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CLL Support

22,618 members • 38,849 posts

All posts for November 2019

Horrific CLL specialist visit !

I am trying out a second CLL doctor right now so I guess you can say I have two doctors. After talking to the new doc I asked if he could talk to my other doc...

I am trying out a second CLL doctor right now so I guess you can say I have two ...

JerrysGirl3

•5 years ago

53 Replies

umrd

I had the same experience many doctors different opinions I looked at bloodwork Bmb immunesystem course of treatment and asked others With Medical background...

I had the same experience many doctors different opinions I looked at bloodwork ...

mickimauser11

•5 years ago

7 Replies

Imbruvica and Afib, is there an alternative?

There has been a suggestion that my Afib is directly related to ny Imbruvica. The Imbruvica has worked wonders on my White Cells count, dropping from 103,000...

There has been a suggestion that my Afib is directly related to ny Imbruvica. T...

Irishgreek

•5 years ago

28 Replies

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Talking care of business

Lots of plans- had my annual checkup and labs including lipids and PSA and they are all good. Colonoscopy next week so off Ibrutinib 3 days before. Trying to...

Lots of plans- had my annual checkup and labs including lipids and PSA and they ...

bkoffman

CLL CURE Hero•5 years ago

24 Replies

Symptoms of CLL/SLL

What are some symptoms people have? I have thyroid cancer and sometimes can’t distinguish swellings and pain between the two.

What are some symptoms people have? I have thyroid cancer and sometimes can’t di...

JerrysGirl3

•5 years ago

8 Replies

Deleting ‘Notifications’

Sorry to be a pain but can someone please tell me how to get rid of the long list of Notifications I have accumulated. I can’t see an Edit button and I’ve...

Sorry to be a pain but can someone please tell me how to get rid of the long lis...

camper2

•5 years ago

5 Replies

Night sweats

How can I help my husband cope with his terrible night sweats? He’s getting very frustrated and angry. We are changing sheets twice a night.

How can I help my husband cope with his terrible night sweats? He’s getting very...

Chewy5

•5 years ago

10 Replies

Was anyone else here diagnosed around the age of 40?

Diagnosed at 40, stage 4, not on treatment yet.

Chewy5

•5 years ago

24 Replies

Medicare Part D explained how works

to make things easier anyone who wants part D information should read this...

Hidden

•5 years ago

2 Replies

I would like to hear from people needing regular blood transfusions

Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need...

Following from my recent post - "Fludarabine: rare side effect of destroying a...

Jotame

•5 years ago

9 Replies

Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.

I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an...

I've had a really difficult result from my bone marrow biopsy today. Four months...

Jotame

•5 years ago

10 Replies

The November Long Island CLL Society Support Group Meeting

Hi Everyone, Just wanted to remind everyone of our November meeting of the Long Island CLL Support Group Meeting, Thursday, November 14th, 6:45 - 8:45 PM at...

Hi Everyone, Just wanted to remind everyone of our November meeting of the Long...

SusanBo

•5 years ago

1 Reply

Acute ankle pain

Hi, I wonder if anyone else has experienced sudden onset of acute joint pain. I am a year post FCR chemo for CLL. Suddenly started with acute ankle pain...

Hi, I wonder if anyone else has experienced sudden onset of acute joint pain. I ...

Kingfisher20

•5 years ago

7 Replies

Ibrutinib and Medicare

In researching part D options it seems like the out of pocket cost per year will be about $10,00 for all of the companies in addition to the monthly cost of...

In researching part D options it seems like the out of pocket cost per year will...

Bicycletta

•5 years ago

34 Replies

Knee pain

Hello my fightmates. My blood tests are getting better after almost 2 years on Ibrutinib, however i have lots of knee pain. I reduced ib from 3 pills to 2...

Hello my fightmates. My blood tests are getting better after almost 2 years on I...

Deta1961

•5 years ago

5 Replies

ibrutinib and palpitations

Hi. I have been treated with Ibrutinib, 2 years and 5 months ago, it has been going well for me. but I have palpitations and before starting ibrutinib I had...

Hi. I have been treated with Ibrutinib, 2 years and 5 months ago, it has been g...

Bixilon

•5 years ago

7 Replies

CLL Specialist

After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do...

After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no...

Hidden

•5 years ago

3 Replies

Dizziness and vision problems

My mum is 6 weeks on Intrunib and is having a worrying spell of partial blindness and dizziness not being able to walk on her own has anybody else encountered...

My mum is 6 weeks on Intrunib and is having a worrying spell of partial blindnes...

Nuttydogs

•5 years ago

17 Replies

My wbc is above 80000 so what is my majer problem plz say something about high WBC count

Please help mi ...

Sunilrathod1495

•5 years ago

10 Replies

CLL Support Meeting

Hi there, I live in Southampton. United Kingdom, our next CLL Support Meeting is coming up at Southampton General Hospital, if anyone is interested and local...

Hi there, I live in Southampton. United Kingdom, our next CLL Support Meeting is...

retired46

•5 years ago

5 Replies

Ibrutinib Update

Hi everyone. I thought I would post my update of my experience so far of Ibrutinib. I have now been on Ibrutinib for 8 months following a diagnosis 2 years...

Hi everyone. I thought I would post my update of my experience so far of Ibruti...

retired46

•5 years ago

12 Replies

severe Leg Muscle pain and weakness Using Ibrutinib daily.... want to try every other day, thoughts ?

81 years old , in decent shape, (try to play pickle ball 3 times a week,) in 2012 diagnosed with CLL was put on trial of 420 mg Ibrutinib( blessing) until...

81 years old , in decent shape, (try to play pickle ball 3 times a week,) in 201...

fish61

•5 years ago

55 Replies

Leukaemia Care Updated Patient Information - Richter's Syndrome in Chronic Lymphocytic Leukaemia

Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out....

Leukaemia Care is a UK charity so the support information is UK based. However ...

Jm954

Administrator•5 years ago

23 Replies

Had anyone enter into a remission with Gazyva alone?

Hello Dear Friends, I read few stories with Gazyva here, but wanted to expand the topic and gather all opinions in one place. We are evaluating treatments for...

Hello Dear Friends, I read few stories with Gazyva here, but wanted to expand t...

paula_dae

•5 years ago

14 Replies

CLL remission

My spouse is in remission after doing 6 rounds of FCR for his CLL. His last round was in August. Since late September he has been getting small lumps under...

My spouse is in remission after doing 6 rounds of FCR for his CLL. His last rou...

DDInc65

•5 years ago

1 Reply

CLL Transformation - Richter's?

I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues...

I'm not really new, but think this is my first post. I've been one of those luc...

SarasotaPaul

•5 years ago

21 Replies

Severe Cold Symptoms

I am close to starting CLL treatment. This cold has just completely rendered me useless. Been over two weeks, non stop coughing, can't sleep at night, usual...

I am close to starting CLL treatment. This cold has just completely rendered me ...

Par3

•5 years ago

4 Replies

Started Trial today

It was kind of a rough start. I got as far as 3.9 ml in on the O drip and I felt like I was burning from the inside out. I have been flushed before but this...

It was kind of a rough start. I got as far as 3.9 ml in on the O drip and I fel...

aquafinn

•5 years ago

4 Replies

RITUXAN transfusion for CLL patient with ITP (Low platelets)?

Hey all, need some advice, W&W 4-1/2 years. I feel perfectly fine, good energy no fatigue. Today my hematologist told me I need 4-weeks of rituxan transfusions...

Hey all, need some advice, W&W 4-1/2 years. I feel perfectly fine, good energy n...

jawdfs

•5 years ago

16 Replies

Mantle Cell Lymphoma - Window 2 clinical trial

Just wonder if anyone participates in Window 2 clinical trial of MD Anderson where patients receive Ibrutinib in the first 4 months, combine with Rituximab and...

Just wonder if anyone participates in Window 2 clinical trial of MD Anderson whe...

writepa

•5 years ago

1 Reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2019

Horrific CLL specialist visit !

umrd

Imbruvica and Afib, is there an alternative?

Talking care of business

Symptoms of CLL/SLL

Deleting ‘Notifications’

Night sweats

Was anyone else here diagnosed around the age of 40?

Medicare Part D explained how works

I would like to hear from people needing regular blood transfusions

Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.

The November Long Island CLL Society Support Group Meeting

Acute ankle pain

Ibrutinib and Medicare

Knee pain

ibrutinib and palpitations

CLL Specialist

Dizziness and vision problems

My wbc is above 80000 so what is my majer problem plz say something about high WBC count

CLL Support Meeting

Ibrutinib Update

severe Leg Muscle pain and weakness Using Ibrutinib daily.... want to try every other day, thoughts ?

Leukaemia Care Updated Patient Information - Richter's Syndrome in Chronic Lymphocytic Leukaemia

Had anyone enter into a remission with Gazyva alone?

CLL remission

CLL Transformation - Richter's?

Severe Cold Symptoms

Started Trial today

RITUXAN transfusion for CLL patient with ITP (Low platelets)?

Mantle Cell Lymphoma - Window 2 clinical trial

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