Posts - CLL Support | HealthUnlocked

CLL Support

22,514 members • 38,671 posts

All posts for July 2016

Dr. Furman on Genomic testing and MRD Negativity- And I am off to Africa

I am going on radio silence after this email so please don’t be upset or worried if I don’t respond to questions or comments. Betsy Dennison, an oncology RN...

I am going on radio silence after this email so please don’t be upset or worried...

bkoffman

CLL CURE Hero•8 years ago

7 Replies

Facebook Live

Hi all, thank you so much for taking our recent clinical trial survey. Andrew will share the results of that survey during a Facebook Live discussion from...

Hi all, thank you so much for taking our recent clinical trial survey. Andrew wi...

tclementi

•8 years ago

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Mammogram follow-up - false alarm due to CLL nodes?

I had a mammogram about three weeks ago and they have seen something untoward on it and I have been called back to the hospital for an appointment. Could this...

I had a mammogram about three weeks ago and they have seen something untoward on...

janloveslife

•8 years ago

17 Replies

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US cancer centres tripled advertising expenditure in 10 years. How do you choose which centre to attend?

A research team found that total consumer advertising spending by 890 US cancer centres increased from $54,229,849 to $173,510,900 over the 10 years to 2014....

A research team found that total consumer advertising spending by 890 US cancer...

AussieNeil

Administrator•8 years ago

9 Replies

Live vaccinations?

First of all thank you to all of you at HU. I was only diagnosed 12 weeks ago, am on W and W and 6 monthly blood tests. I had never even heard of CLL so this...

First of all thank you to all of you at HU. I was only diagnosed 12 weeks ago, ...

Saska-Jul31

•8 years ago

7 Replies

GPs unlikely to pick up certain cancers right away because it’s not the most likely diagnosis

Many of us have discovered that we've had CLL some time before our eventual diagnosis, in some cases many, many years beforehand. The delay in diagnosis may...

Many of us have discovered that we've had CLL some time before our eventual diag...

AussieNeil

Administrator•8 years ago

17 Replies

Lymph node development

I have been diagnosed 5 years ago and now it appears the cll is active. My lymphocyte has tripled in last six monthes. I have no visible lymph nodes but...

I have been diagnosed 5 years ago and now it appears the cll is active. My lym...

Hidden

•8 years ago

4 Replies

The continuing success of the CLL Support group at HealthUnlocked and HU director cycling to raise funds for CLLSA

Dear friends On Thursday I visited Healthunlocked in London for an admin workshop to explore with the HU management team their current workflow, commitment and...

Dear friends On Thursday I visited Healthunlocked in London for an admin worksho...

HAIRBEAR_UK

Founder Admin•8 years ago

9 Replies

Dr. Follows on the symposium where I spoke in Copenhagen at EHA

If you recall, a month ago I was in Copenhagen for the European Hematology Association meeting and I had the privilege to be asked to speak with a very...

If you recall, a month ago I was in Copenhagen for the European Hematology Assoc...

bkoffman

CLL CURE Hero•8 years ago

1 Reply

Cll and ITP

Has anyone through having CLL contracted the blood disorder itp, this is an autoimmune disorder which attacks the platelets, my mum has this...All drugs...

Has anyone through having CLL contracted the blood disorder itp, this is an auto...

Laurag78

•8 years ago

3 Replies

Egzema and pruritus

After two weeks last cycle Chlorambucil,begin egzema with pruritus generalisata (no only face and digiti manus inf.and sup.)I see dermatologist and he give...

After two weeks last cycle Chlorambucil,begin egzema with pruritus generalisata ...

Name-1

•8 years ago

6 Replies

Repurposing everyday drugs to fight cancer

'Pan Pantziarka is a London-based computer scientist for the Anticancer Fund in Belgium, and joint coordinator of the Repurposing Drugs in Oncology (ReDo)...

'Pan Pantziarka is a London-based computer scientist for the Anticancer Fund in ...

AussieNeil

Administrator•8 years ago

3 Replies

Here's hoping

I have an appointment next Tuesday 10.00 at the Churchill hospital , could be a good omen , that's my dads birthday , he passed away 3 years ago ,bit mawkish I...

I have an appointment next Tuesday 10.00 at the Churchill hospital , could be a ...

Nigel-Q

•8 years ago

24 Replies

MY SENSE OF HUMOUR TOOK TO ITS HEELS AND RAN AS FAST AS IT COULD!!!!

Well last Friday was th first round of FCR. I felt quite positive, put on make up and a nice Lacey top to go to the party . All the staff were amazing, loads...

Well last Friday was th first round of FCR. I felt quite positive, put on make u...

Bethan49

•8 years ago

12 Replies

Ibrutinib information sheet

I just found an information sheet about this drug from a UK NHS Trust (hospital group? not sure what to call them these days!), which has some useful...

I just found an information sheet about this drug from a UK NHS Trust (hospital ...

deveritt

•8 years ago

4 Replies

SPLEEN?

Dear people of this great community, I'm on "watch n wait" and I don't post often but definitely always on here reading all posts with much interest. So, my...

Dear people of this great community, I'm on "watch n wait" and I don't post ofte...

Que-sera-sera

•8 years ago

17 Replies

Relative vs Absolute Risk of developing cancer

We often hear of the increased risk of developing cancer due to various activities, smoking, drinking, sun and other radiation exposure and so on. Everyone...

We often hear of the increased risk of developing cancer due to various activiti...

