Posts - CLL Support | HealthUnlocked

CLL Support

23,253 members•39,949 posts

All posts for January 2018

The Devil closes in as we age

There seems to be more younger patients with CLL than there has been and I have pondered a reason but have no solid answer. When we were all diagnosed we were...

There seems to be more younger patients with CLL than there has been and I have ...

Berrytog

•7 years ago

5 Replies

Clinical Trial

Hi guys, I've been selected for the Ibrutinib/Venetoclax trial. I'm just waiting to be "randomised" for whatever treatment I end up with. Must admit I'm...

Hi guys, I've been selected for the Ibrutinib/Venetoclax trial. I'm just waiting...

Daveyo

•7 years ago

25 Replies

cLL white cell count

My numbers keep slowly going up - my question is - do they ever go down some? I know this will never go away but maybe it can level off for a bit?

My numbers keep slowly going up - my question is - do they ever go down some? I ...

betsyv

•7 years ago

12 Replies

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Neutropenia with Ibrutinib

I wonder if anyone experienced neutropenia with Ibrutinib and how it was managed in such a case. My father was taken off Venetoclax due to a limited response...

I wonder if anyone experienced neutropenia with Ibrutinib and how it was managed...

artkula

•7 years ago

6 Replies

Infiltration = BMB?

Hi, A few questions :): when the dr says s/he wants to check "infiltration", is that something that can only be accomplished by BMB? for a patient not in...

Hi, A few questions :): when the dr says s/he wants to check "infiltration", is...

Hidden

•7 years ago

26 Replies

Trying to find info

My cousin Jim got diagnosed with it recently

Barkereloise

•7 years ago

8 Replies

Vision problem

Hi, I have been having treatment since November 2016, a combination of Obinutuzumab and Chlorambucil. I am having difficulty with my vision. Neither my old or...

Hi, I have been having treatment since November 2016, a combination of Obinutuzu...

Abc123qaz

•7 years ago

9 Replies

My winter walk

I was unable to take part in winter walk today I have had chest infection for last ten days I also had a fall in the house last week and recovering well My...

I was unable to take part in winter walk today I have had chest infection for la...

surjeet44

•7 years ago

4 Replies

Iron

Hello Can anyone please tell me if they have had high ferritin levels and whether it is connected to CLL? I am on the W and W programme since diagnosis in...

Hello Can anyone please tell me if they have had high ferritin levels and wheth...

Ingatrams

•7 years ago

18 Replies

18months after FLAIR trial and hip arthritis looms....

18 months since abandoning FLAIR trial of Ibrutinib and Rituximab have been pretty well but the blood results are worsening and more treatment suggested soon-...

18 months since abandoning FLAIR trial of Ibrutinib and Rituximab have been pret...

romarin

•7 years ago

4 Replies

Foundation Testing

Just found this online. It was a financial presentation but also has a lot of technical info on foundation tests: A presentation by Troy Cox, Foundation...

Just found this online. It was a financial presentation but also has a lot of te...

TXteacher

•7 years ago

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CLL options

I am a male; 69; have CLL; had bone marrow biopsy; live in Katy, TX; my white count is 69; as of last week; was 32 in July; so has doubled in 6 months; (was...

I am a male; 69; have CLL; had bone marrow biopsy; live in Katy, TX; my white co...

oldguy68

•7 years ago

21 Replies

Foundation genetic testing

New Generation Sequencing company: Foundation Medicine, Inc., and I think the test is called FoundationOne Heme. A couple people asked me about this in a...

New Generation Sequencing company: Foundation Medicine, Inc., and I think the te...

TXteacher

•7 years ago

1 Reply

CLL; when is treatment?

I am a new to this site; My white count was discovered to be 14 by my PCP; she sent me to oncologist; who sent me for blood tests; they took 13 viles; results...

I am a new to this site; My white count was discovered to be 14 by my PCP; she s...

oldguy68

•7 years ago

27 Replies

Visual and functional changes on the site

Hi everyone, Health Unlocked has just implemented a new layout in the navigation bar on top of the page. Messages and notifications have switched places and...

Hi everyone, Health Unlocked has just implemented a new layout in the navigation...

AussieNeil

Administrator•7 years ago

20 Replies

Failed bone marrow biopsy

I had a bone marrow biopsy Tuesday of this week. The doctor was unable to get any marrow during the procedure. He said he was going to hospitalize me, put me...

I had a bone marrow biopsy Tuesday of this week. The doctor was unable to get an...

Hidden

•7 years ago

10 Replies

Tongue biting

Ok, this may be crazy, I keep biting the sides of my tongue and mouth since starting FCR. I have bruises and raw spots. This mostly happens at night but also...

Ok, this may be crazy, I keep biting the sides of my tongue and mouth since star...

Mosaicgigi

•7 years ago

9 Replies

CLL with AIHA: progressive anemia

First post: I was diagnosed in May 2016 with CLL and AIHA (auto-immune hemolytic anemia) in May 2016. I have been W&W since that time. My WBCs(33.5K/UL) and...

