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CLL Support

22,532 members • 38,709 posts

All posts for December 2018

CLL TREATMENT

Has anyone used Disulfarm Effervescent for CLL ?

Dsingh

•5 years ago

10 Replies

Always on my mind

When I am not thinking about this cll, everything is fine. When I am just relaxing i start thinking about it and I start taking deep breathes. Worry......This...

When I am not thinking about this cll, everything is fine. When I am just relax...

larry54

•5 years ago

31 Replies

restless legs

I had my second day of chemo today after a bad night not being able to sleep because of restless legs. Consultant said it was the chemo - Bendamustine and...

I had my second day of chemo today after a bad night not being able to sleep bec...

snowdroprose

•5 years ago

7 Replies

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Starting BR January 17th

I’m starting Chemo (BR) Jan 16th. It’s scheduled to be once a month for 6 months. I am 68yrs old and will be given the “over 70” protocol. I gather this is a...

I’m starting Chemo (BR) Jan 16th. It’s scheduled to be once a month for 6 months...

Estate1

•5 years ago

24 Replies

Itching rash with cll

I am 60 and have known about my CLL for 2 years. Several times over the past year I will break out with an itching rash that looks like hives. They may remain...

I am 60 and have known about my CLL for 2 years. Several times over the past yea...

Bluegillking

•5 years ago

5 Replies

CLL Advocates Network Horizons 2018 conference videos available.

Hello all, Please find the videos of CLL Advocates Network conference that took place last September. This is a great resource for the wider CLL community....

Hello all, Please find the videos of CLL Advocates Network conference that took...

Irishcll

•5 years ago

4 Replies

Going on Medicare part D

My husband is retiring and our prescription health insurance will be Medicare part D. He is on Imbruvica. Just found out we will pay $6000 a month, for 2...

My husband is retiring and our prescription health insurance will be Medicare pa...

Progressiverummy123

•5 years ago

16 Replies

White Cell Count

Please help me understand white count numbers I am reading in various posts. I see numbers like 20, 30, and in one post recently 300. I was diagnosed in...

Please help me understand white count numbers I am reading in various posts. I ...

wizzard166

•5 years ago

11 Replies

It turns out it matters not only what meds you get but the also the order you get them in

Hi, Happy Winter Solstice. Very soon the days can only get brighter and the sun rise higher, at least in the Northern Hemisphere. ASH 2018 was amazing for its...

Hi, Happy Winter Solstice. Very soon the days can only get brighter and the sun ...

bkoffman

CLL CURE Hero•5 years ago

2 Replies

website confusion

I really wish that owners of websites on the global internet would state which country they are based in. Is HealthUnlocked Australian?

I really wish that owners of websites on the global internet would state which c...

Jotame

•5 years ago

16 Replies

Cll lumps on head

My dad has been diagnosed with cll ( in June) and at his last blood test they said all was fine and that he should come again in 6 months time ( his previous...

My dad has been diagnosed with cll ( in June) and at his last blood test they sa...

Suskime

•5 years ago

8 Replies

Headaches

Is there a connection between cll and headaches?

Angela_G

•5 years ago

2 Replies

Update

Just an update on my husband's cll his white cell count has gone up but still all is good at the minute and also from a post of mine from a few months back my...

Just an update on my husband's cll his white cell count has gone up but still al...

Nikkij81

•5 years ago

6 Replies

NO amitryptiline while on Imbuverica or Calquence

My regular hemotologist is on vacation and I saw his associate today. He jerked when I said I had been on amitryptiline. He feels it played a role in my bad...

My regular hemotologist is on vacation and I saw his associate today. He jerked ...

profrich

•5 years ago

3 Replies

Cll and being breathless.

About 4 years ago I was diagnosed with cll. I've noticed over a few years I'm getting breathless more often and it's lead to panic attacks. A doctor Darren...

About 4 years ago I was diagnosed with cll. I've noticed over a few years I'm ge...

Marktruckingkelly

•5 years ago

8 Replies

ASH 2018: Professor Peter Hillmen on the Combination of Ibrutinib and Obinutuzumab in CLL: Timing Matters

Today we start with an important abstract from the United Kingdom that may have significant immediate and future treatment implications. - Professor Peter...

Today we start with an important abstract from the United Kingdom that may have ...

lankisterguy

Volunteer•5 years ago

19 Replies

Acalabrutinib vs Ibrutinib

I have been on ibrutinib 140 mg for B cell lymphoma for 18 months my wbc count down from 60k to 14k and doing fine but in spite being on the smallest dose I am...

I have been on ibrutinib 140 mg for B cell lymphoma for 18 months my wbc count d...

