Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for May 2016

CLL experts discuss disease symptoms, coping with emotional and financial aspects plus Q&A!

You've already seen Patient Power's morning session replay (see here if you missed it-...

You've already seen Patient Power's morning session replay (see here if you miss...

tclementi

•8 years ago

3 Replies

feeling at ease

Hi everyone i just wanted to share my good news. After reading posts and advice on the forum i decided that i would not put up with what felt like poor care...

Hi everyone i just wanted to share my good news. After reading posts and advice...

loran6t8

•8 years ago

21 Replies

Choice and timing of treatments

I have 13q deletion CLL and, apart from fatigue, have almost no other symptoms. I used to get night sweats but they are now very rare. I'm beginning to...

I have 13q deletion CLL and, apart from fatigue, have almost no other symptoms. ...

deveritt

•8 years ago

4 Replies

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

Taking Ibuprofen with Ibrutinib?? Is it OK?

FLAIR trail: One month on from end of 6 month Rituximab treatment. Taking 2/3 dose of Ibrutinib due to muscle pain problems. Now unfortunately I am still...

FLAIR trail: One month on from end of 6 month Rituximab treatment. Taking 2/3 do...

romarin

•8 years ago

8 Replies

Unrecordable Immunoglobulins - any advice?

Hi everyone, It’s been a while since I last posted, but 2015 was such a hellish year - 6 months of BR starting in January 2015, during which I had 2...

Hi everyone, It’s been a while since I last posted, but 2015 was such a hellish ...

Ruhi9

•8 years ago

14 Replies

Dr. Lamanna and Dr. Thompson Discuss what is CLL, the latest research and planning for treatment

Hello all, Wanted to make you aware of Patient Power's morning session replay from recent town meeting -...

Hello all, Wanted to make you aware of Patient Power's morning session replay f...

tclementi

•8 years ago

5 Replies

Still new to all

I am so impressed by the support you all give to everyone on this site! I feel so much better having you to reach out to and realizing I am not alone in this...

I am so impressed by the support you all give to everyone on this site! I feel s...

Kaycab

•8 years ago

18 Replies

Fyi

Friday, May 20th 2016 is Clinical Trials Day - the internationally recognised date for raising public awareness of clinical trials and acknowledging the...

Friday, May 20th 2016 is Clinical Trials Day - the internationally recognised da...

Groetjes

•8 years ago

5 Replies

Feeling optimistic

Partner had to go on chemo after suddenly going from stage a to stage c his platelets were 7 !!!!! Think there was too much waiting and not enough watching...

Partner had to go on chemo after suddenly going from stage a to stage c his plat...

Dewdles

•8 years ago

7 Replies

CLL AND BOTOX

I Feel slightly embarrased to ask this question because it seems so frivoulous, especially to those with our condition, but if I cannot ask it here, then I...

I Feel slightly embarrased to ask this question because it seems so frivoulous, ...

Que-sera-sera

•8 years ago

14 Replies

New to the community

Hi everyone. Ive just joined the community after speaking to a very kind blood buddy for the first time. Im a 44yr old male diagnosed CLL 2.5 years ago. I live...

Hi everyone. Ive just joined the community after speaking to a very kind blood b...

RockyKNX

•8 years ago

28 Replies

When a drug's side effect can prove useful for neuropathic pain

Despite what drug advertisements might try to convey, drugs (and supplements too) do not specifically target a particular organ or condition, but have a range...

Despite what drug advertisements might try to convey, drugs (and supplements too...

AussieNeil

Administrator•8 years ago

7 Replies

First CLL and now LUPUS!

I was diagnosed with CLL in December and had to start chemo right away due to the constriction of my airway. I started having severe joint pain during my last...

I was diagnosed with CLL in December and had to start chemo right away due to th...

momof12

•8 years ago

4 Replies

Team creates bone marrow on a chip

When we take the time to study what's known about CLL, we begin to find that some of what's been long assumed to be correct by researchers, is based on a...

When we take the time to study what's known about CLL, we begin to find that som...

AussieNeil

Administrator•8 years ago

Be the first to reply

BR coughing

My husband has had a cough since about the second round of BR. He is done with treatment now for about a month. He usually just coughs at night. Lots of...

My husband has had a cough since about the second round of BR. He is done with t...

Chriskw68

•8 years ago

7 Replies

New Member

Hi I'm David and I have recently been diagnosed with CLL, a great shock at first but I'm gradually getting my head around things due in no small part to the...

Hi I'm David and I have recently been diagnosed with CLL, a great shock at first...

Salohcin

•8 years ago

25 Replies

The Improvisational Oncologist - The New York Times

This is a very good article: The Improvisational Oncologist, in the New York Times: http://www.nytimes.com/2016/05/15/magazine/oncologist-improvisation.html...

This is a very good article: The Improvisational Oncologist, in the New York Tim...

Yassaa

•8 years ago

5 Replies

I'm new here

I was diagnosed with CLL in July of 2015 at the age of 50. It was found through routine blood testing. The oncologist believes that I have had CLL for 3 years....

I was diagnosed with CLL in July of 2015 at the age of 50. It was found through ...

