Posts - CLL Support | HealthUnlocked

Rebecca Bechhold, MD, discusses the joint role patients and doctors have in keeping the patient cancer free after treatment. I see this as equally relevant to...

Survivorship Is Not a Passive Sport

Rebecca Bechhold, MD, discusses the joint role patients and doctors have in keep...

AussieNeil

Administrator•11 years ago

I have a wart and my dr refuses to remove it and it's catching on everything! It's very painful what can I do for it?

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What can I do for a wart that catches on everything?

I have a wart and my dr refuses to remove it and it's catching on everything! It...

Sassy_mommy

•11 years ago

Can we take renewed hope from this 'miraculous' result of Brentuximab Vedotin?...

Promising story today! Certainly cheered me.

Can we take renewed hope from this 'miraculous' result of Brentuximab Vedotin?.....

Newdawn

Administrator•11 years ago

no treatment for cll only 8 weekly checks at hospital w&w .Had 2 ct scans 1st one revealed lung nodules 2nd one revealed one nodule growing and another in my...

buzzybab diagnosed march 13 with CLL

no treatment for cll only 8 weekly checks at hospital w&w .Had 2 ct scans 1st on...

buzzybab

•11 years ago

6 Replies

Latest update on ABT-199 an interview of Dr John Seymour Australian lead investigator by Patient Power

"Dr. John Seymour, a CLL researcher, shares an update about an ongoing trial using the Bcl-2 inhibitor ABT-199, which received a dose modification following...

"Dr. John Seymour, a CLL researcher, shares an update about an ongoing trial usi...

HAIRBEAR_UK

Founder Admin•11 years ago

After two months in hospital and neutrophils at zero my consultant put me on Ofatumumab . My neutrophils immediately returned. I am at home now after five lots...

Has anyone any experience of Ofatumumab ?

After two months in hospital and neutrophils at zero my consultant put me on Ofa...

isambard

•11 years ago

6 Replies

What's the deal with CRP

for my next set of bloods, the haematologist has asked for CRP, which I am assuming is C-Reactive Protein as a tumour marker. Has anyone any info on this? I'm...

for my next set of bloods, the haematologist has asked for CRP, which I am assum...

djgolding

•11 years ago

6 Replies

1st Rituximab went like a dream

No reaction nor effects on the day. Last month's F&C brought WCC down from ~200 to ~7 so it was looking good and no need for an overnighter in hospital. Sat...

No reaction nor effects on the day. Last month's F&C brought WCC down from ~200 ...

djgolding

•11 years ago

19 Replies

ALC (absolute lymphocyte count)

Hi everyone, Sorry to sound dumb here but I am looking at a copy of my husband's blood work and just need a bit of guidance. He was diagnosed last June (at...

Hi everyone, Sorry to sound dumb here but I am looking at a copy of my husband's...

shellsb

•11 years ago

10 Replies

i am my left shoulder back, left arm and left forarm is paining at regular intervals. kindly let me what is the cause of the problem?

how to overcome out of the pain. the pain is not continuous. it comes and goes after some time, some times after hours

how to overcome out of the pain. the pain is not continuous. it comes and goes a...

sushilcelin

•11 years ago

diagnosed in 2001 aged 43 with cll, been on wait and watch with 6 month bloods and consults. Now I'm heading for treatment as I have extensive node...

new to group

diagnosed in 2001 aged 43 with cll, been on wait and watch with 6 month bloods a...

fisaunders

•11 years ago

my 88yr old mother was diagnosed 3/2/2014 early stage cll.being sent for an ultrasound scan(abdomen).her blood readings are wcc14.2/ lymphocytes6.3 with...

watch and wait

my 88yr old mother was diagnosed 3/2/2014 early stage cll.being sent for an ultr...

chrismac

•11 years ago

I just posted the second part of my interview with Jan Geissler and Giora Sharf on adherence in CML. See: http://bkoffman.blogspot.com This is going to a...

Adherence, the High Cost of Cancer Medications, and the Importance of Clear Communication

I just posted the second part of my interview with Jan Geissler and Giora Sharf ...

bkoffman

CLL CURE Hero•11 years ago

Change Day, on 3rd March, is an opportunity for everyone who cares about the NHS to help it improve from within - by pledging to make a positive......