Sam-1

•5 years ago

14 Replies

fever, stomach unease and fatigue

hi dear all my husband was diagnosed 2014, now WBC 200,000, spleen 21cm - started feeling uncomfortable stomach, has 37C fever for 2 weeks now, fatigue - are...

hi dear all my husband was diagnosed 2014, now WBC 200,000, spleen 21cm - starte...

veranaish

•5 years ago

10 Replies

Chemo

I was diagnosed with CLL in February. After a few months and labs not looking good I started chemo. I think it is Gayza? Well December 27th will be the 12th...

I was diagnosed with CLL in February. After a few months and labs not looking go...

Mamawof25

•5 years ago

20 Replies

Introduction

Hi, I’ve just been diagnosed with CLL and I intend to immediately change my lifestyle and diet by reducing alcohol, loosing weight and doing more exercise. Can...

Hi, I’ve just been diagnosed with CLL and I intend to immediately change my life...

Trev1

•5 years ago

28 Replies

stopping Ibrutinib

I had to stop Ibrutinib for 7 days prior to an operation to remove a cancer tumor from my bladder and another 7 days after the surgery. Also, in 3 week time I...

I had to stop Ibrutinib for 7 days prior to an operation to remove a cancer tumo...

barger1951

•5 years ago

25 Replies

Anyone having diagnosed High risk CLL overlapping with SLL with Marrow involvement?

When one should get treatment started for mentioned situation?

Supratim

•5 years ago

9 Replies

What is the relevance of "Atypical Lymphocyte count"

The US Veterans Administration has recently added the parameter called "atypical lymphocyte count" to my periodic CBC blood test. I have CLL currently on a w...

The US Veterans Administration has recently added the parameter called "atypical...

markjeep51

•5 years ago

2 Replies

Bands cell count has been added to my CBC blood tests - Why?

Have CLL currently on w & w protocol. My last periodic blood test at the US Veterans Administration has apparently added another parameter to my CBC blood...

Have CLL currently on w & w protocol. My last periodic blood test at the US Vet...

markjeep51

•5 years ago

8 Replies

Leukaemia Care CLL Support Groups

Leukaemia care have announced the dates for their CLL Support groups for 2019 in Nottingham and Cambridge. Follow link for dates....

Leukaemia care have announced the dates for their CLL Support groups for 2019 in...

Myrddin

•5 years ago

Be the first to reply

Protein Shake

Hi guys, can someone with sll or cll have protein shake during workouts? Thank you !

Hi guys, can someone with sll or cll have protein shake during workouts? Thank ...

krikri1989ho

•5 years ago

26 Replies

Question about ibrutinib

Hi all, I posted here once, about 6 months ago. I am a 34 yeard old dutch male from Amsterdam, and i have CLL with unfavorable prognosis. I had FCR, and some...

Hi all, I posted here once, about 6 months ago. I am a 34 yeard old dutch male...

JanAmsterdam

•5 years ago

7 Replies

Labs and elevated numbers

Hi. I just got done with my check up with hem doc. The last time that I seen him was June 2018 but I have been doing blood work every 3 months. Last blood...

Hi. I just got done with my check up with hem doc. The last time that I seen h...

honey1969

•5 years ago

7 Replies

“Closing One Door, Opening Another” by Dr. Brian Koffman from CLL Society

Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote himself...

Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a ...

Anastasia1

•5 years ago

16 Replies

FCR, novel agents, advances in CLL treatment, what CLL patients can hope for in the future. Australian experts discuss advances at ASH2018

Great to hear of real change beginning to happen in CLL, we really do have a reason to be hopeful. Leukaemia Care have interviewed global experts at The...

Great to hear of real change beginning to happen in CLL, we really do have a rea...

HAIRBEAR_UK

Founder Admin•5 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2018

CLL TREATMENT

Always on my mind

restless legs

Starting BR January 17th

Itching rash with cll

CLL Advocates Network Horizons 2018 conference videos available.

Going on Medicare part D

White Cell Count

It turns out it matters not only what meds you get but the also the order you get them in

website confusion

Cll lumps on head

Headaches

Update

NO amitryptiline while on Imbuverica or Calquence

Cll and being breathless.

ASH 2018: Professor Peter Hillmen on the Combination of Ibrutinib and Obinutuzumab in CLL: Timing Matters

Acalabrutinib vs Ibrutinib

fever, stomach unease and fatigue

Chemo

Introduction

stopping Ibrutinib

Anyone having diagnosed High risk CLL overlapping with SLL with Marrow involvement?

What is the relevance of "Atypical Lymphocyte count"

Bands cell count has been added to my CBC blood tests - Why?

Leukaemia Care CLL Support Groups

Protein Shake

Question about ibrutinib

Labs and elevated numbers

“Closing One Door, Opening Another” by Dr. Brian Koffman from CLL Society

FCR, novel agents, advances in CLL treatment, what CLL patients can hope for in the future. Australian experts discuss advances at ASH2018

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