Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for April 2017

CLL/SLL

Hi got Dx Feb 2017 with CLL/ Sll I know they say it the same , but my oncologist said I had both : very confused, Zap 70 positive, Cd 38 positive and...

Hi got Dx Feb 2017 with CLL/ Sll I know they say it the same , but my oncologis...

PNall

•7 years ago

10 Replies

WOW, what can I say

Good afternoon everyone. Well for the first time since January readings are all in the blue instead of red. HB ........ 152. (Was 95...

Good afternoon everyone. Well for the first time since January readings are all ...

Susiecarer

•7 years ago

7 Replies

FCR...the "gold standard" for CLL

Well, after all kinds of advice and doing some serious research, I decided to go to OSU James Cancer Center for treatment. Dr. Byrd will give me FCR...

Well, after all kinds of advice and doing some serious research, I decided to go...

queencalabrese

•7 years ago

36 Replies

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bilirubin increase with imbruvica

I have been on imbruvica for 7 months for cll. I have experienced the usual side effects but minimal. My question is the following - My bilirubin has moved...

I have been on imbruvica for 7 months for cll. I have experienced the usual si...

578999lme

•7 years ago

3 Replies

New CCL diagnosis

Diagnosis in Feb. Having neuro complications. Started on Ibrutinib April 7. Started on Rifixam infusion yesterday. So far the meds are well tolerated.

Diagnosis in Feb. Having neuro complications. Started on Ibrutinib April 7. Star...

WisconsinRalph

•7 years ago

4 Replies

What else can be done?

Ok I just survived a bout of pneumonia again.my hospital doctor asked my hematologist what could be done for me he said nothing that I was at end of my disease...

Ok I just survived a bout of pneumonia again.my hospital doctor asked my hematol...

greygirl

•7 years ago

24 Replies

Ibrutinib and severe foot cramps

Hi started treatment on Wednesday and after day 3 woke with very painfull right foot could not even walk to the bathroom and bit better this morning but still...

Hi started treatment on Wednesday and after day 3 woke with very painfull right ...

cartwheels

•7 years ago

31 Replies

Venetoclax - Day 25 - 200mg

It's been a very rough two weeks for mama, but thought I'd post an update for others on this journey.. When I last posted mum continued to suffer from frequent...

It's been a very rough two weeks for mama, but thought I'd post an update for ot...

Natali

•7 years ago

6 Replies

FDA Cracks Down on Unapproved Direct-to-Consumer Cancer ‘Cures’

The US Food and Drug Administration (FDA) has sent warning letters to 14 companies marketing dozens of unapproved “miracle cure” products online with...

The US Food and Drug Administration (FDA) has sent warning letters to 14 compani...

AussieNeil

Administrator•7 years ago

1 Reply

Arthritis not imbruvica

I have had knee problems for quite sometime now. Last year I had a shot of cortisone which really helped when I developed a baker's cyst. Since my ankles also...

I have had knee problems for quite sometime now. Last year I had a shot of corti...

Mcpill

•7 years ago

9 Replies

TTI 621 trial

Refractory, 3rd time after 10 mos ibrutinib. Now enrolled in clinical trial w Trillium's TTI 621, expansion phase, no rituxan. My lymph nodes after week three...

Refractory, 3rd time after 10 mos ibrutinib. Now enrolled in clinical trial w Tr...

MelindaBates

•7 years ago

11 Replies

Need encouragement for love

My husband was diagnosed just 4 months ago with sll/cll he's on W&W. He has felt really good physically, but emotionally lately he has really been struggling....

My husband was diagnosed just 4 months ago with sll/cll he's on W&W. He has felt...

school45

•7 years ago

19 Replies

Bloodwise Patient Need Survey

Bloodwise have asked for help with their Patient Need Research program to help them ensure all blood cancer patients have access to services that help them to...

Bloodwise have asked for help with their Patient Need Research program to help t...

Myrddin

•7 years ago

9 Replies

Steroids in CLL

Hi I've posted the first of 3 planned articles about steroids. This one a summary about what steroids are and how they are used in CLL. You can access it...

Hi I've posted the first of 3 planned articles about steroids. This one a summa...

bkoffman

CLL CURE Hero•7 years ago

2 Replies

11q ATM

11q deletion ATM loss is considerably higher in males than females https://pdfs.semanticscholar.org/63af/b81d29277a26057dada17f60131d046a2bff.pdf

11q deletion ATM loss is considerably higher in males than females https://pdf...

Hidden

•7 years ago

2 Replies

CLL Ireland website

Hi all , just wanted to post about our new website for CLL patients in Ireland. Also my wife Jan's story is in the Living with CLL section. We also have our...

Hi all , just wanted to post about our new website for CLL patients in Ireland. ...

Irishcll

•7 years ago

8 Replies

9 yearas with watch and wait. 65 yers old. 22,000whc

Still hoping for a cure. "Funman"

Funman

•7 years ago

14 Replies

The Economics of Healthcare- Blood Cancer

This popped up on Twitter as a sponsored link. It's worth reading...

otonal

•7 years ago

3 Replies

PAIN IN LEFT SIDE - SPLEEN?

