Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for August 2018

Ibrutinib victory

To all of you who supported my petition to get life saving cancer drug called Ibrutinib available to people in my situation, I have been informed by Sean...

To all of you who supported my petition to get life saving cancer drug called Ib...

Mick491

•6 years ago

48 Replies

Effect of Taking IB Every Other Day

I had not taken any meds on a regular basis until starting IB 2 1/2 years ago. In the rare instance over my 75 years that I required an antibiotic for a...

I had not taken any meds on a regular basis until starting IB 2 1/2 years ago. ...

cll2013

•6 years ago

5 Replies

Apologize for lateness of reply

No experience that I am sure about with the two together. For last two years, been doing quite well just on Imbruvica. Hope u r doing well Alvin

No experience that I am sure about with the two together. For last two years, be...

Tovtovtov

•6 years ago

5 Replies

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New here

Hello fellow Cllers. I am w and w and a 49 year old male. I have had four infections since diagnosed 16 mo ago. C diff (horrible), pneumonia and 2 sinus...

Hello fellow Cllers. I am w and w and a 49 year old male. I have had four infe...

Dew77

•6 years ago

9 Replies

Isn't it time for some Good NEWS??

My husband started Ibrutinib in April after his BR chemo failed. He is 11q deleted. We were just at the doctor's this week, and his blood work came back with...

My husband started Ibrutinib in April after his BR chemo failed. He is 11q delet...

kathymac52

•6 years ago

27 Replies

IMBRUVICA- HOW LONG TO SEE RESULTS

Hello my husband has been on Imbruvica now for 2 months. At first his white counts when higher as they told us it would. Then two weeks later it started to...

Hello my husband has been on Imbruvica now for 2 months. At first his white coun...

skunkbay53

•6 years ago

7 Replies

CLL

I am curious. Has anyone out there started with Venetoclax as the first line in treatment of CLL with 17p deletion? Cannot take Ibrutinib due to history of...

I am curious. Has anyone out there started with Venetoclax as the first line in...

17pdeletion

•6 years ago

1 Reply

Probiotics not always beneficial and may cause brain fogginess and severe bloating

Experiencing brain fog/fatigue and severe bloating and using probiotics? It may not be CLL causing these symptoms. From a New Atlas article about research...

Experiencing brain fog/fatigue and severe bloating and using probiotics? It may...

AussieNeil

Administrator•6 years ago

4 Replies

Cardiac arrest

Has anyone had a cardiac arrest to taking the imbruvica?

rwboothby

•6 years ago

14 Replies

Update but still not ibrutinib

Hi all I know some of you are interested in my progress. NHS England are due to publish the results of thier review on Ibrutinib, but that's still not...

Hi all I know some of you are interested in my progress. NHS England are due to ...

Mick491

•6 years ago

35 Replies

Travel Insurance Excluding CLL

My Second post on insurance. I just got a quote from Aviva for a 15 day trip to the US. They excluded my CLL but said I could still travel on their insurance...

My Second post on insurance. I just got a quote from Aviva for a 15 day trip to...

ScruffyDuck

•6 years ago

28 Replies

Travel Insurance Yet Again

Sorry I am sure this comes around all the time but I am finding it hard to get a good quote for trips to the US. I used World First until they refused me last...

Sorry I am sure this comes around all the time but I am finding it hard to get a...

ScruffyDuck

•6 years ago

28 Replies

Saturday 8th September, Malvern 'Spot Leukaemia', fun dog show, picnic and dog walk

Save in your diary - If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness...

Save in your diary - If you are in the Midlands come and join us in the first we...

HAIRBEAR_UK

Founder Admin•6 years ago

Be the first to reply

Please Help to Update the ACOR CLL Doctor List for CLL Doctors Outside the USA and Canada

Subject: CLL Doctors Outside the USA and Canada Date: Sun, 5 Aug 2018 Hello List Members, Although every attempt is made to keep the ACOR CLL Doctor List...

Subject: CLL Doctors Outside the USA and Canada Date: Sun, 5 Aug 2018 Hello L...

lankisterguy

Volunteer•6 years ago

2 Replies

Ibrutinib - 4 months in (FLAIR)

Neutropils now at 1.5 (I though they would only go up to 1.2 because of the Ibrutinib), everything else on the up as well. What a wonderful drug.

Neutropils now at 1.5 (I though they would only go up to 1.2 because of the Ibru...

zaax

•6 years ago

9 Replies

Anxiety

This is my concern...anxious about my appointment...how do you calm down?

Pat351v

•6 years ago

32 Replies

First hematologist appt tomorrow

I see a hematologist tomorrow for the first time. I feel anxious. I feel absolutely fine but my wbc is 42.6...what should i expect from this appointment?...

I see a hematologist tomorrow for the first time. I feel anxious. I feel absol...

