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CLL Support

22,532 members • 38,709 posts

All posts for April 2018

Extreme heat intolerance

How can I be treated for heat intolerance..'I suffer heatstroke even when indoors..'.throbbing headaches, pulling sensation Bach of neck neck shoulders,...

How can I be treated for heat intolerance..'I suffer heatstroke even when indoor...

otiliacar

•6 years ago

2 Replies

Absolute Monocytes up?

Hi CLL'ers, I'm going to see my Dr. in a few days, I m able to get blood work results on line beforehand which is great. I can't stand that waiting. So I am...

Hi CLL'ers, I'm going to see my Dr. in a few days, I m able to get blood work re...

lorna222

•6 years ago

6 Replies

Pneumonia

Has anyone had pneumonia and if so did it last long. Dr said bed rest because of the CLL

Has anyone had pneumonia and if so did it last long. Dr said bed rest because of...

annabelle63

•6 years ago

22 Replies

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Doctor recommendation pls

Hi all. I'm a newbie... Been reading but not contributing for a couple months. I just want to say how impressed I am by this forum - all the detailed medical...

Hi all. I'm a newbie... Been reading but not contributing for a couple months. I...

Bethro

•6 years ago

9 Replies

blood test

HI, I HAVE BLOOD TEST (NRBC 0.1000) which is high the normal should be zero so, what does it mean. thanks sam bawadi

HI, I HAVE BLOOD TEST (NRBC 0.1000) which is high the normal should be zero so,...

bawadisam

•6 years ago

2 Replies

What should I ask?

Going on Tuesday for my second opinion @Moffitt Center in Tampa. I was there last month for initial consultation. They will go over blood work/findings and...

Going on Tuesday for my second opinion @Moffitt Center in Tampa. I was there las...

GMa27

•6 years ago

41 Replies

The CAR-T Killing Frenzy is Done: Time to Celebrate Being Cancer Free

Hi, It’s been very very tough, but I got what I came to Seattle for. MRD- negative in the blood and the marrow and nodes almost completely back to normal....

Hi, It’s been very very tough, but I got what I came to Seattle for. MRD- negati...

bkoffman

CLL CURE Hero•6 years ago

80 Replies

Lump on back head

My 3 year old son has pea sized lumps on back head and it seems like growing. It's movable, he says he gets headache sometime.

My 3 year old son has pea sized lumps on back head and it seems like growing. It...

Lalitara

•6 years ago

1 Reply

Don't know if this info is out there yet, but I just wanted to share

So, as of February 9, 2017 (I know it's a year old, but I'm just learning it now and maybe others don't know), scientists have linked the risk of developing...

So, as of February 9, 2017 (I know it's a year old, but I'm just learning it now...

kjharvey

•6 years ago

12 Replies

Anyone recommend alternative treatments?

Does anyone have recommendations for using tumeric, green tea, apple cider and baking soda or citrus essential oil ingestion for cll? I am in watch and wait...

Does anyone have recommendations for using tumeric, green tea, apple cider and b...

Dawnclark

•6 years ago

9 Replies

Thank You!

Thanks to all who replied to my post yesterday. It made my day. Thos site has been such an encouragement for me and I can’t thank you guys enough for the...

Thanks to all who replied to my post yesterday. It made my day. Thos site has ...

BeckyLUSA

•6 years ago

1 Reply

Clinical Trial information

CLL specialist Dr. Kerry Rogers will present an important online or in person informational program focussing on Clinical Trials. This program will be streamed...

CLL specialist Dr. Kerry Rogers will present an important online or in person in...

ThreeWs

•6 years ago

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CLLSA Leeds Meeting report Mar 2018

The report from the Leeds conference, written by Olga, is now available https://www.cllsupport.org.uk/article/videos-leeds-meeting-23-march-2018 Videos and...

The report from the Leeds conference, written by Olga, is now available https:/...

Myrddin

•6 years ago

8 Replies

Wisdom - Tooth ?

Not sure how wise it would be for us CLL’s to have an implant anywhere however having something like this done, pre any disease, could potentially be a life...

Not sure how wise it would be for us CLL’s to have an implant anywhere however h...

Juliette02

•6 years ago

2 Replies

MBL

Hi I am new to this. My husband was diagnosed with MBL few weeks back. I just want to know whether it will lead to CLL and any other info abt MBL

Hi I am new to this. My husband was diagnosed with MBL few weeks back. I just wa...

Rifka

•6 years ago

2 Replies

Efficient control of leukaemia with treatment by dual immune-checkpoint blockade

https://www.lih.lu/blog/our-news-1/post/efficient-control-of-leukaemia-with-treatment-by-dual-immune-checkpoint-blockade-190

https://www.lih.lu/blog/our-news-1/post/efficient-control-of-leukaemia-with-trea...

Medabouhedi

•6 years ago

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A good cancer

Just wondering how all of us with a "good" type of cancer are doing..this phrase angers me to no end...People may not see the damage on our outside but it...

Just wondering how all of us with a "good" type of cancer are doing..this phrase...

walkingspirit33

•6 years ago

90 Replies

Efficient control of leukaemia with treatment by dual immune-checkpoint blockade - Luxembourg Institute of Health - 18.04.2018

https://m.medicalxpress.com/news/2018-04-efficient-leukaemia-treatment-dual-immune-checkpoint.html

https://m.medicalxpress.com/news/2018-04-efficient-leukaemia-treatment-dual-immu...