First post: I was diagnosed in May 2016 with CLL and AIHA (auto-immune hemolytic...

mrivinus

•7 years ago

9 Replies

Ibrutinib / Venetoclax (Ramp up)

Hi everyone. Well its been a while since the last time I posted. I wanted to share my experience so far on the Clinical Trial I'm on IB with V. I have been on...

Hi everyone. Well its been a while since the last time I posted. I wanted to sh...

BCTexas

•7 years ago

25 Replies

What are antioxidants? And are they truly good for us?

"A healthy diet is the most effective way to get the antioxidants your body needs. Fruits, vegetables, grains, eggs and nuts are all useful sources of...

"A healthy diet is the most effective way to get the antioxidants your body need...

AussieNeil

Administrator•7 years ago

5 Replies

Chemo Side Effects FCR

Hi everyone! My dad is on his 4th round of what they call “aggressive chemo” for NHL. He is taking FCR with monthly infusions of antibodies,antibirala,...

Hi everyone! My dad is on his 4th round of what they call “aggressive chemo” for...

Whitehouse_77

•7 years ago

1 Reply

8 months into OHSU drug trial (Obinituzumab, Ublituximab, Bendamustine) doing well!

Hello fellow CLL-ers! I haven't posted much, as we all know, balancing life and this disease proves challenging. I thought it might be time for an update in...

Hello fellow CLL-ers! I haven't posted much, as we all know, balancing life an...

ChrisLovesLife

•7 years ago

1 Reply

This trial is going to reopen- Called CAPTIVATE. Ibrutinib plus venetoclax study sponsored by Pharmacyclics - Study Number PCYC-1142 .

FYI, The ibrutinib plus venetoclax study sponsored by Pharmacyclics is the PCYC-1142 trial. This trial has enrolled 150 patients thus far and was closed to...

FYI, The ibrutinib plus venetoclax study sponsored by Pharmacyclics is the PCYC-...

Hoffy

•7 years ago

27 Replies

Normal test values for Canada/U.K. and U.S.

I've seen posts on here before with normal values and conversions between SI and U.S. values but many of the links are now dead or the tables were very...

I've seen posts on here before with normal values and conversions between SI and...

bhayes84

•7 years ago

7 Replies

CLL Support Group in Philadelphia

There is a CLL Peer to Peer Support Group in Media, PA on January 13th from 2-3:30 PM. If anyone is interested please let me know and I will send info.

There is a CLL Peer to Peer Support Group in Media, PA on January 13th from 2-3:...

MonD

•7 years ago

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How many of us with CLL still work full-time?

I know that we all have dramatically different symptoms and are at various stages. But my Occ Health department has insisted that my hours were reduced. I'm...

I know that we all have dramatically different symptoms and are at various stage...

DMF_online

•7 years ago

16 Replies

Skin patch could thwart antibiotic resistance

With our greater reliance on antibiotics to help us overcome infections, it's encouraging to read of approaches that aim to extend the time before antibiotic...

With our greater reliance on antibiotics to help us overcome infections, it's en...

AussieNeil

Administrator•7 years ago

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Will Sll/Cll have a cure in ten years?

Will it be possible?

Krikri1989

•7 years ago

3 Replies

(At least) five reasons you should wear gardening gloves

Many of us derive great pleasure from our gardens, but we need to guard against infection risks. Mark Blaskovich, Senior Research Officer, The University of...

Many of us derive great pleasure from our gardens, but we need to guard against ...

AussieNeil

Administrator•7 years ago

12 Replies

The Progress and Promise of Gene Editing (CRISPR-Cas9) - What's next for the field: epigenetic editing, the 'dark genome

"New technologies such as the CRISPR-Cas9 offer the possibility of altering an individual's genome, or even a generation's genome. : Most of the research...

"New technologies such as the CRISPR-Cas9 offer the possibility of altering an i...

AussieNeil

Administrator•7 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2018

The Devil closes in as we age

Clinical Trial

cLL white cell count

Neutropenia with Ibrutinib

Infiltration = BMB?

Trying to find info

Vision problem

My winter walk

Iron

18months after FLAIR trial and hip arthritis looms....

Foundation Testing

CLL options

Foundation genetic testing

CLL; when is treatment?

Visual and functional changes on the site

Failed bone marrow biopsy

Tongue biting

CLL with AIHA: progressive anemia

Ibrutinib / Venetoclax (Ramp up)

What are antioxidants? And are they truly good for us?

Chemo Side Effects FCR

8 months into OHSU drug trial (Obinituzumab, Ublituximab, Bendamustine) doing well!

This trial is going to reopen- Called CAPTIVATE. Ibrutinib plus venetoclax study sponsored by Pharmacyclics - Study Number PCYC-1142 .

Normal test values for Canada/U.K. and U.S.

CLL Support Group in Philadelphia

How many of us with CLL still work full-time?

Skin patch could thwart antibiotic resistance

Will Sll/Cll have a cure in ten years?

(At least) five reasons you should wear gardening gloves

The Progress and Promise of Gene Editing (CRISPR-Cas9) - What's next for the field: epigenetic editing, the 'dark genome

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