Week 4 in Imbruvica. All other lymph nodes have shrunk, but anyone have any suggestions (other than definitely not over eating - no room down there) about how...

Week 4 in Imbruvica. All other lymph nodes have shrunk, but anyone have any sug...

duffymcgrif

•7 years ago

27 Replies

Operation over

Hi, well just received a phone call from the surgeon, op was 6.5 hours long in the end. As he said it wasn't a walk in the park with this op. All went well,...

Hi, well just received a phone call from the surgeon, op was 6.5 hours long in t...

Susiecarer

•7 years ago

7 Replies

It's operation day.....

Hi Everyone, Sat here waiting for call from surgeon regarding hubbys bowel Cancer op. He went down to theatre at 12 noon and surgeon did say it could be 5-6...

Hi Everyone, Sat here waiting for call from surgeon regarding hubbys bowel Canc...

Susiecarer

•7 years ago

5 Replies

Bloodwise would like your experience of Ventoclax for treatment assessment for NHS Scotland

The Scottish Medicines Consortium (SMC) is reviewing the chronic lymphocytic leukaemia (CLL) drug venetoclax – you might also know it’s brand name, Venclyxto....

The Scottish Medicines Consortium (SMC) is reviewing the chronic lymphocytic leu...

Myrddin

•7 years ago

3 Replies

Four and a half months post chemo and neutropenia causes a little trip to hospital- why?

HI there! Having finished chem at the end of November , I have felt that things are getting back to some sort of normality. I have been feeling well, gone...

HI there! Having finished chem at the end of November , I have felt that things...

Bethan49

•7 years ago

22 Replies

Science or Snake Oil: can turmeric really shrink tumours, reduce pain and kill bacteria?

'In the literature, curcumin (active ingredient in turmeric - Neil) is reported to be an antioxidant that protects the body against damage from...

'In the literature, curcumin (active ingredient in turmeric - Neil) is reported...

AussieNeil

Administrator•7 years ago

7 Replies

But You Don't Look Sick

If any of you know about this, sorry for the repeat, but I Just found the term "Spoonies" in one of my friend's Facebook posts. The term comes from having an...

If any of you know about this, sorry for the repeat, but I Just found the term "...

BeckyLUSA

•7 years ago

6 Replies

Newly diagnosed Cll B cell

Hi I was recently diagnosed with Cll B cell I have deletion of the Tp53 and 17p13.1 I am very confused very uncertain and all the info I'm reading I don't...

Hi I was recently diagnosed with Cll B cell I have deletion of the Tp53 and 17p1...

StacyA

•7 years ago

34 Replies

Flu shots!

I just had a flu shot on Wednesday last week and by Friday I have now got a dreadful flu! Gad I wish I never had the damn shot now!... I don't think they work...

I just had a flu shot on Wednesday last week and by Friday I have now got a drea...

Heidiypi1

•7 years ago

40 Replies

Advice please

Hi all I've just had a scary incident and need some advice please. Finished my chemo tablets last Saturday so now just taking allopurinol and aclivicar daily....

Hi all I've just had a scary incident and need some advice please. Finished my c...

sallyplest

•7 years ago

16 Replies

Ibrutinib Resistance

Hi, I've posted a summary of a new article from the International Journal Cancer Therapy and Oncology about ibrutinib resistance in CLL in the Beyond the...

Hi, I've posted a summary of a new article from the International Journal Cancer...

bkoffman

CLL CURE Hero•7 years ago

4 Replies

New CLL Patient

Hello All, my name is Sam and I was diagnosed with the beginning stages of CLL just over a year ago. I am 66 years old and I am in the commercial finance and...

Hello All, my name is Sam and I was diagnosed with the beginning stages of CLL j...

CLL12345

•7 years ago

24 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2017

CLL/SLL

WOW, what can I say

FCR...the "gold standard" for CLL

bilirubin increase with imbruvica

New CCL diagnosis

What else can be done?

Ibrutinib and severe foot cramps

Venetoclax - Day 25 - 200mg

FDA Cracks Down on Unapproved Direct-to-Consumer Cancer ‘Cures’

Arthritis not imbruvica

TTI 621 trial

Need encouragement for love

Bloodwise Patient Need Survey

Steroids in CLL

11q ATM

CLL Ireland website

9 yearas with watch and wait. 65 yers old. 22,000whc

The Economics of Healthcare- Blood Cancer

PAIN IN LEFT SIDE - SPLEEN?

Operation over

It's operation day.....

Bloodwise would like your experience of Ventoclax for treatment assessment for NHS Scotland

Four and a half months post chemo and neutropenia causes a little trip to hospital- why?

Science or Snake Oil: can turmeric really shrink tumours, reduce pain and kill bacteria?

But You Don't Look Sick

Newly diagnosed Cll B cell

Flu shots!

Advice please

Ibrutinib Resistance

New CLL Patient

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