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All posts for October 2016

Ibrutinib and hair loss

I am 72 years old and have been on Ibrutinib for 3 months now. My hair is getting a little thin (quite a bit on my brush and in the shoer. I suppose it is a...

I am 72 years old and have been on Ibrutinib for 3 months now. My hair is gettin...

Mayor44

•8 years ago

13 Replies

Weight gain

After about 16 months of W and W I've now been on Imbruvica for 3 months. My weight loss was never extreme...235 down to 225 ( 6'0 male age 66 and my GP says "...

After about 16 months of W and W I've now been on Imbruvica for 3 months. My wei...

RJR1

•8 years ago

15 Replies

Healthy guts are swarming with bugs, so what do they do?

'Our gut does more than help us digest food; the bacteria that call our intestines home have been implicated in everything from our mental health and sleep,...

'Our gut does more than help us digest food; the bacteria that call our intestin...

AussieNeil

Administrator•8 years ago

4 Replies

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Flu vaccine and sweats

Diagnosed 2 years ago, on WandW and other than occasional day and night sweats, not really all that bothered by it. Even had a reduction on my Ly numbers....

Diagnosed 2 years ago, on WandW and other than occasional day and night sweats, ...

Hidden

•8 years ago

9 Replies

Real-world use of Ibrutinib by Dr George Follows 5 October 2016

We are very grateful to Dr George Follows for making the slides used at a presentation he gave to the UK CLL Forum on real-world use of ibrutinib on the 5th of...

We are very grateful to Dr George Follows for making the slides used at a presen...

Myrddin

•8 years ago

1 Reply

ASCO 2016: NIH CAR-T Trial

ASCO 2016: James Kochenderfer/NIH on Inducing Remissions in B-Cell Lymphoma:...

wmay13241

•8 years ago

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Spleen pain?

Hiya everyone. I was wondering if those of you with an enlarged spleen could let me know what it feels like? I have had a pinched feeling just under my left...

Hiya everyone. I was wondering if those of you with an enlarged spleen could let...

Cindy1462

•8 years ago

22 Replies

ASCO 2016: Dr. Susan O’Brien where she discusses frontline data on Acalabrutinib in CLL

We are 8 weeks out from the 2016 annual meeting of the American Society of Hematology and realize that we have quite a few interviews from the ASCO and EHA...

We are 8 weeks out from the 2016 annual meeting of the American Society of Hemat...

bkoffman

CLL CURE Hero•8 years ago

6 Replies

FLAIR Trial – Experiences post FCR – Recovery from Red Cell Cytopenia and Neutropenia

As I sit down to write this, having just been for my Flu jab, I realise how quickly time has gone by. Another year heading by. If you are new to CLL then have...

As I sit down to write this, having just been for my Flu jab, I realise how quic...

Ernest2

•8 years ago

17 Replies

Off Ibrutinib for nearly 4 months and still OK

Have been off the Ibrutinib now for nearly 4 months. (After 6 months of Rituximab and 8 months on Ib which was stopped due to painful side effects) My last...

Have been off the Ibrutinib now for nearly 4 months. (After 6 months of Rituxima...

romarin

•8 years ago

11 Replies

Night cramps

I was diagnosed in May 2011and am still on W and W. Blood counts are going the wrong way so maybe treatment is on the horizon but I have no other symptom. Just...

I was diagnosed in May 2011and am still on W and W. Blood counts are going the w...

Clovelly

•8 years ago

13 Replies

Second treatment looming

I ama 70 year old male living in South Africa and was diagnosed with CLL in January 2013. I had no symptoms that I was aware of and after a particularly nasty...

I ama 70 year old male living in South Africa and was diagnosed with CLL in Janu...

plett1234

•8 years ago

4 Replies

About to start FCR

Hi everyone, I have made the decision to accept FCR arm of trial even though I'd hoped for Ibrutinib. I'm 46 , mutated and have been w and w for five years....

Hi everyone, I have made the decision to accept FCR arm of trial even though I'd...

Kenn123

•8 years ago

15 Replies

How do I deal with a chest cold??

Hi everyone. I am in day 2 of having a chest cold, it's not horrible but its certainly not pleasant. My brother came down from B.C to visit me here in...

Hi everyone. I am in day 2 of having a chest cold, it's not horrible but its c...

Yolliyo

•8 years ago

6 Replies

BAP1

Following my private DNA test dose anyone know anything about BAP1 in Genoa Sequencing. I did DNA test and looked at my BAP1 sequance and My result are at...

Following my private DNA test dose anyone know anything about BAP1 in Genoa Sequ...

Hidden

•8 years ago

19 Replies

PLATELET Count

I'M having 178,000 platelet count. Is this normal or what? Am i safe?

princealter

•8 years ago

5 Replies

Treatment Day three (again)

Hi Posted my day 3 treatment details last night but Can't see it. Anyway 30 mins of Bendamustine Administered. No issues so all in all quite a smooth ride....

