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CLL Support

23,337 members•40,046 posts

All posts for August 2016

Who's had shingles?

Im currently suffering from a really bad case of shingles and have just been refered back to hospital. Im told its a serious condition for people with CLL and...

Im currently suffering from a really bad case of shingles and have just been ref...

grizzlebear

•8 years ago

13 Replies

Zika virus

I'm in a clinical trial for CLL and responding well. I have a trip planned to Florida, which is having a outbreak of the Zika virus, caused by the mosquito,...

I'm in a clinical trial for CLL and responding well. I have a trip planned to F...

GratefulOne

•8 years ago

6 Replies

extreme tiredness

My father is feeling extreme tired while taking Imbruvica, he almost finished 90 capsules and having gastro problems. Do you know how long will this tiredness...

My father is feeling extreme tired while taking Imbruvica, he almost finished 90...

chimini

•8 years ago

5 Replies

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FISH

hi all a while since I have posted for the first time it has said on a hospital letter FISH deletion of ATM(11q 22 -q23) can any one enlighten me ,im...

hi all a while since I have posted for the first time it has said on a hospital...

mush56

•8 years ago

2 Replies

Fish Oil

From what i have read, fatty acids may play a role in reducing lymphocytes. Does that mean fish oil tablets would be a good idea?

From what i have read, fatty acids may play a role in reducing lymphocytes. Does...

gogosox59

•8 years ago

3 Replies

Health Insurance Question

I am 55 years old on watch and wait. My counts are slowly rising over the last year. I am the primary breadwinner in my family. What can I do for health...

I am 55 years old on watch and wait. My counts are slowly rising over the last ...

jjaarons

•8 years ago

9 Replies

FISH Results

Hello again, Just got back from hubby's haematologist appointment with FISH results...it showed he has 13q- with RB1. Doctor said it is one of the better...

Hello again, Just got back from hubby's haematologist appointment with FISH resu...

Fofow

•8 years ago

5 Replies

inPractice Oncology CLL resource updated

Clinical Care Options inPractice chapter on CLL, authored by Jacqueline Barrientos, MD and Kanti Rai, MD, was updated earlier this month (8th August 2016). Key...

Clinical Care Options inPractice chapter on CLL, authored by Jacqueline Barrient...

AussieNeil

Administrator•8 years ago

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The Beginning

I'm new here! I was diagnosed in May of 2012 around my 56th birthday with CLL. Just recently (August 3rd) I began Imbruvica. I think that I am doing well....

I'm new here! I was diagnosed in May of 2012 around my 56th birthday with CLL....

PThomas

•8 years ago

13 Replies

Dr, Jeff Jones on venetoclax after failing ibrutinib or idelalisib

Hi, I’m sorta back in the swing of things and have partially caught up on sleep finally. This week in the Conference Coverage section, we’ve posted an...

Hi, I’m sorta back in the swing of things and have partially caught up on sleep ...

bkoffman

CLL CURE Hero•8 years ago

4 Replies

OSU Trial Cycle 3, Week 3 Update

I was back at OSU Monday night so I could make my 7:30 am Tuesday appointment. This week, we escalated from 50 to 100 mg of venetoclax. Thankfully, they let...

I was back at OSU Monday night so I could make my 7:30 am Tuesday appointment. T...

thompsonellen

•8 years ago

12 Replies

IS THIS CLL? DO OTHERS HAVE THIS?

Went to sleep easily and then suddenly woke up in 2 hours. Couldn't get back to sleep. Toss and turn and up and down and feeling horrible. Heavy eyelids...

Went to sleep easily and then suddenly woke up in 2 hours. Couldn't get back to ...

JosephVidmar

•8 years ago

7 Replies

Lymph glands uncomfortable

Hi I'm still waiting for my appointment with my hematologist in 2 weeks. I was diagnosed about 5 weeks ago and waiting for my bloods to see what state my cells...

Hi I'm still waiting for my appointment with my hematologist in 2 weeks. I was d...

ABloor

•8 years ago

4 Replies

Jules update

Hi All It went ok yesterday over a period of a year my ALC has gone from 76.05 - 85.56 - 69.20 She said they rwere excellent but i did note in the same period...

Hi All It went ok yesterday over a period of a year my ALC has gone from 76.05 -...

TheFlyer

•8 years ago

6 Replies

Hearing loss

I have had fairly rapid onset hearing loss starting around month 6 of ibrutinib treatment, now in my ninth month. Has anyone else experienced this, or is it...

I have had fairly rapid onset hearing loss starting around month 6 of ibrutinib ...

morris2m

•8 years ago

4 Replies

Cancerversery

Today marks one year of my official CLL diagnosis. I have been riding the roller-coaster of emotions that I'm sure most of us have experienced especially...

Today marks one year of my official CLL diagnosis. I have been riding the roller...

Jerseywish2011

•8 years ago

4 Replies

Acalabutrinib: any trials available if you were on a different BTK drug?

Hi, I just got disappointing news that I am excluded from the NIH acalabutrinib trials because I had been on Imbruvica. They said they did not know if there...

