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CLL Support

22,532 members • 38,709 posts

All posts for April 2016

Kinesics- Proxemics - the Existential Phenomenologist

DAD, Social worker, CCL on W&W - juggling work, travel, hobbies and family panic about CLL. Existential-Phenomenologist by profession (Being, Being in the...

DAD, Social worker, CCL on W&W - juggling work, travel, hobbies and family panic...

Meic13

•8 years ago

15 Replies

CLL and Hives

Recently diagnosed and feeling the fear. I thought I was a healthy 40 yr old. But last year started getting hives all the time. Not to mention my glands in my...

Recently diagnosed and feeling the fear. I thought I was a healthy 40 yr old. Bu...

AM75

•8 years ago

33 Replies

New to the group

I was diagnosed with CLL in October 2015. In March of this year I saw my gp....took blood work.....my WBC was down by 4 and one other was down...

I was diagnosed with CLL in October 2015. In March of this year I saw my gp.......

mamajama

•8 years ago

4 Replies

Want to take advantage of all our features? Just log in!

Are we really all in this together?

Friends What does a CLL patient and advocate have in common with a diabetes or HIV or RA or psoriasis advocate? Turns out the answer is plenty. I am just back...

Friends What does a CLL patient and advocate have in common with a diabetes or H...

bkoffman

CLL CURE Hero•8 years ago

3 Replies

itp

hi am aaliyah i have itp since age of 14 doc wanted to remove my spleen but am scared, aint there other ways can treat it

hi am aaliyah i have itp since age of 14 doc wanted to remove my spleen but am s...

shay246

•8 years ago

4 Replies

PLEASE do NOT include your email address in posts/replies - use a Private Message to exchange contact details

Given that lately more members are including their email addresses in their submissions, I thought I'd explain why this community's admins will delete your...

Given that lately more members are including their email addresses in their subm...

AussieNeil

Administrator•8 years ago

10 Replies

My first appointment at MDAnderson and then the trip home.

Just returned from MDA and My Oh MY!!! what a wonderful place. Although I found it quite sad to see soooooo many people with cancer, the staff there CAN NOT...

Just returned from MDA and My Oh MY!!! what a wonderful place. Although I found...

Rookie

•8 years ago

18 Replies

Lymph node pain?

Hi everyone, I am on W&W and every now and then I feel pain in my groin area. My lymph nodes are swollen in my neck area and my groin. I get sharp pain...

Hi everyone, I am on W&W and every now and then I feel pain in my groin area. M...

BCTexas

•8 years ago

10 Replies

Body Cramps

Hi Everyone... Have any of you experienced cramping in parts of your body you didn't think would cramp? Case in point; I started a yoga class and as I twist,...

Hi Everyone... Have any of you experienced cramping in parts of your body you di...

ladyprescott

•8 years ago

46 Replies

Acquiring additional deletions and changing percentages

I am wondering about how CLL can change. I know that over time you can acquire additional deletions to the one(s) your FISH test confirms but your Zap 70...

I am wondering about how CLL can change. I know that over time you can acquire ...

wwheather

•8 years ago

5 Replies

Just got word from the doctor in my FISH test result

Just got word from the doctor on my FISH test results and he said that he was happy to inform me that it showed 13q deletion which is what he was hoping for as...

Just got word from the doctor on my FISH test results and he said that he was ha...

My2kdsma

•8 years ago

11 Replies

I believe I can fly

Hi All Wanted to update you on the Training and Fundraising for the cycle ride I have a Guy helping me he is brilliant knows his stuff and sets me targets he...

Hi All Wanted to update you on the Training and Fundraising for the cycle ride I...

Hidden

•8 years ago

9 Replies

What you need to know about the 2016 flu vaccine

In Australia, about twice the number of people die from influenza each year than are diagnosed with CLL/SLL. I expect the statistics would be the same for...

In Australia, about twice the number of people die from influenza each year than...

AussieNeil

Administrator•8 years ago

2 Replies

Neutrophiles count

good morning. I am on Idealisib as I have 17del. I have check-ups every 6 weeks. So far so good. My neutrophils vary from 1.9 to 5.0. I asked my consultant...

good morning. I am on Idealisib as I have 17del. I have check-ups every 6 week...

eggemma

•8 years ago

5 Replies

Ibuprofen – just because it’s freely available, doesn’t make it safe

AussieNeil

Administrator•8 years ago

11 Replies

CLL Patient Survey

If you have CLL and have been treated with either ibrutinib (Imbruvica) or venetoclax (ABT-199) you can help by completing our survey. Lymphoma Canada is...

If you have CLL and have been treated with either ibrutinib (Imbruvica) or venet...

LCAdmin

•8 years ago

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First appointment

I have my first appointment with the heamotology oncologist tomorrow. I don't want to be alarmist, but I do want to take proper care of myself. I have seen...

I have my first appointment with the heamotology oncologist tomorrow. I don't wa...

Clsmith

•8 years ago

24 Replies

Fatigue in CLL

Hi all I am a constant reader of all posts though I have been on W&W now for several years with no great change in my stats. My haematologist has srarted 6 MTH...

