Posts - CLL Support | HealthUnlocked

CLL Support

22,987 members • 39,473 posts

All posts for September 2015

Keeping CLL a Secret

A man I met at the Canadian Advocacy Group meeting in Niagara Falls is now a blog contributor on PatientPower.info using a pseudonym. Read and learn why he...

A man I met at the Canadian Advocacy Group meeting in Niagara Falls is now a blo...

andrewschorr

•9 years ago

2 Replies

Tracking your blood test results and much more

Way back in 2002, Chaya Venkat of CLLTopics/Updates fame, kindly provided an Excel workbook template to enable patients to track changes in their blood test...

Way back in 2002, Chaya Venkat of CLLTopics/Updates fame, kindly provided an Exc...

AussieNeil

Administrator•9 years ago

19 Replies

Are you biologically young enough for FCR?

Wondering if you are biologically young and fit enough to tolerate say FCR (Fludarabine, Cyclophosphamide Rituximab), or whether a gentler treatment protocol...

Wondering if you are biologically young and fit enough to tolerate say FCR (Flud...

AussieNeil

Administrator•9 years ago

8 Replies

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confused

HI EVERYONE SINCE THE START OF THIS YEAR MY WBC HAS BEEN GOING DOWN AT ONE STAGE IT WAS 126 AND TODAY WAS 79. WAS DIAGOSED WITH CLL 5 YEARS AGO AND HAVE BEEN...

HI EVERYONE SINCE THE START OF THIS YEAR MY WBC HAS BEEN GOING DOWN AT ONE STAGE...

happymac

•9 years ago

5 Replies

IWCLL 2015

Not sure if these links have been posted for the IW CLL conference going on now, some very interesting interviews....

Not sure if these links have been posted for the IW CLL conference going on now,...

SBMACLL

•9 years ago

2 Replies

Tracking your body temperature through your smartphone using an infrared ear drum thermometer earpiece

Yet another example of how we can extend the use of smartphones that we probably already own, to help us document our health for sharing with our...

Yet another example of how we can extend the use of smartphones that we probably...

AussieNeil

Administrator•9 years ago

1 Reply

When should you take antibiotics?

Matthew Cooper, Prof. Institute for Molecular Bioscience at The University of Queensland, introduces his article with some rather alarming Antibiotic myths and...

Matthew Cooper, Prof. Institute for Molecular Bioscience at The University of Qu...

AussieNeil

Administrator•9 years ago

2 Replies

New cancer drugs are very expensive - here’s how we work out value for our money

This very timely and well written article explains how Australia determines whether new drugs are worth the extremely high prices wanted by pharmaceutical...

This very timely and well written article explains how Australia determines whet...

AussieNeil

Administrator•9 years ago

3 Replies

England cancer drug funding cancellation - Use your democratic freedom to protest. Derogatory posts/replies/content [u]will[/u] be deleted.

The whole CLL patient world is the poorer because of the recent reversal of funding arrangements for new (and not so new CLL drugs i.e. Bendamustine) in...

The whole CLL patient world is the poorer because of the recent reversal of fund...

AussieNeil

Administrator•9 years ago

14 Replies

Drugs cuts what are we going to do about it

Any suggestions anyone ? 20.000 migrants coming in to the UK and the current parliament denying Cancer patients treatments Patients who pay there taxes...

Any suggestions anyone ? 20.000 migrants coming in to the UK and the current pa...

Hidden

•9 years ago

2 Replies

Sad news

When i first had chemo the nurse who was treating me sat me next to a fella called Freddie. A very thoughtfull gentleman who talked me through my horrible...

When i first had chemo the nurse who was treating me sat me next to a fella call...

grizzlebear

•9 years ago

6 Replies

Ibrutinib denied to new patients

Learned today that the cancer drugs fund has removed Ibrutinib from its approved drugs list. Feels gutted for anyone who needs this drug as they will not be...

Learned today that the cancer drugs fund has removed Ibrutinib from its approved...

Pennycam

•9 years ago

12 Replies

Another years results

Just come back from Bolton Royal, WBC is 52 (*10^9/L) still on slow burn, (48 last year) :-). hematologist spotted higher than desired cholesterol so off to Gp...

Just come back from Bolton Royal, WBC is 52 (*10^9/L) still on slow burn, (48 la...

Rebrin-UK

•9 years ago

4 Replies

FISH

Hi , result of FISH : deletion of TP53 in13% , what it means???

ava1967ir

•9 years ago

4 Replies

Kiovig infusion today

Have had my infusion today at Raigmore in Inverness. The sun was shining, the windows were open, the nurses were their usual brilliant selves. The job that...

Have had my infusion today at Raigmore in Inverness. The sun was shining, the wi...

Austin55

•9 years ago

4 Replies

Live from IwCLL 2015, Sydney, Australia: The latest news in chronic lymphocytic leukemia

Friends, There is nothing like being at these meetings live and talking with the doctors and researchers. I feel so lucky and will have ton of great stuff to...

Friends, There is nothing like being at these meetings live and talking with t...

bkoffman

CLL CURE Hero•9 years ago

4 Replies

Petition to safeguard the England Cancer Drugs Fund (UK)

Hullo All, My Haemotologist recently set up a petition to ask the government to reverse the recent changes it has made to the Cancer Drugs Fund that will...

Hullo All, My Haemotologist recently set up a petition to ask the government to...

mikedicks

•9 years ago

9 Replies

Cancer Drugs funding cuts in England. Can you please sit my online petition to David Cameron.

