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CLL Support

22,532 members • 38,709 posts

All posts for July 2017

06/28/2017 stop ibrutinib and started venetoclax

My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07

My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, fai...

wwd-bill

•7 years ago

15 Replies

New App to monitor your progress during treatment

HI everyone, I just found an app that may help you during your treatment. Just go to : chemo wave.com This is a great way to keep track of how you are doing...

HI everyone, I just found an app that may help you during your treatment. Just...

BCTexas

•7 years ago

7 Replies

CLL in stage zero.

Hello, I am new to this group and wanted to introduce myself. I was diagnosed with CLL two years ago and remain in stage zero. I am 57 years old and they...

Hello, I am new to this group and wanted to introduce myself. I was diagnosed w...

noeagaman

•7 years ago

18 Replies

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Allopurinol

When I 1st started taking ibrutinib I was prescribed 300 mg allopurinol. But as my initial cramps and aches faded after a few weeks I never took the drug as I...

When I 1st started taking ibrutinib I was prescribed 300 mg allopurinol. But as...

cartwheels

•7 years ago

19 Replies

One year on

One year to the day since I was told and the ensuing double shock, first that I had cll then to be told it had been discovered two years earlier unbeknown to...

One year to the day since I was told and the ensuing double shock, first that I ...

Nigel-Q

•7 years ago

10 Replies

Treated for CLL , one year ago

Hi. I am a male, 57 year old, in good physical condition, and diagnosed with CLL, 1 1/2 year ago. I have been treated for CLL, with FR regimen for six month,...

Hi. I am a male, 57 year old, in good physical condition, and diagnosed with CL...

tropicsurvivor

•7 years ago

12 Replies

Anyone else w/ CLL getting rashes? I need your feedback

I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission...

I'm wondering how many people with CLL is getting rashes on their shins of their...

Loulou46

•7 years ago

15 Replies

Travel insurance

Don't know if allowed to name firms but having spent 6 hours on web and phone I located an incredibly thorough insurer who was willing to offer insurance for...

Don't know if allowed to name firms but having spent 6 hours on web and phone I ...

abikaasa

•7 years ago

2 Replies

Rash continues 6 months after treatment

Hi, I finished my Gazyva treatment in December 2016. During the last few months of treatment I developed a slight rash on my forehead. Since then the rash has...

Hi, I finished my Gazyva treatment in December 2016. During the last few months ...

skinkade

•7 years ago

9 Replies

Speaking with: Professor Peter Koopman on CRISPR and the power of genome editing

The University of Melbourne’s William Isdale spoke with Professor Peter Koopman from the University of Queensland about his research into CRISPR and the...

The University of Melbourne’s William Isdale spoke with Professor Peter Koopman ...

AussieNeil

Founder Admin•7 years ago

5 Replies

Essays on health: microbes aren’t the enemy, they’re a big part of who we are. Introducing the 'holobiont'

...a radical shift in understanding the relationship between humans and microorganisms occurred with the discovery that only 50% of the cells in our bodies...

...a radical shift in understanding the relationship between humans and microorg...

AussieNeil

Founder Admin•7 years ago

Be the first to reply

Vitamin D3 Bests Vitamin D2 for Boosting Total Serum Levels. 600 IU of vitamin D3 significantly more effective in wintertime study

Low serum levels of Vitamin D are common in CLL with a low reading at diagnosis correlating with a poor prognosis. We won't know whether boosting it into...

Low serum levels of Vitamin D are common in CLL with a low reading at diagnosis ...

AussieNeil

Founder Admin•7 years ago

5 Replies

Raging Rash

I've been taking Ibrutinib for 16 months. The first 8 months I had no problems. Now 7 months ago I started having a rash on my legs, some on my chest and...

I've been taking Ibrutinib for 16 months. The first 8 months I had no problems. ...

cll2013

•7 years ago

6 Replies

Take 2 - anyone ever had a smear indicating "non-specific red blood cell changes"?

Hi all, I am new to the community, have been diagnosed in October 2016. My latest blood smear indicated "non-specific red blood cell changes". My appointment...

Hi all, I am new to the community, have been diagnosed in October 2016. My lat...

Amelie1979

•7 years ago

10 Replies

Quick update

As I previously posted, hubby is due a stoma reversal on the 25th July. We had a phone call yesterday from the CLL Clinical Nurse stating that colorectal team...

As I previously posted, hubby is due a stoma reversal on the 25th July. We had ...

Susiecarer

•7 years ago

9 Replies

Unmutated Newbie

Hello, all ~ First off, thanks to everyone for sharing information and personal experiences with CLL! I was diagnosed in March of this year, am stage 0, normal...

Hello, all ~ First off, thanks to everyone for sharing information and personal ...

yazbe

•7 years ago

9 Replies

My Dad

My lovely Dad, 17th June, a proud great grandad, with Zoe, and her first football medal.

My lovely Dad, 17th June, a proud great grandad, with Zoe, and her first footbal...

Fightingwithdad

•7 years ago

13 Replies

The fight is over.

