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CLL Support

23,253 members•39,949 posts

All posts for August 2018

Breast cancer is going to kill me

Have stage 4,breast,cancer not in liver or brain yet. Had to have a liter of cancer liquid extracted from beside my lung. Breathing got worse after. So painful...

Have stage 4,breast,cancer not in liver or brain yet. Had to have a liter of can...

Fluteplayer

•6 years ago

4 Replies

How to manage the copays for Ibrutinib with medicare.

Two years ago, my husband was diagnosed with CLL and now treatment is being recommended. His insurance is Medicare. The treatment that is recommended is...

Two years ago, my husband was diagnosed with CLL and now treatment is being reco...

brerrabbit

•6 years ago

22 Replies

CLL Ireland October event - psychological support for Irish patients.

Our #CLL community has told us that they need more Emotional Support. So on 19 October 2018 we're delighted to be hosting an Evening of Support with a talk by...

Our #CLL community has told us that they need more Emotional Support. So on 19 O...

Irishcll

•6 years ago

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Update on PSA TEST

Hubby saw his GP this afternoon, his prostate is enlarged, although he didn’t mention the blood test result. He is referring him to an urologist at the...

Hubby saw his GP this afternoon, his prostate is enlarged, although he didn’t me...

Susiecarer

•6 years ago

7 Replies

CLL Indolent

Do people live a near normal life expectancy with CLL if they are CD38 negative??

Do people live a near normal life expectancy with CLL if they are CD38 negative?...

J_88

•6 years ago

16 Replies

Infection, hospitalisation and future treatment with Ibrutinib or trial drug.

As many of you are aware I was hospitalised last Tuesday when I visited clinic and the good news is I am going home later today after responding to 5 days of...

As many of you are aware I was hospitalised last Tuesday when I visited clinic a...

Mick491

•6 years ago

24 Replies

Career change?

Hello all. I am 4 yrs diagnosed, stage 1 w&w. 54 yrs old, diagnosed with a routine cbc. I am not symptomatic except for fatigue and chronic congestion. I...

Hello all. I am 4 yrs diagnosed, stage 1 w&w. 54 yrs old, diagnosed with a rou...

Rachat35

•6 years ago

7 Replies

CLL

I am new here. Have had CLL for about 4 years. Just started Imbruvica 2 weeks ago with few side effects. The tiredness increased and I am to get my first...

I am new here. Have had CLL for about 4 years. Just started Imbruvica 2 weeks ...

tootsie2

•6 years ago

19 Replies

Risks of MRI Dyes

Since we all face repeated scans, on a US TV station today there was a piece covering risks of using MRI dyes. Probably others to read but here is one to look...

Since we all face repeated scans, on a US TV station today there was a piece cov...

Njsailorgirl

•6 years ago

14 Replies

CLL indolent

Hi guys was diagnosed a few months ago. Had a flow cytometry done and one of the markers tested was CD38. It doesn’t mention anything about the CD38 it just...

Hi guys was diagnosed a few months ago. Had a flow cytometry done and one of the...

NBA_Canada

•6 years ago

5 Replies

Immune system during fcr

Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are...

Hi all I am new to this site. My partner was diagnosed 5 years ago and just begu...

nugg9

•6 years ago

16 Replies

Can’t sleep because of congestion

What can I do about congestion? I Neto pot, use Flonase, sometime an antihistamine spray, homeopathics - nothing helps. I’m ok during the day when I’m...

What can I do about congestion? I Neto pot, use Flonase, sometime an antihistami...

dantetheinferno1

•6 years ago

20 Replies

We asked five experts: is walking enough exercise?

"We humans need to exercise in order to stay healthy. Exercise protects against disease and early death, and keeps us mobile and able to perform daily...

"We humans need to exercise in order to stay healthy. Exercise protects against ...

AussieNeil

Administrator•6 years ago

13 Replies

Hair loss

I have had a lot of hair loss since taking imbruvica. I keep telling the doctor and he says, it's not something that was reported.

I have had a lot of hair loss since taking imbruvica. I keep telling the doctor...

CuseNurse

•6 years ago

12 Replies

Three disorders at the same time?

Was told I have Mantel Cell Lymphoma, Marginal Zone Lymphoma, AND Atypical CLL, all at the same time. They missed it for two years. Numerous sinus infections...

Was told I have Mantel Cell Lymphoma, Marginal Zone Lymphoma, AND Atypical CLL, ...

lsutigers2018

•6 years ago

9 Replies

Platelet count

My platelet count in April2018 was 323. I am a 68 year old female. Is number good for me and do platelet counts decrease with age?