Hi Posted my day 3 treatment details last night but Can't see it. Anyway 30 mins...

Jacksc06

•8 years ago

8 Replies

Beth Baccy Mouth

Well as the fog of round 4 settles down to a mist I find myself beginning to move around like a normal human being. I can't quite face looking in the fridge or...

Well as the fog of round 4 settles down to a mist I find myself beginning to mov...

Bethan49

•8 years ago

5 Replies

Metformin, the diabetes drug developed from French lilac

Metformin is the most widely used drug to treat type 2 diabetes globally. More snippets from the article by Merlin Thomas, Adjunct Professor of...

Metformin is the most widely used drug to treat type 2 diabetes globally. More ...

AussieNeil

Administrator•8 years ago

18 Replies

Gardening is good for you - just be sure to take care to avoid infections and use chemicals wisely

Many people find that gardening brings particular pleasure, and here are two articles from The Conversation on the science behind this and gardening chemical...

Many people find that gardening brings particular pleasure, and here are two art...

AussieNeil

Administrator•8 years ago

3 Replies

shortness of breath

hi, is anyone like myself on ibrutinib . i am suffering with shortness of breath and feel exhausted, i am only on my 2nd month of taking ibrutinib, is this a...

hi, is anyone like myself on ibrutinib . i am suffering with shortness of breath...

bulldog123

•8 years ago

6 Replies

Anyone Know if this DNA is normal

DNA change from 185delAG to - Refers to BRCA1 - 2 mutaions. The only reason am asking AS other report had normal BUT this seem to have been flaged. Some say...

DNA change from 185delAG to - Refers to BRCA1 - 2 mutaions. The only reason am...

Hidden

•8 years ago

10 Replies

Move More: the evidence is stacking up - so let's get active!

I attended a lecture in Aberdeen this evening delivered by Dr Anna Campbell MBE which outlined the evidence underpinning the benefits of physical activity at...

I attended a lecture in Aberdeen this evening delivered by Dr Anna Campbell MBE ...

Mild-Rover

•8 years ago

5 Replies

Diagnosed with CLL

I am a 70 year old male, diagnosed yesterday with CLL. My symptons are exhaustion, shortness of breath. They also referred me to a Gastronenterologist because...

I am a 70 year old male, diagnosed yesterday with CLL. My symptons are exhaustio...

cemax

•8 years ago

7 Replies

Treatment Day 2.

Just got home from hospital. (8 Hours today). Today went much more smoothly than yesterday. No 'Episodes' today. The team continued to run extra fluids in...

Just got home from hospital. (8 Hours today). Today went much more smoothly than...

Jacksc06

•8 years ago

8 Replies

New App Settings

Not a medical condition but does anyone know if there is a way to switch the new app from portrait to landscape on an iPad?

Not a medical condition but does anyone know if there is a way to switch the new...

Salohcin

•8 years ago

4 Replies

wanting advise

this is all new to me, hope i can find a little bit of advise

bulldog123

•8 years ago

10 Replies

getting breathless

i am on ibrutinib,this is my second month taking it,what is worrying me is i am having shortness of breath sometimes when i an just sat,its comes and goes is...

i am on ibrutinib,this is my second month taking it,what is worrying me is i am ...

bulldog123

•8 years ago

5 Replies

Trebuchets, flying cows, and why you should care

This is an interesting post on the US Patient Power site....

BillyAndBob

•8 years ago

1 Reply

Uncontrolled bleeding events with Ibrutinib and in general

Hi all, On another forum I saw a comment by a patient who wisely advised wearing a bracelet bearing important information that could help medical personnel...

Hi all, On another forum I saw a comment by a patient who wisely advised wearing...

ThreeWs

•8 years ago

12 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for October 2016

Ibrutinib and hair loss

Weight gain

Healthy guts are swarming with bugs, so what do they do?

Flu vaccine and sweats

Real-world use of Ibrutinib by Dr George Follows 5 October 2016

ASCO 2016: NIH CAR-T Trial

Spleen pain?

ASCO 2016: Dr. Susan O’Brien where she discusses frontline data on Acalabrutinib in CLL

FLAIR Trial – Experiences post FCR – Recovery from Red Cell Cytopenia and Neutropenia

Off Ibrutinib for nearly 4 months and still OK

Night cramps

Second treatment looming

About to start FCR

How do I deal with a chest cold??

BAP1

PLATELET Count

Treatment Day three (again)

Beth Baccy Mouth

Metformin, the diabetes drug developed from French lilac

Gardening is good for you - just be sure to take care to avoid infections and use chemicals wisely

shortness of breath

Anyone Know if this DNA is normal

Move More: the evidence is stacking up - so let's get active!

Diagnosed with CLL

Treatment Day 2.

New App Settings

wanting advise

getting breathless

Trebuchets, flying cows, and why you should care

Uncontrolled bleeding events with Ibrutinib and in general

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