Sadly, after an amazing, courageous fight, my Dad passed away yesterday. His eighth bout of pneumonia was too much for him, and he died peacefully and pain...

Sadly, after an amazing, courageous fight, my Dad passed away yesterday. His eig...

Fightingwithdad

•7 years ago

44 Replies

CLL Specialists in PA

Can anyone recommend a CLL Specialist in PA? I would like to get a 2nd opinion from someone considered to be an expert in the field. Thanks in advance!

Can anyone recommend a CLL Specialist in PA? I would like to get a 2nd opinion f...

CLL_Runner

•7 years ago

16 Replies

Over nine years of blogging since transplant for CLL (chronic lymphocytic leukemia) on July 1, 2008

Hi, What a long strange trip it’s been. I just posted one of my old school blog post about my CLL journey: http://bkoffman.blogspot.com Some of you have been...

Hi, What a long strange trip it’s been. I just posted one of my old school blog ...

bkoffman

CLL CURE Hero•7 years ago

9 Replies

diagnoses changed to LGL today

My doctor called today and after drawing my blood at Dartmouth and having it analyzed I have been diagnosed with LGL. Does anyone have this? He says I am in...

My doctor called today and after drawing my blood at Dartmouth and having it ana...

Merrily1952

•7 years ago

4 Replies

CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.

Hi all! After a reminder today of a member, I simply steal the time in my hectical life to finally write some, as promised earlier, about my treatment with...

Hi all! After a reminder today of a member, I simply steal the time in my hectic...

RemusTh

•7 years ago

5 Replies

Late up date

I posted on here quite a few weeks ago, but somehow it was shown, so no idea what happened there. Hope this one shows... Hubby is doing ok, saw Dr Shuh on the...

I posted on here quite a few weeks ago, but somehow it was shown, so no idea wha...

Susiecarer

•7 years ago

1 Reply

Is there a rel of wbc with RBC

I am 66m, dx 9months ago, on wnw. My onco asked me to come after 3 months. He did not address my LACK of body energy issue. RBC is 4.4. WBC 21. It is slowly...

I am 66m, dx 9months ago, on wnw. My onco asked me to come after 3 months. He di...

vinnet

•7 years ago

6 Replies

The CLL Tribune is full of articles written by CLL experts and fellow patients.

Hi, Last week we proudly published the latest issue of The CLL Tribune (http://www.cllsociety.org/newsletter/). We're so grateful to the patients and...

Hi, Last week we proudly published the latest issue of The CLL Tribune (http://w...

bkoffman

CLL CURE Hero•7 years ago

Be the first to reply

Imbruvica and painkillers

I am interested in knowing what painkillers other than Tylenol are permissible with Imbruvica. My husband has a lot of joint pain and the Tylenol just doesn't...

I am interested in knowing what painkillers other than Tylenol are permissible w...

Margobleu

•7 years ago

3 Replies

Happy 4th of July to our American members

Hope you enjoy family friends and good times. We hear so much negativity on the news I hope you can forget that for the day and have fun. A Canadian with...

Hope you enjoy family friends and good times. We hear so much negativity on the...

ap64

•7 years ago

8 Replies

Sun sensitivity

Has anyone found that they are hyper sensitive to the sun? I am doing a higher level of skin protection that I have done in the past and find myself burning...

Has anyone found that they are hyper sensitive to the sun? I am doing a higher l...

J-girl

•7 years ago

20 Replies

4 matches already

My sister is not a full tissue match so a search started last Wednesday and already 4 potential donors found. All young males which apparently are the best, 1...

My sister is not a full tissue match so a search started last Wednesday and alre...

KAS8

•7 years ago

7 Replies

New to group

Hi, I'm new to CLL(3 months). Just found this site. Glad to see that some of my symptoms are common.

Hi, I'm new to CLL(3 months). Just found this site. Glad to see that some of m...

lfm73

•7 years ago

21 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2017

06/28/2017 stop ibrutinib and started venetoclax

New App to monitor your progress during treatment

CLL in stage zero.

Allopurinol

One year on

Treated for CLL , one year ago

Anyone else w/ CLL getting rashes? I need your feedback

Travel insurance

Rash continues 6 months after treatment

Speaking with: Professor Peter Koopman on CRISPR and the power of genome editing

Essays on health: microbes aren’t the enemy, they’re a big part of who we are. Introducing the 'holobiont'

Vitamin D3 Bests Vitamin D2 for Boosting Total Serum Levels. 600 IU of vitamin D3 significantly more effective in wintertime study

Raging Rash

Take 2 - anyone ever had a smear indicating "non-specific red blood cell changes"?

Quick update

Unmutated Newbie

My Dad

The fight is over.

CLL Specialists in PA

Over nine years of blogging since transplant for CLL (chronic lymphocytic leukemia) on July 1, 2008

diagnoses changed to LGL today

CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.

Late up date

Is there a rel of wbc with RBC

The CLL Tribune is full of articles written by CLL experts and fellow patients.

Imbruvica and painkillers

Happy 4th of July to our American members

Sun sensitivity

4 matches already

New to group

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