AussieNeil

Administrator•8 years ago

6 Replies

Cycle 2, Day 1 – AKA Trip 4 to Columbus

The latest installment of my OSU Obin/Ibrutinib/Venetoclax trial adventures... Last week was just a test week, so there was nothing new to report. However,...

The latest installment of my OSU Obin/Ibrutinib/Venetoclax trial adventures... ...

thompsonellen

•8 years ago

14 Replies

Blotches and Red Blood spots

Hi I'm on the Flair Trial I had my first of 6 treatments of Rituximab along with Ibrutinib and have been well apart from having Blood spots and getting a red...

Hi I'm on the Flair Trial I had my first of 6 treatments of Rituximab along with...

Chuddie48

•8 years ago

2 Replies

End of FLAIR. No more Ibrutinib. Great improvement!

I have been on FLAIR trail since November 2015, finished Rituximab end of March. Suffered side effect from Ibrutinib of severe muscle and joint pains....

I have been on FLAIR trail since November 2015, finished Rituximab end of M...

romarin

•8 years ago

10 Replies

Share Your Thoughts on Clinical Trials- Take Our Survey

Patient Power’s Andrew Schorr will be speaking again before another major audience – this time in Boston on July 21st to heads of research at pharmaceutical...

Patient Power’s Andrew Schorr will be speaking again before another major audien...

tclementi

•8 years ago

8 Replies

Headaches ??

I haven't written much. Based on good advice received here, in April I met with a blood cancer specialist who reviewed my diagnosis of CLL and treatment thus...

I haven't written much. Based on good advice received here, in April I met with...

Soosie16-USA

•8 years ago

12 Replies

rchop

how worse is rchop in ritchers

lucky98

•8 years ago

1 Reply

Encouraging The Conversation

Interview with Nicole Lamanna, MD, Associate Clinical Professor of Medicine Columbia University Medical Center Esther Schorr, care partner and patient...

Interview with Nicole Lamanna, MD, Associate Clinical Professor of Medicine Colu...

krayburn

•8 years ago

11 Replies

PEOPLE HERE IN ADELAIDE ARE NOT GETTING THERE IBRUTINIB ON TRIAL AT THE MOMENT.

HIGH TOO EVEYONE OUT THERE CAN ANYBODY THAT LIVES IN AMERICA TELL ME WHATS HAPPENING WITH THE DRUG IBRUTINIB IM ON A TRIAL I LIVE IN ADELAIDE STH AUST FOR THE...

HIGH TOO EVEYONE OUT THERE CAN ANYBODY THAT LIVES IN AMERICA TELL ME WHATS HAPPE...

piere1

•8 years ago

4 Replies

Problem

After four months of Chlorambucil th with Allopurinol,my Alc is 6.8,Monocyt 29(1.5-11.5),PLT 117.But my lymph nodes have not decreased in size at all.In...

After four months of Chlorambucil th with Allopurinol,my Alc is 6.8,Monocyt 29(1...

Name-1

•8 years ago

7 Replies

worrying times

Can I ask how long people have lived with CLL for....my mum got diagnosed 8 years ago and the illness only started taking effect 2 years ago but since then it...

Can I ask how long people have lived with CLL for....my mum got diagnosed 8 year...

Laurag78

•8 years ago

9 Replies

CLL Tribune

Last week we published the 4th edition of The CLL Tribune. We’re so grateful to the patients and physicians and others who share their experience and expertise...

Last week we published the 4th edition of The CLL Tribune. We’re so grateful to ...

bkoffman

CLL CURE Hero•8 years ago

1 Reply

Made it

Hi Fans and fellow supporters from around the world I arrived safety at John Groats 7pm saturday evening Yeah - I will post the last few days updates shortly...

Hi Fans and fellow supporters from around the world I arrived safety at John Gro...

TheFlyer

•8 years ago

12 Replies

Where is The Flyer?

I am missing my updates.....have you made it?! Do you smell the sea? Has the celebratory whisky diminished your ability to type? A heroic effort and I hope...

I am missing my updates.....have you made it?! Do you smell the sea? Has the ...

Quarry

•8 years ago

7 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2016

Dr. Furman on Genomic testing and MRD Negativity- And I am off to Africa

Facebook Live

Mammogram follow-up - false alarm due to CLL nodes?

US cancer centres tripled advertising expenditure in 10 years. How do you choose which centre to attend?

Live vaccinations?

GPs unlikely to pick up certain cancers right away because it’s not the most likely diagnosis

Lymph node development

The continuing success of the CLL Support group at HealthUnlocked and HU director cycling to raise funds for CLLSA

Dr. Follows on the symposium where I spoke in Copenhagen at EHA

Cll and ITP

Egzema and pruritus

Repurposing everyday drugs to fight cancer

Here's hoping

MY SENSE OF HUMOUR TOOK TO ITS HEELS AND RAN AS FAST AS IT COULD!!!!

Ibrutinib information sheet

SPLEEN?

Relative vs Absolute Risk of developing cancer

Cycle 2, Day 1 – AKA Trip 4 to Columbus

Blotches and Red Blood spots

End of FLAIR. No more Ibrutinib. Great improvement!

Share Your Thoughts on Clinical Trials- Take Our Survey

Headaches ??

rchop

Encouraging The Conversation

PEOPLE HERE IN ADELAIDE ARE NOT GETTING THERE IBRUTINIB ON TRIAL AT THE MOMENT.

Problem

worrying times

CLL Tribune

Made it

Where is The Flyer?

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