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All posts for August 2018

Week from HELL!

Went to FL this past Monday to do depositions for my divorce. Was already feeling down and weak with no appetite! After depos on Tuesday morning; I was just...

Went to FL this past Monday to do depositions for my divorce. Was already feeli...

Mimi4times

•6 years ago

49 Replies

Alternatives to Ibrutinib ???

Here is an interesting article about the expanding field of BTK inhibitors that are in the pipeline. Some look very promising as superior alternatives to...

Here is an interesting article about the expanding field of BTK inhibitors that ...

Indolent

•6 years ago

35 Replies

Prevent osteoporosis Talk to your doctor about getting a bone mass measurement (bone density). If you’re at risk

Prevent osteoporosis Many people don’t know they have osteoporosis until they break a bone. Did you know Medicare can help you prevent or detect osteoporosis...

Prevent osteoporosis Many people don’t know they have osteoporosis until they br...

lankisterguy

Volunteer•6 years ago

2 Replies

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Vaccine Recommendations for CLL Patient Power Video- August 16, 2018

Should chronic lymphocytic leukemia (CLL) patients get preventative vaccinations? A panel of experts including Dr. Michael Keating, from The University of...

Should chronic lymphocytic leukemia (CLL) patients get preventative vaccinations...

lankisterguy

Volunteer•6 years ago

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Understanding CLL: What You Should Know About Treatment, Genetic Testing and Research September 22, 2018

Have you signed up for the Patient Power September 22nd CLL town meeting in Atlanta? You'll hear the latest treatment and research news from Emory and Ohio...

Have you signed up for the Patient Power September 22nd CLL town meeting in Atl...

lankisterguy

Volunteer•6 years ago

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Ask the CLL Expert - LIVE - September 27, 2018 at 12 PM Pacific Time (2 PM CT, 3 PM ET) with leading CLL specialist Dr. Jeff Sharman

Ask the CLL Expert - LIVE September 27, 2018 https://www.patientpower.info/event/ask-the-cll-expert-live Do you have a burning question for an expert in...

Ask the CLL Expert - LIVE September 27, 2018 https://www.patientpower.info/ev...

lankisterguy

Volunteer•6 years ago

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Effect of Ibrutinib on Hormones

I am noticing hormonal imbalance in body after use of Ibnutrib for ard 1 year or so, in terms of some times higher testrones and after 4-5 days higher...

I am noticing hormonal imbalance in body after use of Ibnutrib for ard 1 year or...

Anilbhard

•6 years ago

5 Replies

No longer a treatment virgin

downed my first three 140 ibrutinib capsules Wednesday evening after 16 and a half years of wait and watch. The length of my treatment virginity rivaled the...

downed my first three 140 ibrutinib capsules Wednesday evening after 16 and a ha...

johnl

•6 years ago

6 Replies

Imbruvica

Can I take a pain medication while on Imbruvica?

smife

•6 years ago

11 Replies

Meds for afib

Which meds did your dr prescribe for you if you have afib..I may have to go on some.Replies please,

Which meds did your dr prescribe for you if you have afib..I may have to go on s...

tlcladygiraffe

•6 years ago

5 Replies

Just a quick question re fcr

Starting FCR next week I presume I will have a picc line fitted? Just one of the many questions I forgot to ask yesterday at my appointment

Starting FCR next week I presume I will have a picc line fitted? Just one of the...

dandelup

•6 years ago

36 Replies

Recent SLL/CLL Patient Question

Hello. I found out I have SLL/CLL earlier this year at 31. I had Rituxan treatment shortly after since I have neutropenia I can't seem to shake. I will save...

Hello. I found out I have SLL/CLL earlier this year at 31. I had Rituxan treatme...

DriedSeaweed

•6 years ago

11 Replies

Aunt with CLL and bone marrow infiltration

My aunt was just diagnosed with CLL with bone marrow infiltration. I work for a lung cancer foundation so I am very familiar with solid tumor cancers, but CLL...

My aunt was just diagnosed with CLL with bone marrow infiltration. I work for a...

dleducALC

•6 years ago

4 Replies

Light the Night Australia..Walk Locations

The Australian Leukaemia Foundation includes these special fund raising events between September and November annually. The different lantern colours have...

The Australian Leukaemia Foundation includes these special fund raising events ...

AussieNeil

Administrator•6 years ago

3 Replies

Great article on alternative medicine clinics

Today I read a great article on Medscape, a respected and reputable source for accurate, evidence based medical research. I wanted to share the link with all...

Today I read a great article on Medscape, a respected and reputable source for a...

Psalm4610

•6 years ago

9 Replies

Melanoma linked with CLL, close monitoring recommended - worth a read on sciencedaily.com

While studying a large group of individuals with chronic lymphocytic leukemia (CLL), a research team made an important discovery: these patients had a sizable...

While studying a large group of individuals with chronic lymphocytic leukemia (C...

Steffi50

•6 years ago

2 Replies

Big day update

Now back from hospital I got selected for fcr which I was hoping to avoid, but going to approach it in a positive manor try and keep infection free and look...

Now back from hospital I got selected for fcr which I was hoping to avoid, but g...

dandelup

•6 years ago

26 Replies

Big day for me

Today is the day I discover which arm of the Flair trial I am going on, and next week I start whatever treatment I have been selected for, slightly...

