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CLL Support

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All posts for February 2017

Joint Pain

Anyone else having finger joints crack with pain and on ACP 196?

Buckeye64

•8 years ago

12 Replies

treatment when liver counts are off?

Hi, I have been deciding about when to do treatment but now I have had a sudden jump in ALT and AST indicating liver issues. I have lots of B cll symptoms but...

Hi, I have been deciding about when to do treatment but now I have had a sudden ...

Jill4

•8 years ago

10 Replies

Ibrutinib / Venetoclax

Hi my fellow CLLr's I need some feed back. I just had my 3 month visit to see my Oncologist at M.D. ANDERSON and I'm very confused on what I should do. Even...

Hi my fellow CLLr's I need some feed back. I just had my 3 month visit to see ...

BCTexas

•8 years ago

83 Replies

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How fake drugs end up in our public health system (and how to spot them)

There have been plenty of previous posts about the poor regulation of supplements and herbal remedies, such as this one about the New York attorney general's...

There have been plenty of previous posts about the poor regulation of supplement...

AussieNeil

Administrator•8 years ago

3 Replies

Restarted Ibnutrib

After high grade fever last week, ie after taking 2x140 MG tab for abt one month, was hospitized and Doc diagnosed fever is account bronchitis. So they gave me...

After high grade fever last week, ie after taking 2x140 MG tab for abt one month...

Anilbhard

•8 years ago

27 Replies

High Uric Acid level

Have any of you on Imbruvica experienced a high Uric Acid value? iI drink 1 gallon of water a day plus fluids with all meals, etc. but I am on lasix and HCTZ...

Have any of you on Imbruvica experienced a high Uric Acid value? iI drink 1 gall...

PThomas

•8 years ago

14 Replies

Validation of a vitamin D replacement strategy in vitamin D-insufficient CLL patients...

Vitamin D insufficiency has been linked to poor prognosis in patients with malignancy, particularly lymphoid malignancies. Currently, from the Mayo study.....

Vitamin D insufficiency has been linked to poor prognosis in patients with malig...

Cllcanada

Shouting out to the CLL community in Ireland

Please register your interest ASAP as places are limited!

KateEvaLen

•8 years ago

15 Replies

Psilocybin Mushrooms and Anxiety over Cancer

You savvy ones have probably read all about the current research about Psilocybin Mushrooms eliminating anxiety over cancer. Take it from me, it's true :wink:

You savvy ones have probably read all about the current research about Psilocybi...

DirkTengg

•8 years ago

6 Replies

12th Anniversary at Untreated

Just started my 13th year as "untreated" and am healthier and feel better now than I did then. I hope this encourages at least a few of you :)

Just started my 13th year as "untreated" and am healthier and feel better now th...

DirkTengg

•8 years ago

31 Replies

Ibnutrib restarted

I started Ibnutrib 2x140 course on 21st Jan. On 7 th Feb my TLC was 271, and on 21 st got 104 deg F temp and was put on antibiotic and ((TLC reached 400 level,...

I started Ibnutrib 2x140 course on 21st Jan. On 7 th Feb my TLC was 271, and on ...

Anilbhard

•8 years ago

6 Replies

CLL and appendectomy

Hi, I have CLL and am currently on watch and wait. I had an appendectomy on Friday, the symptoms of which appeared along with a very enlarged, fluid-filled...

Hi, I have CLL and am currently on watch and wait. I had an appendectomy on Fri...

KHuff

•8 years ago

2 Replies

Where?

Please consider adding your country to your profile, or stating it in your posts. It is very helpful to others responding with their experiences because...

Please consider adding your country to your profile, or stating it in your posts...

Oleboyredw-uk

•8 years ago

6 Replies

Eye and facial problems - CLL or something else?

Sorry for the long post but I am running out of ideas. I am on W and W. I was diagnosed 9 years ago with CLL at the age of 37. Over the last year I have been...

Sorry for the long post but I am running out of ideas. I am on W and W. I was di...

danielC

•8 years ago

13 Replies

Oxford update

Hi All I was at Oxford on Thursday it was nice to catch up with Dr Anna Schuh My Bloods were ok but I am now early stage B still all that means is more...

Hi All I was at Oxford on Thursday it was nice to catch up with Dr Anna Schuh ...

TheFlyer

•8 years ago

12 Replies

Uninformed

I read quite a few of y'alls posts. And I have to say I had no idea there was that much I needed to know. I don't even know what most of the things that...

I read quite a few of y'alls posts. And I have to say I had no idea there was ...

Pixiemoon3

•8 years ago

6 Replies

Good news

Good morning fellow CLLer's. I got good news on my test results for my A1. Went done from 6.4 to 5.8. The Metformin (500mg) did a great job and in the past...

Good morning fellow CLLer's. I got good news on my test results for my A1. Went ...

Cham2355

•8 years ago

1 Reply

Drugs don’t cure everything – doctors can be helped to prescribe other options. Meet HANDI

AussieNeil

Administrator•8 years ago

3 Replies

Fact or fiction – is sugar addictive?