Pat351v

•6 years ago

10 Replies

Dr. Wierda on the paradigm shift in CLL.

Dr. Wierda is my doctor and in the short time I met with him in 2017, I didn’t get the impression he was the type to sugar coat anything. He tells it like it...

Dr. Wierda is my doctor and in the short time I met with him in 2017, I didn’t g...

baq724

•6 years ago

13 Replies

my nephew is 6 year of old and suffering high wbc count it almost 100000 is it blood cancer??plz explain me

Plz give me ans about this

mayur_fr

•6 years ago

1 Reply

Side effects CLL

It has been a few weeks since I have posted : Feeling all kind of things : Insomnia: sitting here it is one day without sleeping: Depression : still doing Ok...

It has been a few weeks since I have posted : Feeling all kind of things : Inso...

Jonah348

•6 years ago

6 Replies

Meningitis and influenza vaccines

Hello everyone, does anyone know if a CLL diagnosed person can take meningitis and influenza vaccine?

Hello everyone, does anyone know if a CLL diagnosed person can take meningitis a...

JA14

•6 years ago

6 Replies

He did it!

Hi, Stan Kurtz and his team, with help from so many of you, Did it. He swam the Catalina channel and raised his goal of over $25,000 for the CLL Society! It...

Hi, Stan Kurtz and his team, with help from so many of you, Did it. He swam the ...

bkoffman

CLL CURE Hero•6 years ago

3 Replies

Lymph nodes

I have cll on watch/wait, I have a painful swollen lymph node on back of my neck. I have had swollen nodes on my neck but not back of neck. Have anyone...

I have cll on watch/wait, I have a painful swollen lymph node on back of my neck...

Rottie1934

•6 years ago

2 Replies

An Introduction

Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Currently my hematologist has me on a Wait & Watch routine and seeing me every 6...

Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Current...

NWcllfighter

•6 years ago

9 Replies

Thin skin...Roseacea

Diagnosed 5 plus years ago, on 420 mg Imbruvica daily now for 2 years. I've also got a facial skin condition, Roseacea ( think WC Fields ) but never to that...

Diagnosed 5 plus years ago, on 420 mg Imbruvica daily now for 2 years. I've also...

RJR1

•6 years ago

17 Replies

Dana-Farber Clinical Trial for Non-pre-treated patients

I had mentioned the trial I'm in using Acalabrutinib, Obinutuzumab, and Ventoclax. Here's the information from ClinicalTrials.gov....

I had mentioned the trial I'm in using Acalabrutinib, Obinutuzumab, and Ventocla...

Lily_Pad_Master

•6 years ago

10 Replies

Info needed

I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your...

I know when you have fcr your immune system is destroyed and infections are a gr...

dandelup

•6 years ago

2 Replies

CSR - CLL

Hello. I have had CLL since 2012. Recently diagnosed with Chronic Central Serous Retinopathy in my right eye, which is a permanent build-up of fluid behind...

Hello. I have had CLL since 2012. Recently diagnosed with Chronic Central Serou...

Lapo

•6 years ago

19 Replies

What can I expect this time round.

Hi everyone. Been off line for a while due to various little issues.Knew there was a problem,but this week its hit home big style and now I have a worrying few...

Hi everyone. Been off line for a while due to various little issues.Knew there w...

saintjohn

•6 years ago

10 Replies

Finally in treatment!

Hi everyone. I used to be RK66 but I forgot my password and the email I used 3 years ago, so meet the new me....RK69. After 6 years of watch and wait I...

Hi everyone. I used to be RK66 but I forgot my password and the email I used 3 ...

RK69

•6 years ago

15 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2018

Ibrutinib victory

Effect of Taking IB Every Other Day

Apologize for lateness of reply

New here

Isn't it time for some Good NEWS??

IMBRUVICA- HOW LONG TO SEE RESULTS

CLL

Probiotics not always beneficial and may cause brain fogginess and severe bloating

Cardiac arrest

Update but still not ibrutinib

Travel Insurance Excluding CLL

Travel Insurance Yet Again

Saturday 8th September, Malvern 'Spot Leukaemia', fun dog show, picnic and dog walk

Please Help to Update the ACOR CLL Doctor List for CLL Doctors Outside the USA and Canada

Ibrutinib - 4 months in (FLAIR)

Anxiety

First hematologist appt tomorrow

Dr. Wierda on the paradigm shift in CLL.

my nephew is 6 year of old and suffering high wbc count it almost 100000 is it blood cancer??plz explain me

Side effects CLL

Meningitis and influenza vaccines

He did it!

Lymph nodes

An Introduction

Thin skin...Roseacea

Dana-Farber Clinical Trial for Non-pre-treated patients

Info needed

CSR - CLL

What can I expect this time round.

Finally in treatment!

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