My platelet count in April2018 was 323. I am a 68 year old female. Is number goo...

Imarwp

•6 years ago

2 Replies

Coconut Water

Has anyone else used coconut water while being treated for CLL? Coconut water has a pleasant taste and easier to consume than regular water. I am being...

Has anyone else used coconut water while being treated for CLL? Coconut water h...

umpireman

•6 years ago

44 Replies

What are B-symptoms?

A cross post from Shar0n (Volunteer on Non Hodgkins Lymphoma Friends)...

lankisterguy

Volunteer•6 years ago

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Health Check: should I take vitamin C or other supplements for my cold?

Study evidence for the effectiveness of Vitamin C, Zinc, Garlic, Probiotics, Echinacea and ....... Chicken Soup in reducing the incidence or recovery time for...

Study evidence for the effectiveness of Vitamin C, Zinc, Garlic, Probiotics, Ech...

AussieNeil

Administrator•6 years ago

8 Replies

sudden loss on hearing on one side

Since a week i experienced a loss of hearing on my right side. Today i had an appointment with a otorhinolaryngologist , which removed wax from my ear. But i...

Since a week i experienced a loss of hearing on my right side. Today i had an ap...

antonb

•6 years ago

7 Replies

My teeth and gume

My teeth and gums.. Are beginning to hurt alot. No bleeding just pain. I'm on imbruvica...maybe a side affect...

My teeth and gums.. Are beginning to hurt alot. No bleeding just pain. I'm on im...

Susanjustice62

•6 years ago

2 Replies

Melanoma

We ha e to protect against sun exposure. https://www.sciencedaily.com/releases/2018/08/180809112425.htm Dennis, 71, Ibrutinib

We ha e to protect against sun exposure. https://www.sciencedaily.com/releases/2...

Fant1924

•6 years ago

3 Replies

Survey for patients and carers living in Ireland

Hi all If your living in Ireland please take the time to fill in this survey which will help effect change for patients and carers living with Cancer. We in...

Hi all If your living in Ireland please take the time to fill in this survey whi...

Irishcll

•6 years ago

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Cll/fungal infection of the lung

Hi everyone... I have been in the hospital 10 out of the past 15 days. First admission was for neutropenic fever which was a 5 day admission. I went home...

Hi everyone... I have been in the hospital 10 out of the past 15 days. First a...

Ladydi49

•6 years ago

13 Replies

Dossage for Every Other Day IB

I'm taking 420 mg (1 capsule) - - full strength - - every other day.

cll2013

•6 years ago

4 Replies

Heat intolerance/rash

Hi. Thank you for letting me join. At this point I'm looking for answers so hopefully my almost 2 year old son can have some of his normal life back. Around 6...

Hi. Thank you for letting me join. At this point I'm looking for answers so hope...

Agreisz

•6 years ago

1 Reply

Do I have to drink eight glasses of water per day?

The following advice is for people in good health and importantly, not those being treated for CLL. If you are undergoing treatment, then it is very important...

The following advice is for people in good health and importantly, not those bei...

AussieNeil

Administrator•6 years ago

21 Replies

Low Platelets count.

I am cll patient , formerly treated with FR. ( two years ago). I am experienced some low platelets count. When reached 56 K, the doctor decided to put me on...

I am cll patient , formerly treated with FR. ( two years ago). I am experienced...

tropicsurvivor

•6 years ago

3 Replies

Bristol Members Conference

The meeting summary together with the videos and slides of the main presentations by Prof Chris Fegan and Dr Stephen Man are now available on the main CLLSA...

The meeting summary together with the videos and slides of the main presentation...

Myrddin

•6 years ago

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Imbrevica rash

Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My...

Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. ...

Art2018

•6 years ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2018

Breast cancer is going to kill me

How to manage the copays for Ibrutinib with medicare.

CLL Ireland October event - psychological support for Irish patients.

Update on PSA TEST

CLL Indolent

Infection, hospitalisation and future treatment with Ibrutinib or trial drug.

Career change?

CLL

Risks of MRI Dyes

CLL indolent

Immune system during fcr

Can’t sleep because of congestion

We asked five experts: is walking enough exercise?

Hair loss

Three disorders at the same time?

Platelet count

Coconut Water

What are B-symptoms?

Health Check: should I take vitamin C or other supplements for my cold?

sudden loss on hearing on one side

My teeth and gume

Melanoma

Survey for patients and carers living in Ireland

Cll/fungal infection of the lung

Dossage for Every Other Day IB

Heat intolerance/rash

Do I have to drink eight glasses of water per day?

Low Platelets count.

Bristol Members Conference

Imbrevica rash

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