Despite the common alternative cancer treatment myth that reducing our sugar consumption will help our body fight against cancer, 'excessive consumption of...

Despite the common alternative cancer treatment myth that reducing our sugar con...

AussieNeil

Administrator•8 years ago

7 Replies

Bleeding

Though my numbers as recently reported are good I've noticed recently that even the slightest scrape bleeds like mad. I also have instances of under skin...

Though my numbers as recently reported are good I've noticed recently that even ...

RJR1

•8 years ago

8 Replies

After abandoning FLAIR Limbo land

Came off Ibrutinib/Riutximab FLAIR trail almost 8 months ago due to bad side effects, and was warned 2 months ago that more treatment may soon be necessary....

Came off Ibrutinib/Riutximab FLAIR trail almost 8 months ago due to bad side eff...

romarin

•8 years ago

22 Replies

Health Check: are naps good for us?

When to nap, how long to nap, one nap or two, what's best for us? 'Insufficient sleep not only affects our overall performance, but can affect some...

When to nap, how long to nap, one nap or two, what's best for us? 'Insufficient ...

AussieNeil

Administrator•8 years ago

8 Replies

Vitamin D protects against colds and flu, finds major global study

New Scientist reports that according to a study led by Queen Mary University of London. If everyone took vitamin D supplements, more than 3 million fewer...

New Scientist reports that according to a study led by Queen Mary University of ...

AussieNeil

Administrator•8 years ago

5 Replies

Good Numbers ...Good News

As I've posted here before I was diagnosed in Dec of 2014. Lymph nodes the size of golf balls and that was every single one in my body. W and W until May if...

As I've posted here before I was diagnosed in Dec of 2014. Lymph nodes the size ...

RJR1

•8 years ago

19 Replies

Thanks CLL and Sepsis, I'm now holed up at home and a little afraid to go out and about! Plus, how you can have an infection and not know?

Just wondering how others deal with this situation, after having a really nasty episode of sepsis (and septic shock) following yet another chest infection (8...

Just wondering how others deal with this situation, after having a really nasty ...

AnjiP

•8 years ago

24 Replies

Yippee! Just had confirmed 2 more health related talking points; with which, I can bore the pants off everyone I meet. How lucky is that?

First off, be assured that although I post rarely, I do regularly read and digest the all the posts here. I have benefited from the wealth of knowledge found...

First off, be assured that although I post rarely, I do regularly read and diges...

Bribin

•8 years ago

8 Replies

Another good result (I think)

Just received hubbys blood test results. Although HB has stayed the same ....93 WBC. 104 (was 117) Platelets. 179 (was 162) Numbers in brackets are results...

Just received hubbys blood test results. Although HB has stayed the same ....93 ...

Susiecarer

•8 years ago

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Ibrutinib resistance mutations often arise early, suggesting potential as a cue for alternative therapy

Mutations in two genes often occurred months before relapse of chronic lymphocytic leukemia (CLL) treated with ibrutinib (Imbruvica), suggesting potential...

Mutations in two genes often occurred months before relapse of chronic lymphocyt...

AussieNeil

Administrator•8 years ago

5 Replies

Ibrutinib and weight gain?

So I've been on ibrutinib for about 16 months and doing very well. However, I've gained 7 pounds! Trying to figure out how much of this is due to the drug...

So I've been on ibrutinib for about 16 months and doing very well. However, I've...

cook4650

•8 years ago

19 Replies

Help! Slow down the progression of CLL

I could really use some advice. I went for my routine three month checkup yesterday. My numbers have increased and the doctors say this is an indicator of...

I could really use some advice. I went for my routine three month checkup yester...

Jemisavs5

•8 years ago

48 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2017

Joint Pain

treatment when liver counts are off?

Ibrutinib / Venetoclax

How fake drugs end up in our public health system (and how to spot them)

Restarted Ibnutrib

High Uric Acid level

Validation of a vitamin D replacement strategy in vitamin D-insufficient CLL patients...

Shouting out to the CLL community in Ireland

Psilocybin Mushrooms and Anxiety over Cancer

12th Anniversary at Untreated

Ibnutrib restarted

CLL and appendectomy

Where?

Eye and facial problems - CLL or something else?

Oxford update

Uninformed

Good news

Drugs don’t cure everything – doctors can be helped to prescribe other options. Meet HANDI

Fact or fiction – is sugar addictive?

Bleeding

After abandoning FLAIR Limbo land

Health Check: are naps good for us?

Vitamin D protects against colds and flu, finds major global study

Good Numbers ...Good News

Thanks CLL and Sepsis, I'm now holed up at home and a little afraid to go out and about! Plus, how you can have an infection and not know?

Yippee! Just had confirmed 2 more health related talking points; with which, I can bore the pants off everyone I meet. How lucky is that?

Another good result (I think)

Ibrutinib resistance mutations often arise early, suggesting potential as a cue for alternative therapy

Ibrutinib and weight gain?

Help! Slow down the progression of CLL

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