Dear Friends, I just created the petition "Stop Cancer Drug Fund Cuts in England" and wanted to ask if you could add your name too. This campaign means a lot...

Dear Friends, I just created the petition "Stop Cancer Drug Fund Cuts in Englan...

HappyDave

•9 years ago

20 Replies

snakes venom & cll - multiple mayloma

Who would think snakes venom Contortrostatin proten could and is fighting cancer and leukemea http://spanish.peopledaily.com.cn/n/2015/0204/c92121-8845993.html

Who would think snakes venom Contortrostatin proten could and is fighting cancer...

Hidden

•9 years ago

3 Replies

diagnosis

hi I noticed on a hospital letter my diagnosis is Chronic Lymphocytic Leukaemia (Chr. 11q-) is this good or bad having bit of a hard time at the mo had a...

hi I noticed on a hospital letter my diagnosis is Chronic Lymphocytic Leukaem...

mush56

•9 years ago

9 Replies

What is Open Source Pharma (and why should you care)?

"Today, pharmaceutical development is the very epitome of a proprietary business. Research results are closely guarded, developments are immediately...

"Today, pharmaceutical development is the very epitome of a proprietary business...

AussieNeil

Administrator•9 years ago

Be the first to reply

Water, water everywhere.

We are told to keep drinking water. Especially tap water. For myself the tap water in London tastes and smells horrible. So I used to spend (waste) money on...

We are told to keep drinking water. Especially tap water. For myself the tap wat...

jangreen

•9 years ago

12 Replies

Who to Follow?

You may have noticed a new feature has just appeared on the right hand side of the Newsfeed page. Joel from HU explains: "If you head over to your newsfeed...

You may have noticed a new feature has just appeared on the right hand side of t...

AussieNeil

Administrator•9 years ago

19 Replies

FDA Approves New Drug For Chemo-Related Nausea and Vomiting

Those of us that find the anti-nausea drugs provided with their treatment aren't working effectively can take heart that a new drug rolapitant, has just been...

Those of us that find the anti-nausea drugs provided with their treatment aren't...

AussieNeil

Administrator•9 years ago

3 Replies

Might be a good idea to eat more fruit and vegetables. Your bread could soon lose a crucial vitamin needed for red blood cells - Folic acid

"Flour millers must by law add folic acid (a synthetic form of the vitamin folate) to most bread products sold in Australia, but a looming global shortfall...

"Flour millers must by law add folic acid (a synthetic form of the vitamin folat...

AussieNeil

Administrator•9 years ago

Be the first to reply

Jumping for Joy

Hi Everyone, I just wanted to let you know the latest (at last) good news my husband has received today. We went to see Dr Bloor at The Christie this morning...

Hi Everyone, I just wanted to let you know the latest (at last) good news my hu...

june65

•9 years ago

25 Replies

Thanks...again!

Thanks for all if the great help. The combination of wisdom, empathy and kindness had helped me through the last few days. Still reeling but managed to focus...

Thanks for all if the great help. The combination of wisdom, empathy and kindnes...

Mecarr

•9 years ago

5 Replies

Explainer: why are off-label medicines prescribed?

I expect many of us have heard of the term 'Off-label', but aren't quite sure what it means. Medical drugs are approved for a specific use by government...

I expect many of us have heard of the term 'Off-label', but aren't quite sure wh...

AussieNeil

Administrator•9 years ago

2 Replies

Latest update on CAR-T (CTL019) personalized cellular therapy for CLL

A new study details the completed, 14-patient pilot CTL019 trial, which began in mid 2010. Four CLL patients (29 percent) in the study achieved a complete...

A new study details the completed, 14-patient pilot CTL019 trial, which began in...

AussieNeil

Administrator•9 years ago

7 Replies

How new technologies are shaking up health care

Tim Usherwood, Professor of General Practice at University of Sydney gives a quick overview of how the Internet is changing the traditional process by which...

Tim Usherwood, Professor of General Practice at University of Sydney gives a qui...

AussieNeil

Administrator•9 years ago

Be the first to reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2015

Keeping CLL a Secret

Tracking your blood test results and much more

Are you biologically young enough for FCR?

confused

IWCLL 2015

Tracking your body temperature through your smartphone using an infrared ear drum thermometer earpiece

When should you take antibiotics?

New cancer drugs are very expensive - here’s how we work out value for our money

England cancer drug funding cancellation - Use your democratic freedom to protest. Derogatory posts/replies/content [u]will[/u] be deleted.

Drugs cuts what are we going to do about it

Sad news

Ibrutinib denied to new patients

Another years results

FISH

Kiovig infusion today

Live from IwCLL 2015, Sydney, Australia: The latest news in chronic lymphocytic leukemia

Petition to safeguard the England Cancer Drugs Fund (UK)

Cancer Drugs funding cuts in England. Can you please sit my online petition to David Cameron.

snakes venom & cll - multiple mayloma

diagnosis

What is Open Source Pharma (and why should you care)?

Water, water everywhere.

Who to Follow?

FDA Approves New Drug For Chemo-Related Nausea and Vomiting

Might be a good idea to eat more fruit and vegetables. Your bread could soon lose a crucial vitamin needed for red blood cells - Folic acid

Jumping for Joy

Thanks...again!

Explainer: why are off-label medicines prescribed?

Latest update on CAR-T (CTL019) personalized cellular therapy for CLL

How new technologies are shaking up health care

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