Hi, I just got disappointing news that I am excluded from the NIH acalabutrinib ...

Jill4

•8 years ago

3 Replies

A good visit to the dentist

A molar with an old amalgam filling began aching and became rather sensitive to hot and cold drinks a few days ago. When the back of my neck began aching as...

A molar with an old amalgam filling began aching and became rather sensitive to ...

AussieNeil

Administrator•8 years ago

10 Replies

ALC calculation

Hi Everybody, Can you please help me decide what my ALC reading is? My WCC shows 45.9 My lymphocytes 38.11

Hi Everybody, Can you please help me decide what my ALC reading is? My WCC shows...

Hidden

•8 years ago

2 Replies

CLL specialist in SE England

Anyone know of C.L.L. specialist in South East England please? Returning to Sussex soon and not sure if Haematologist at Eastbourne District Hosp is one. Many...

Anyone know of C.L.L. specialist in South East England please? Returning to Suss...

luckyackerl

•8 years ago

16 Replies

Leukemia CLL

Hi, I am 65 years old and have known about my Pelger-Huet Syndrome since 1992 (copie of Leukemia) and about my real Leukemia since 2006, but till now I was...

Hi, I am 65 years old and have known about my Pelger-Huet Syndrome since 1992 (c...

vrenmul

•8 years ago

1 Reply

Since we are at risk for skin cancer....

Article on melanoma. http://www.msn.com/en-us/health/medical/israeli-scientists-say-they-can-block-melanoma-spread/ar-BBvXpb7?OCID=ansmsnnews11

Article on melanoma. http://www.msn.com/en-us/health/medical/israeli-scientists-...

nkferg

•8 years ago

2 Replies

13q deletion.

Could someone please explain in a little more detail what 13q deleted as the sole abnormality identified by Fish??? Thank you so much. Maria

Could someone please explain in a little more detail what 13q deleted as the sol...

meemsdream

•8 years ago

5 Replies

Ibrutinib and Dizziness

Does anyone on Ibrutinib else suffer from dizziness when you get up or down suddenly?

Does anyone on Ibrutinib else suffer from dizziness when you get up or down sud...

Mayor44

•8 years ago

5 Replies

Pre-Diagnosis Symptoms

This is such a wonderful supportive forum. Thank you to all for responding to all my questions. I have another. Is it possible to have CLL-related symptoms...

This is such a wonderful supportive forum. Thank you to all for responding to a...

Ned1

•8 years ago

4 Replies

recent blood results

Hello I have been diagnosed with MBL I have not posted for two years on this site as I have been keeping well. However at my recent six monthly haematology...

Hello I have been diagnosed with MBL I have not posted for two years on this sit...

janet803

•8 years ago

2 Replies

Sore feet with CLL

The soles of my feet are very hot and swollen and painful . Pins and needles type pain ..... Is this related to CLL and what can I do to stop it !! Making it...

The soles of my feet are very hot and swollen and painful . Pins and needles typ...

Decodes

•8 years ago

6 Replies

I'm new here. I have been experiencing extreme anxiety and depression on Imbruvica and wonder if anyone else is having these issues.

Has anyone experienced severe anxiety and depression from Imbruvica?

tootser611

•8 years ago

23 Replies

Joint Pain and CLL

Hi I'm recently diagnosed with CLL. Prior to being diagnosed I had attributed my joint pain (hips, knees, elbows) to jogging for 40 years, and other regular...

Hi I'm recently diagnosed with CLL. Prior to being diagnosed I had attributed m...

Ned1

•8 years ago

9 Replies

Support group meeting for those in Cardiff (UK) and the South Wales area affected by a chronic blood cancer like CLL - Weds 14th September

Hello friends Earlier in the summer a local Chronic Blood Cancer Support Group for people in Cardiff and surrounding areas was launched. The support group is...

Hello friends Earlier in the summer a local Chronic Blood Cancer Support Group ...

HAIRBEAR_UK

Founder Admin•8 years ago

1 Reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2016

Who's had shingles?

Zika virus

extreme tiredness

FISH

Fish Oil

Health Insurance Question

FISH Results

inPractice Oncology CLL resource updated

The Beginning

Dr, Jeff Jones on venetoclax after failing ibrutinib or idelalisib

OSU Trial Cycle 3, Week 3 Update

IS THIS CLL? DO OTHERS HAVE THIS?

Lymph glands uncomfortable

Jules update

Hearing loss

Cancerversery

Acalabutrinib: any trials available if you were on a different BTK drug?

A good visit to the dentist

ALC calculation

CLL specialist in SE England

Leukemia CLL

Since we are at risk for skin cancer....

13q deletion.

Ibrutinib and Dizziness

Pre-Diagnosis Symptoms

recent blood results

Sore feet with CLL

I'm new here. I have been experiencing extreme anxiety and depression on Imbruvica and wonder if anyone else is having these issues.

Joint Pain and CLL

Support group meeting for those in Cardiff (UK) and the South Wales area affected by a chronic blood cancer like CLL - Weds 14th September

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