Hi all I am a constant reader of all posts though I have been on W&W now for sev...

brad8

•8 years ago

2 Replies

EWG 2016 Dirty Dozens

If you live in US, you better take it look at this list before you shop for fruits & vegetables. www.ewg.org/foodnews/list.php

If you live in US, you better take it look at this list before you shop for frui...

shazie

•8 years ago

12 Replies

Did I finish all 26.2 miles?

You bet! I ran with my friend Ann and wore my purple shirt provided by St. Louis' Gateway chapter of the Leukemia and Lymphoma Society. Diagnosed for 4 1/2...

You bet! I ran with my friend Ann and wore my purple shirt provided by St. Loui...

notgivingup_2

•8 years ago

6 Replies

NEW - local support group for those in Cardiff and the South Wales area affected by a chronic blood cancer like CLL

If you are close to Cardiff this is a great opportunity to join us and meet up with others living with CLL and similar conditions, make new friends and help us...

If you are close to Cardiff this is a great opportunity to join us and meet up w...

HAIRBEAR_UK

Founder Admin•8 years ago

5 Replies

Patient Advocacy 101 Free Course for CLL Patients

Patient Empowerment Network is a non-profit patient advocacy organization dedicated to educate and empower patients across the US and beyond so they can be...

Patient Empowerment Network is a non-profit patient advocacy organization dedica...

joannicole

•8 years ago

2 Replies

Patient survey, support groups and living well with CLL

Friends, It’s been a very busy year and this week I spent a few days away from my patients and my online and live support group efforts just walking, reading,...

Friends, It’s been a very busy year and this week I spent a few days away from m...

bkoffman

CLL CURE Hero•8 years ago

Be the first to reply

HU have introduced a new page for writing posts

Joel from HU advises "The former page seemed as though it wasn't utilising the space very well. We also had some complaints about a few things that could be...

Joel from HU advises "The former page seemed as though it wasn't utilising the s...

AussieNeil

Administrator•8 years ago

Be the first to reply

IVIG in the UK?

Hi folks I've had a chest infection for the last four weeks and I'm now on my fifth lot of anti biotics this year. I spent 7 days in bed recently and I was...

Hi folks I've had a chest infection for the last four weeks and I'm now on my f...

Jamie_james

•8 years ago

13 Replies

Trying everything Natural to stay healthy in my Wait and Watch journey.

I have been to every site on treating Cll naturally. I work full time and my part time job is spending time researching everything to stay healthy during Wait...

I have been to every site on treating Cll naturally. I work full time and my par...

helenolton

•8 years ago

26 Replies

10 year survival with CLL, treated or not, comes with significant risk for other cancers

http://newsmail.wyanokegroup.com/trk/clickp?ref=zs171oic4_1-e4dex318364x01777&ecp=B45B94CF-36EA-E511-ABD7-A4BADB296AA8 We've heard this for years. These...

http://newsmail.wyanokegroup.com/trk/clickp?ref=zs171oic4_1-e4dex318364x01777&ec...

lapermone

•8 years ago

23 Replies

From triage to discharge: a user’s guide to navigating hospitals

If we aren't already familiar with how hospitals work for unplanned stays, a CLL diagnosis certainly increases our chances of finding out! Rather than...

If we aren't already familiar with how hospitals work for unplanned stays, a CLL...

AussieNeil

Administrator•8 years ago

Be the first to reply

How Checkpoint Inhibitors work - some useful analogies

Recently there has been interest in a new way of tackling cancers, including CLL, namely Checkpoint Inhibitors:...

Recently there has been interest in a new way of tackling cancers, including CLL...

AussieNeil

Administrator•8 years ago

Be the first to reply

Body temperature very unstable with fever and chest infection

Hi all. I'm a little concerned right now as I picked up a virus/infection last Thursday morning, which has developed rather unexpectedly and quite aggressively...

Hi all. I'm a little concerned right now as I picked up a virus/infection last T...

deveritt

•8 years ago

13 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2016

Kinesics- Proxemics - the Existential Phenomenologist

CLL and Hives

New to the group

Are we really all in this together?

itp

PLEASE do NOT include your email address in posts/replies - use a Private Message to exchange contact details

My first appointment at MDAnderson and then the trip home.

Lymph node pain?

Body Cramps

Acquiring additional deletions and changing percentages

Just got word from the doctor in my FISH test result

I believe I can fly

What you need to know about the 2016 flu vaccine

Neutrophiles count

Ibuprofen – just because it’s freely available, doesn’t make it safe

CLL Patient Survey

First appointment

Fatigue in CLL

EWG 2016 Dirty Dozens

Did I finish all 26.2 miles?

NEW - local support group for those in Cardiff and the South Wales area affected by a chronic blood cancer like CLL

Patient Advocacy 101 Free Course for CLL Patients

Patient survey, support groups and living well with CLL

HU have introduced a new page for writing posts

IVIG in the UK?

Trying everything Natural to stay healthy in my Wait and Watch journey.

10 year survival with CLL, treated or not, comes with significant risk for other cancers

From triage to discharge: a user’s guide to navigating hospitals

How Checkpoint Inhibitors work - some useful analogies

Body temperature very unstable with fever and chest infection

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