NHS Change Day - Make a difference & help NHS improve from within

Change Day, on 3rd March, is an opportunity for everyone who cares about the NHS...

HAIRBEAR_UK

Founder Admin•11 years ago

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Health Check: does alcohol cause cancer?

Ian Olver, the Clinical Professor Oncology at Cancer Council Australia examines the cancer risk associated with drinking alcohol in his article published in...

Ian Olver, the Clinical Professor Oncology at Cancer Council Australia examines ...

AussieNeil

Administrator•11 years ago

My UK friend Nick has reminded me that the US FDA approval of ibrutinib is a nice thing there but has a long, long way to go to be accessible outside of a...

Yes, I know Ibrutinib is mostly a US story

My UK friend Nick has reminded me that the US FDA approval of ibrutinib is a nic...

andrewschorr

•11 years ago

I had CLL diagnosed two years ago. It has remained at a low level so far. I also suffer from IBS, and probiotics as well as active yogourts are recomended for...

Probiotics for CLL patients

I had CLL diagnosed two years ago. It has remained at a low level so far. I also...

wolflein

•11 years ago

Does anybody know if Ibrutnib threatment "cures" the need for IVIG or will the patient still have a compromised immunesystem?

Does Ibrutnib remove the need for IVIG?

Does anybody know if Ibrutnib threatment "cures" the need for IVIG or will the p...

Damms

•11 years ago

Hi friends, Ibrutinib got a pretty clean approval from the FDA today for CLL. Anyone who had at least one prior therapy is a candidate for the drug. For...

Ibrutinib Approved in the USA for CLL Patient after at least one prior therapy

Hi friends, Ibrutinib got a pretty clean approval from the FDA today for CLL. ...

bkoffman

CLL CURE Hero•11 years ago

3 Replies

Patients' Willingness to Share Health Data Online

A recent survey of PatientsLikeMe members in the US reveals patients' willingness to share their health data online. See the post at...

A recent survey of PatientsLikeMe members in the US reveals patients' willingnes...

gotCLL

•11 years ago

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Ibrutinib dosing rationale for CLL at 420mg per day

The link provided below is a full research paper from the respected "New England Journal of Medicine" July 2013, lead author J.C. Byrd et al. but the "et al."...

The link provided below is a full research paper from the respected "New England...

ThreeWs

•11 years ago

Has anyone taken ibrutinib for cll p17 deletion.If so how did it go for you?

Macyjo14

•11 years ago

13 Replies

I'm looking for resources re: when/if to stop FCR, what information should the patient discuss with the medical provider? Thank you!

LAinNYC

•11 years ago

Hi I was diagnosed with T cell lymphocytic leukaemia this year after having survived breast cancer last year. Although I have a positive outlook as am only at...

Searching for information

Hi I was diagnosed with T cell lymphocytic leukaemia this year after having surv...

Babs58

•11 years ago

Does anyone have any information about T cell pro lymphocytic leukaemia?

Babs58

•11 years ago

My CLL, newly diagnosed, is becoming aggressive. The consultant has said that chemotherapy is the next step if a blood test in a month remains concerning. He...

Is chemo delivered by pills or infusion?

My CLL, newly diagnosed, is becoming aggressive. The consultant has said that ch...

Graham2222

•11 years ago

8 Replies

Does anyone else here have a plasmacytoma too

I was diagnosed with CLL 4/2010. right now 2/2014 my White count is only at 40 and the rest of my blood levels are all good. In 1/2011 the doctor thought i...

I was diagnosed with CLL 4/2010. right now 2/2014 my White count is only at 40 ...

breezy_91766

•11 years ago

Friends, I just posted an interview from ASH 2013 from 2 amazing CML patient advocates on the importance of taking our oral medication. I will revisiting...

“Drugs don’t work in patients who don’t take them.” – C. Everett Koop

Friends, I just posted an interview from ASH 2013 from 2 amazing CML patient a...

bkoffman

CLL CURE Hero•11 years ago