Hidden

•8 years ago

24 Replies

Very low platelets.

My son stopped Ibrutinib and started Steroids two days ago because his platelets went down to 20 and the doctor has to figure out if it's from Ibrutinib or the...

My son stopped Ibrutinib and started Steroids two days ago because his platelets...

karenmarie

•8 years ago

4 Replies

Flair Trial Phase 3

Hello everyone, I hope your all well? Just a quick update, I am having. Ct, Bloods , and bone Marrow B next week. And if all is well, I will be starting the...

Hello everyone, I hope your all well? Just a quick update, I am having. Ct, Bl...

Carpenters52

•8 years ago

9 Replies

Easier blood tests promised by by vibrating microfluidic device - sorts via cell density rather than size, improving count accuracy

As those of us who have had a manual blood count know, the automated blood cell measuring equipment in regular use can be prone to error. The need for a more...

As those of us who have had a manual blood count know, the automated blood cell ...

AussieNeil

Administrator•8 years ago

Be the first to reply

What about Duvelisib and CLL?

Friends, This week in the Beyond the Basics/Treatment section of our website, we’ve posted an article about another treatment under investigation called...

Friends, This week in the Beyond the Basics/Treatment section of our website, we...

bkoffman

CLL CURE Hero•8 years ago

Be the first to reply

Supplements and Safety; PBS Frontline + New York Times. Follow-on from New York Attorney General's actions against major retailers last yr

A year ago, on the basis of DNA barcoding technology tests conducted on top-selling store brands of herbal supplements at four national retailers in New York...

A year ago, on the basis of DNA barcoding technology tests conducted on top-sell...

AussieNeil

Administrator•8 years ago

2 Replies

Clinic Trail Decision: FCR vs. Ibrutinib/Rituximab

I'm scheduled to start treatment for CLL in a few weeks. I live in the USA and have an opportunity to participate in a randomized clinic trail of FCR vs....

I'm scheduled to start treatment for CLL in a few weeks. I live in the USA and ...

FarmerGirl00

•8 years ago

5 Replies

FCR Rounds 5-6

Hi All, Having completed 4 rounds of FCR on the FLAIR trial I unfortunately been hospitalised on the last 2 occasions(rounds 3+4) with some some form of...

Hi All, Having completed 4 rounds of FCR on the FLAIR trial I unfortunately been...

jackhammer

•8 years ago

8 Replies

Skin cancers/lesions - Example images

Given that with CLL, we have a much higher risk of skin cancers, CLL specialist Dr Wierda recommends 'at least an annual visit with a dermatologist for skin...

Given that with CLL, we have a much higher risk of skin cancers, CLL specialist ...

AussieNeil

Administrator•8 years ago

20 Replies

Falling, Ouch!

Hi, Carole here. I have some news that I've not posted. Two weeks ago I slipped on some soap in the shower and fell on my right breast and ribs. My breast...

Hi, Carole here. I have some news that I've not posted. Two weeks ago I slippe...

ladyprescott

•8 years ago

17 Replies

Complex Karyotype

My CLL is characterized by IGVH unmutated, deletion 11q, deletion 13q, and CD38 positive. There is no question that I fall into the high risk CLL bucket. But...

My CLL is characterized by IGVH unmutated, deletion 11q, deletion 13q, and CD38 ...

Hidden

•8 years ago

7 Replies

The power of exercise

Not really sure on that but hey I just had a in between Blood test usually on 6 months. You may know I am fundraing for CLLSA :) a certain bike ride and have...

Not really sure on that but hey I just had a in between Blood test usually on 6 ...

TheFlyer

•8 years ago

14 Replies

A diagnosis

Just back from the doctor. After all the blood work and the ultra sound, he says I have ITP. Has given me dexamethasone to take. And will see me again in a...

Just back from the doctor. After all the blood work and the ultra sound, he says...

Clsmith

•8 years ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2016

CLL experts discuss disease symptoms, coping with emotional and financial aspects plus Q&A!

feeling at ease

Choice and timing of treatments

Taking Ibuprofen with Ibrutinib?? Is it OK?

Unrecordable Immunoglobulins - any advice?

Dr. Lamanna and Dr. Thompson Discuss what is CLL, the latest research and planning for treatment

Still new to all

Fyi

Feeling optimistic

CLL AND BOTOX

New to the community

When a drug's side effect can prove useful for neuropathic pain

First CLL and now LUPUS!

Team creates bone marrow on a chip

BR coughing

New Member

The Improvisational Oncologist - The New York Times

I'm new here

Very low platelets.

Flair Trial Phase 3

Easier blood tests promised by by vibrating microfluidic device - sorts via cell density rather than size, improving count accuracy

What about Duvelisib and CLL?

Supplements and Safety; PBS Frontline + New York Times. Follow-on from New York Attorney General's actions against major retailers last yr

Clinic Trail Decision: FCR vs. Ibrutinib/Rituximab

FCR Rounds 5-6

Skin cancers/lesions - Example images

Falling, Ouch!

Complex Karyotype

The power of exercise

A diagnosis

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive