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CLL Support

22,663 members • 38,898 posts

All posts for August 2017

CLL and the NHS in the UK

I'm hoping the UK members of the CLL family can share their experiences with me, and I apologize in advance if my two questions sound elementary. I'm an UK...

I'm hoping the UK members of the CLL family can share their experiences with me,...

Hidden

•7 years ago

29 Replies

Ibrutinib severe bone pain

My father got cll from last year. We have tried FRC regimen which was not effective. His disease is associated with p53 mutation. Now it becane refractory cll....

My father got cll from last year. We have tried FRC regimen which was not effect...

Aliyeh

•7 years ago

9 Replies

Had blood work done recently, a few numbers are concerning to me. Any help is greatly appreciated

I had blood work done and a few numbers have me concerned. My LYMPHOCYTES number is low, 0.76 out of 1-3. My percentage though is 22% out of 15-41. Also my...

I had blood work done and a few numbers have me concerned. My LYMPHOCYTES number...

jasonkp1978

•7 years ago

10 Replies

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Bone Marrow Biopsy

I'm very nervous at the thought of having a BMB in 2 weeks time, I'm told it can be very painful . Anyone got any advice on what I could take, e.g. Painkillers...

I'm very nervous at the thought of having a BMB in 2 weeks time, I'm told it can...

Abc123qaz

•7 years ago

31 Replies

Context change

Does anyone know how to change from CLL community to Waldenstroms? I was placed in CLL because it was the category I was looking at when I decided to join. I...

Does anyone know how to change from CLL community to Waldenstroms? I was placed...

Bbonal

•7 years ago

1 Reply

Cancer Survival Takes a Hit with Alternative Medicine -Study shows eschewing conventional therapy is risky

The 840 patients assessed had a median follow-up of 66 months. The alternative-medicine cohort had a significantly worse 5-year survival rate (54.7% versus...

The 840 patients assessed had a median follow-up of 66 months. The alternative-m...

AussieNeil

Administrator•7 years ago

8 Replies

Proofreading

I was just rereading my original post and am embarrassed to note that I misspelled HEP B. I apologize. Kathy

I was just rereading my original post and am embarrassed to note that I misspell...

Kjag

•7 years ago

5 Replies

Obinutuzumab anyone?

I am thinking about participating in a clinical trial which will compare ibrutinib+obinutuzumab+venetoclax to ibrutinib+obinutuzumab. I have heard of...

I am thinking about participating in a clinical trial which will compare ibrutin...

eoravillo

•7 years ago

6 Replies

CLL and Psoriatic Arthritis

I am currently on W&W. but also have mild psoriasis with Psoriatic arthritis getting worse. I was taking Humira for years which could be partly why I got the...

I am currently on W&W. but also have mild psoriasis with Psoriatic arthritis get...

garrick66

•7 years ago

3 Replies

Summer Delivery of Ibrutinib

No need for Ice anymore. The "GLACIER ICE' packs that Diplomat Pharmacy uses for summer time shipments of ibrutinib are perfect for cooling my fresh-picked,...

No need for Ice anymore. The "GLACIER ICE' packs that Diplomat Pharmacy uses for...

gardening-girl

•7 years ago

12 Replies

Ibrutinib/ Venetoclax Trial

Have now completed 10 months of the Ibrutinib Venetoclax trial and my white count is now 4.3.On the whole have been ok apart from an onward going problem with...

Have now completed 10 months of the Ibrutinib Venetoclax trial and my white cou...

SueKRM

•7 years ago

5 Replies

Latest update

Hi Everyone Well no more blood transfusions as HB has risen to 100, Platelets have risen to 76, so all looking good. We discussed further treatment and they...

Hi Everyone Well no more blood transfusions as HB has risen to 100, Platelets ha...

Susiecarer

•7 years ago

6 Replies

Falling sensation

My dad is in the week two with Venetoclax and he feels a falling sensation in the chest which appears now and then without any clear pattern. I wonder if...

My dad is in the week two with Venetoclax and he feels a falling sensation in th...

artkula

•7 years ago

3 Replies

Shingles vaccine

Hi, my wife has recently been diagnosed with CLL fortunately at 0 stage at present. I have reached a landmark age (70) triggering an invite for a Shingles...

Hi, my wife has recently been diagnosed with CLL fortunately at 0 stage at prese...

peterOJ

•7 years ago

23 Replies

CLL Rash

Hi, I'm 62 and been on Ibrutinib for 3 years. Treatment is going well and blood results are normal for the first time since 2011. Previously treated in a...

Hi, I'm 62 and been on Ibrutinib for 3 years. Treatment is going well and blood ...

Fastbike14

•7 years ago

8 Replies

Fiebre (Fever with Ibrutinib - dose reduction)

Hello everyone! I am in my 5 week of ibrutinib and my side effects began to appear. Fever not very high but constant. Does it happen to others? I reduced...

Hello everyone! I am in my 5 week of ibrutinib and my side effects began to appe...

Bixilon

•7 years ago

3 Replies

When CLL Goes Awry

Hi, All -- I've written before, at first when I lost eyesight in May and again in June after seizures began, both of which stemmed from my relapsing CLL. It...

Hi, All -- I've written before, at first when I lost eyesight in May and again i...

Eagle5327

•7 years ago

17 Replies

Health Check: in terms of exercise, is walking enough?

'Walking leads to a remarkable reduction in the risk of heart disease, type 2 diabetes, some cancers, arthritis, depression, anxiety and insomnia, and...

'Walking leads to a remarkable reduction in the risk of heart disease, type 2 di...

AussieNeil

Administrator•7 years ago

8 Replies

FISH test result changed post chemo

My first post! My husband was diagnosed with CLL in 2004. He had 6 rounds of FC and achieved a good remission. In 2010 he relapsed and had FRC again 6 rounds,...

My first post! My husband was diagnosed with CLL in 2004. He had 6 rounds of FC ...

lemsford

•7 years ago

4 Replies

Bone Marrow Biopsy

Hi. This is my first post. After 7 years w&w my platelets have dropped to 46, being 61 five weeks ago. Seeing Dr Claire Dearden for the first time at the Royal...

Hi. This is my first post. After 7 years w&w my platelets have dropped to 46, be...

Lola2000

•7 years ago

10 Replies

Ibrutinib as frontline??

Hello everyone! Does anyone know why Ibrutinib is only available to CLL patients whose previous treatments have been unsuccessful? It was first made routinely...

Hello everyone! Does anyone know why Ibrutinib is only available to CLL patients...

bendintheroad1

•7 years ago

31 Replies

PLUREAL EFFUSION ON PET SCAN/ CLL/SLL/IMBRUVICA

Dr. was checking the nodes, and spotted fluid on right lung. He didn't mention the nodes. Scheduled out patient procedure to check for lung cancer per this...

Dr. was checking the nodes, and spotted fluid on right lung. He didn't mention ...

deb1610

•7 years ago

1 Reply

Stress and Imbruvica

Diagnosed almost 3 years ago and now 14 months on Imbruvica.... I find that I'm not dealing well with stress. Up until recently as we have been dealing with...

Diagnosed almost 3 years ago and now 14 months on Imbruvica.... I find that I'm ...

RJR1

•7 years ago

5 Replies

Still not sure

My absolute lymphocytes have been averaging about 5.5 since 2012. My absolute neutrophils have been slightly elevated as well. Wbc anywhere from 12.0 to 15.1....

My absolute lymphocytes have been averaging about 5.5 since 2012. My absolute ne...

cindyrella50

•7 years ago

21 Replies

Splitting nails

I'm new here. Will be starting ibrutinib soon with prednisone . Right now taking prednisone because my hemoglobin is 7.5 and they can't find blood to be...

I'm new here. Will be starting ibrutinib soon with prednisone . Right now taki...

Corkyrissa

•7 years ago

11 Replies

CLL...The book.

I'm looking for a volunteer or two to read something I've written. It all started out as a vague concept to keep a diary of my coming chemo experiences,...

I'm looking for a volunteer or two to read something I've written. It all start...

Hidden

•7 years ago

Be the first to reply

FCR after four years

When I was taken to the hospital with HB of 5.4 and Leukos 20.0 and lots of wrong b Cells, this was 9/2013, I had only little hope to recover again, as I was...

When I was taken to the hospital with HB of 5.4 and Leukos 20.0 and lots of wron...

seoul

•7 years ago

1 Reply

To have or not to have....

Hi all I've got my appointment this morning to see if I need my 5th FCR. I must admit to feeling nervous and anxious because why shouldn't I have my 5th and...

Hi all I've got my appointment this morning to see if I need my 5th FCR. I must...

sallyplest

•7 years ago

28 Replies

Can P53 occur or has it always been in your body?

Are you born with P53 or does it just occur? I presume once it has happened it can't be cured and is just managed? Is it hereditary? If it does occur,...

Are you born with P53 or does it just occur? I presume once it has happened it ...

Ros123

•7 years ago

10 Replies

Bone marrow still not producing red cells

Hello again, After four rounds of anti-body therapy nearly everything is coming into normal range but my bone marrow still is not producing erythrocytes. I...

Hello again, After four rounds of anti-body therapy nearly everything is coming ...

Hidden

•7 years ago

9 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2017

CLL and the NHS in the UK

Ibrutinib severe bone pain

Had blood work done recently, a few numbers are concerning to me. Any help is greatly appreciated

Bone Marrow Biopsy

Context change

Cancer Survival Takes a Hit with Alternative Medicine -Study shows eschewing conventional therapy is risky

Proofreading

Obinutuzumab anyone?

CLL and Psoriatic Arthritis

Summer Delivery of Ibrutinib

Ibrutinib/ Venetoclax Trial

Latest update

Falling sensation

Shingles vaccine

CLL Rash

Fiebre (Fever with Ibrutinib - dose reduction)

When CLL Goes Awry

Health Check: in terms of exercise, is walking enough?

FISH test result changed post chemo

Bone Marrow Biopsy

Ibrutinib as frontline??

PLUREAL EFFUSION ON PET SCAN/ CLL/SLL/IMBRUVICA

Stress and Imbruvica

Still not sure

Splitting nails

CLL...The book.

FCR after four years

To have or not to have....

Can P53 occur or has it always been in your body?

Bone marrow still not producing red cells

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