Juliette02

•6 years ago

5 Replies

It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development

Sobering reading from Milton Packer in Medscape Today "Pharmaceutical companies are developing new drugs in only two therapeutic areas these days -- cancer...

Sobering reading from Milton Packer in Medscape Today "Pharmaceutical companies ...

AussieNeil

Administrator•6 years ago

20 Replies

Privigen

Hi everyone, anyone out there on Ibrutinib together with Privigen. What to expect? Thanks in anticipation.

Hi everyone, anyone out there on Ibrutinib together with Privigen. What to expec...

Broadbent

•6 years ago

5 Replies

Greetings from Melbourne

Hi all, Just reaching out to the CLL community. This is a great site and need help I am a fairly fit 47 year old and 18 months ago I was diagnosed with...

Hi all, Just reaching out to the CLL community. This is a great site and need he...

Trav_Aus_1970

•6 years ago

7 Replies

Erica's Watch and Wait story

https://youtu.be/OB5P1cY-TvY Here is the ‘Living Well with Watch and Wait’ guide for CLL patients on Watch and Wait. This has been developed with CLL...

https://youtu.be/OB5P1cY-TvY Here is the ‘Living Well with Watch and Wait’ guid...

HAIRBEAR_UK

Founder Admin•6 years ago

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Azithromycine for cold...doctor prescribed 500 mg for 6 days... seemed to be a little strong... I have bronchitis for several days... am 78

Azithromycine.. too strong a drug?

Butitisme

•6 years ago

10 Replies

bgb 3111 vs. BR

Anyone in this trial? Thoughts on it in or not in the trial? I have to make a decision on this very soon and appreciate any comments....

Anyone in this trial? Thoughts on it in or not in the trial? I have to make a de...

baleman

•6 years ago

8 Replies

Interruption of Venetoclax

Some infections made me feel not well last weeks. I reported this today at my trialteam and I was given antibiotic and I will see an ENT doc in a few weeks...

Some infections made me feel not well last weeks. I reported this today at my tr...

Yvbb

•6 years ago

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FDA Moves To Rein In Drugmakers' Abuse Of Orphan Drug Law

All CLL drugs are developed under this act... Over three decades ago, the United States Congress passed the Orphan Drug Act (ODA) in 1983. The act focused on...

All CLL drugs are developed under this act... Over three decades ago, the United...

Cllcanada

Zarzio shots causing severe horrendous pain- any proven help for muscle and bone issues?

On and off neutropenic for two months now and now taking zarzio shots every other day but causing major debilitating pain in lower back to hips and shooting...

On and off neutropenic for two months now and now taking zarzio shots every othe...

Luckyliss

•6 years ago

6 Replies

Ibrutinib starting at just 1 pill not three. ramping up over time

Has anyone else started ibrutinib with just 1 pill not three. Ive been on 140 1 pill for a month Im 56 .. seems to be working lots of side effects. Just a...

Has anyone else started ibrutinib with just 1 pill not three. Ive been on 140 ...

CLLCOLIN

•6 years ago

4 Replies

How soon did Ibrutinib work for you?

My husband is on his 21st day of Ibrutinib, and his lymphocytes are still very high....89%, but his neutrophils did rise to 1.2 this week....and his platelets...

My husband is on his 21st day of Ibrutinib, and his lymphocytes are still very h...

kathymac5252

•6 years ago

40 Replies

Acalabrutinib Side Effects, Arrhythmia, Cardioversion and starting TGR-1202

Today I see my oncologist to, I hope, plot a path forward. Acalabrutinib has worked wonderfully for me, but at some point before the beginning of this...

Today I see my oncologist to, I hope, plot a path forward. Acalabrutinib has wo...

Ramses

•6 years ago

9 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2018

Extreme heat intolerance

Absolute Monocytes up?

Pneumonia

Doctor recommendation pls

blood test

What should I ask?

The CAR-T Killing Frenzy is Done: Time to Celebrate Being Cancer Free

Lump on back head

Don't know if this info is out there yet, but I just wanted to share

Anyone recommend alternative treatments?

Thank You!

Clinical Trial information

CLLSA Leeds Meeting report Mar 2018

Wisdom - Tooth ?

MBL

Efficient control of leukaemia with treatment by dual immune-checkpoint blockade

A good cancer

Efficient control of leukaemia with treatment by dual immune-checkpoint blockade - Luxembourg Institute of Health - 18.04.2018

It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development

Privigen

Greetings from Melbourne

Erica's Watch and Wait story

Azithromycine for cold...doctor prescribed 500 mg for 6 days... seemed to be a little strong... I have bronchitis for several days... am 78

bgb 3111 vs. BR

Interruption of Venetoclax

FDA Moves To Rein In Drugmakers' Abuse Of Orphan Drug Law

Zarzio shots causing severe horrendous pain- any proven help for muscle and bone issues?

Ibrutinib starting at just 1 pill not three. ramping up over time

How soon did Ibrutinib work for you?

Acalabrutinib Side Effects, Arrhythmia, Cardioversion and starting TGR-1202

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