Today is the day I discover which arm of the Flair trial I am going on, and next...

dandelup

•6 years ago

14 Replies

Fundraising run for CLLSA

One of our supporters, Hazel Everett, is running the New Forests 10k to raise funds on behalf of her mother, who is a CLL patient and was helped by CLLSA. The...

One of our supporters, Hazel Everett, is running the New Forests 10k to raise fu...

pkguk2

Partner•6 years ago

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Ibutrimib and medical canabis . Neck pain

Please, thank you for advise and help.¿ Ibutrimib is compatible with medical canabis?. A hard neck pain is my problem, The most important, coincidently with...

Please, thank you for advise and help.¿ Ibutrimib is compatible with medical can...

3665jose

•6 years ago

3 Replies

Some questions from a Newbie in Limbo

Diagnosed 2 weeks ago, waiting in Chromosome analysis for my sub type, just had a few questions for fellow sufferers. 1. Ive just had night sweats for the...

Diagnosed 2 weeks ago, waiting in Chromosome analysis for my sub type, just had ...

fugazi

•6 years ago

8 Replies

Scare.

Did chemo in Oct. Done in Feb. Go every other month for the shot will do for the next 2 yrs. OK,,, I was told that people that have cll get a second cancer.....

Did chemo in Oct. Done in Feb. Go every other month for the shot will do for the...

Judiahuntee

•6 years ago

8 Replies

Swimming, joy and sadness and MRD negativity

Hi, I got the great news that I am still MRD- more than 5 months post CAR-T For my reflections on this and the rollercoaster ride that is CLL and more details...

Hi, I got the great news that I am still MRD- more than 5 months post CAR-T For ...

bkoffman

CLL CURE Hero•6 years ago

11 Replies

New member from Perth - Any recommendations on a CLL Specialist?

Hi all Firstly, I want to thank all of for sharing your experience and stories through this forum. I have been in the shadows reading and learning so much...

Hi all Firstly, I want to thank all of for sharing your experience and stories ...

jewels777

•6 years ago

8 Replies

What do you all think?

Why? I am a white male 86 yrs old, and in questionably good health. I have been on Imbruvica for CLL for three years and stopped taking it on 5/28/2018 on...

Why? I am a white male 86 yrs old, and in questionably good health. I have be...

578999lme

•6 years ago

18 Replies

Zanubrutinib / BGB-3111

Hello everybody, I should go for the first line treatment. My choices are Ibrutinib or try to get into Clinical Trial with BGB-3111/ Zanubrutinib, new BTKi...

Hello everybody, I should go for the first line treatment. My choices are Ibruti...

VLAD11

•6 years ago

11 Replies

Results of flow

What does this mean regarding cll? PATHOLOGICAL DIAGNOSIS A. Peripheral blood, flow only: - CD5+, CD23 + (subset) B-cell lymphoproliferative disorder, see......

What does this mean regarding cll? PATHOLOGICAL DIAGNOSIS A. Peripheral blood, f...

Pat351v

•6 years ago

6 Replies

Pins and needles

I have been taking Ibrutinib for my CLL for the past 18 months. One month ago I started experiencing severe pins and needles all over my body, including my...

I have been taking Ibrutinib for my CLL for the past 18 months. One month ago I ...

Finzi

•6 years ago

10 Replies

Stop ibrutinib

Hola. Tuve que suspender Ibrutinib durante 15 dias. Y gran desilucion: aumente mis globulos blancos de 9.300 que tenia hace 1 mes a 19.900 y me aumentaron...

Hola. Tuve que suspender Ibrutinib durante 15 dias. Y gran desilucion: aumente ...

Bixilon

•6 years ago

2 Replies

UK CLL Trials Portfolio as of July 2018

An updated list of UK CLL trials as of Jul 2018 can be found here https://www.cllsupport.org.uk/article/uk-cll-trials-portfolio-july-2018-0

An updated list of UK CLL trials as of Jul 2018 can be found here https://www....

Myrddin

•6 years ago

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Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2018

Week from HELL!

Alternatives to Ibrutinib ???

Prevent osteoporosis Talk to your doctor about getting a bone mass measurement (bone density). If you’re at risk

Vaccine Recommendations for CLL Patient Power Video- August 16, 2018

Understanding CLL: What You Should Know About Treatment, Genetic Testing and Research September 22, 2018

Ask the CLL Expert - LIVE - September 27, 2018 at 12 PM Pacific Time (2 PM CT, 3 PM ET) with leading CLL specialist Dr. Jeff Sharman

Effect of Ibrutinib on Hormones

No longer a treatment virgin

Imbruvica

Meds for afib

Just a quick question re fcr

Recent SLL/CLL Patient Question

Aunt with CLL and bone marrow infiltration

Light the Night Australia..Walk Locations

Great article on alternative medicine clinics

Melanoma linked with CLL, close monitoring recommended - worth a read on sciencedaily.com

Big day update

Big day for me

Fundraising run for CLLSA

Ibutrimib and medical canabis . Neck pain

Some questions from a Newbie in Limbo

Scare.

Swimming, joy and sadness and MRD negativity

New member from Perth - Any recommendations on a CLL Specialist?

What do you all think?

Zanubrutinib / BGB-3111

Results of flow

Pins and needles

Stop ibrutinib

UK CLL Trials Portfolio as of July 2018

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