•5 years ago

15 Replies

Lately having trouble holding things ...

Does have trouble holding things (anything light or heavy) ? Maybe all in my mind but I have been diagnosed with CLL for 3 years now with a Watch and Wait...

Does have trouble holding things (anything light or heavy) ? Maybe all in my min...

Hidden

•5 years ago

6 Replies

Symptoms not characteristic of CLL and worked up exhaustively. Sound familiar to anyone.

Bladder problems, lesions and bleeding, which CLL doc believes are not CLL connected. Has anyone had this problem (also fatigue, low white and red blood count,...

Bladder problems, lesions and bleeding, which CLL doc believes are not CLL conne...

Odale

•5 years ago

14 Replies

Nodes on scalp only symptom

Hi I have CLL/SLL my blood work is good all within range, the few that are out of range are only minimal out of range, nothing the Dr. is concerned about. My...

Hi I have CLL/SLL my blood work is good all within range, the few that are out o...

meggylng

•5 years ago

11 Replies

Bad head cold, sore throat - must medicate?

I don't like to take antibiotics unnecessarily... this is first head cold I've had in a year or more... I'm W&W.... should I wait it out (pretty miserable) use...

I don't like to take antibiotics unnecessarily... this is first head cold I've h...

Butitisme

•5 years ago

7 Replies

Bad tooth and ibrutinib

Has anyone on ibrutinib experienced a bad tooth that could not be fixed and needed to be pulled. And this is with a white count over 300,000.

Has anyone on ibrutinib experienced a bad tooth that could not be fixed and need...

oldguy68

•5 years ago

27 Replies

Zap 70 negative

I’ve now been on watch and wait for 8 years. Looking back at some old test results I read zap 70 negative. Not sure if that’s good. My wbc is now over 80 but...

I’ve now been on watch and wait for 8 years. Looking back at some old test resul...

Hazel33

•5 years ago

4 Replies

Ibrutinib and pets

My wife just started Ibrutinib 3 days ago. We have dogs and indoor only cats. I am the one who does poop patrol for the dogs but she often looks after the...

My wife just started Ibrutinib 3 days ago. We have dogs and indoor only cats. I ...

Kshinester

•5 years ago

22 Replies

BR and Skin rash

20 days after the first cycle, my father has developed a rash over entire body. Did anyone else experience this?

20 days after the first cycle, my father has developed a rash over entire body. ...

Haider98

•5 years ago

16 Replies

After a good week another bad info.

After 81/2 month on ibrutinib i posted last week ,that my labs were great and CT showed a dramatic shrinkage of lymph nodes.. I did a echocardiogram ...rutine...

After 81/2 month on ibrutinib i posted last week ,that my labs were great and C...

antonb

•5 years ago

6 Replies

Imbruvica

Hi there. This is Rosa. I've been on Imbruvica now for 4 weeks and to my surprise have had minor side effects. So, I have questions. 1. I get blisters in...

Hi there. This is Rosa. I've been on Imbruvica now for 4 weeks and to my surpr...

oso7672

•5 years ago

6 Replies

The sickness within Big Pharma

The US patent system was originally intended to protect the little guy from being trampled upon by a bigger and well funded competitor. In practice, it has...

The US patent system was originally intended to protect the little guy from bein...

Indolent

•5 years ago

9 Replies

Rx costs

I have seen how much some of this medicine can cost. I am still in W&W. Does anyone know if Medicare covers it?

I have seen how much some of this medicine can cost. I am still in W&W. Does any...

Txsgrl

•5 years ago

53 Replies

New Yorker article about car-t therapy

I just came across this and thought it might be of interest to the community. Here’s a link:...

I just came across this and thought it might be of interest to the community. H...

Sunfishjoy

•5 years ago

5 Replies

fish testing or lack of

Hi, I'm new to this group. Was diagnosed in 2011 and had first treatment of six rounds of FCR in 2013. Remission was about two and a half years. Have been on...

Hi, I'm new to this group. Was diagnosed in 2011 and had first treatment of six ...

rubberlegs68

•5 years ago

12 Replies

Juicing

Has anyone tried juicing for CLL? Just wondering if this would help. Thank you in advance.

Has anyone tried juicing for CLL? Just wondering if this would help. Thank you ...

Llgarden

•5 years ago

10 Replies

How long is FISH test is valid?

Does anyone have an idea on how long the FISH test is valid and how often do we need to repeat it. I had one done in November 2017 and my oncologist want me to...

Does anyone have an idea on how long the FISH test is valid and how often do we ...

Bowie1957

•5 years ago

16 Replies

SLL and multiple myeloma

I have stage 4 SLL . And now am being tested for multiple myeloma. Anyone here have both CLL or SLL and multiple myeloma? If so what were your treatments?

I have stage 4 SLL . And now am being tested for multiple myeloma. Anyone here h...

teknomek

•5 years ago

12 Replies

Rock the treatment

I never knew things like this existed. I received one of these from a friend today. Needless to say it brought a huge smile on my face....

I never knew things like this existed. I received one of these from a friend to...

DaveGH

•5 years ago

6 Replies

Change of treatment from ibrutanib to Venetoclax. Progression of CLL?

My husband has been in the Flair trial for the past three years. Recently he had to have a pleural effusion drained on his right lung. Today we have been told...

My husband has been in the Flair trial for the past three years. Recently he had...

Poohey

•5 years ago

14 Replies

Ibrutinib and wbc count

How do i know when it’s working?

lronnebeck

•5 years ago

9 Replies

High white count, need advice

I just got back from my appointment at the Moffit and my white count shot up to 178K with lymphocytes at 167K. In April my total wbc was 76 and my lymphocytes...

I just got back from my appointment at the Moffit and my white count shot up to ...

jjaarons

•5 years ago

11 Replies

Ask for advice

Hello, I’m taking Imbruvica 1.5 years. My result is good, but since then had Cdiff infection and 4 times UTI. Can anyone recommend me any cure ?

Hello, I’m taking Imbruvica 1.5 years. My result is good, but since then had Cdi...

farber

•5 years ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2019

Acerta trial

What is CAR-T therapy? An expert explains in simple terms

Anyone have a problem getting back on Ibruitinib after two weeks off?

Advances in drug‐based therapies in chronic lymphocytic leukemia and future prospects

Association of gene mutations with time‐to‐first treatment in 384 treatment‐naive chronic lymphocytic leukaemia patients

Mode of Progression After Frontline Treatment Predicts Clinical Outcomes in Patients With CLL

Scoring System for the Risk of Heart Problems in CLL Patients Treated with Ibrutinib: An Italian Model

Factors affecting pricing for Ibrutinib and Venetoclax

Lately having trouble holding things ...

Symptoms not characteristic of CLL and worked up exhaustively. Sound familiar to anyone.

Nodes on scalp only symptom

Bad head cold, sore throat - must medicate?

Bad tooth and ibrutinib

Zap 70 negative

Ibrutinib and pets

BR and Skin rash

After a good week another bad info.

Imbruvica

The sickness within Big Pharma

Rx costs

New Yorker article about car-t therapy

fish testing or lack of

Juicing

How long is FISH test is valid?

SLL and multiple myeloma

Rock the treatment

Change of treatment from ibrutanib to Venetoclax. Progression of CLL?

Ibrutinib and wbc count

High white count, need advice

Ask for advice

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