Posts - CLL Support | HealthUnlocked

CLL Support

22,500 members • 38,645 posts

All posts for October 2018

cll w/ a twist - Stem cell

okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found...

okay - been awhile - 8 years of cll without any great remission so i went to MSK...

•5 years ago

Finally had to give in

Hi All. I've managed to carry on working throughout the 6 years and 6 months since diagnosis,even managed ro return to work full time after my first round...

Hi All. I've managed to carry on working throughout the 6 years and 6 months sin...

•5 years ago

Immune exhaustion in CLL and boosting antibody response with Imbruvica (ibrutinib)

https://youtu.be/01N07hZOWu0 https://youtu.be/Tsai_VsWEO8 ERIC, Barcelona, 2018

https://youtu.be/01N07hZOWu0 https://youtu.be/Tsai_VsWEO8 ERIC, Barcelona, 201...

Top Poster CURE Hero•5 years ago

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Venetoclax-antibody combinations to come in CLL and DUO results

https://youtu.be/6Du-jVZfRuQ https://youtu.be/dmBI0ERuzT8 https://youtu.be/m_hir1rIKJ0

https://youtu.be/6Du-jVZfRuQ https://youtu.be/dmBI0ERuzT8 https://youtu.be/m_hi...

Top Poster CURE Hero•5 years ago

Prevnar 13 pneumonia vaccine

Received my shot on Monday...no side effects...a blessing...never want to get pneumonia again.Hope it works.

Received my shot on Monday...no side effects...a blessing...never want to get pn...

•5 years ago

What do i do?

What if you have been on imbruvika for one full year and all of a sudden your insurance wont pay for it because it costs 11,000 dollars a month. I have full...

What if you have been on imbruvika for one full year and all of a sudden your in...

•5 years ago

Got blood results back from first appointment with hematologist/oncologist

Got my blood results back from hematologist/oncologists ... my wbc 16.2 previous was 17.5 the lymphocytes 11.3 down from 12.3....all other blood stuff...

Got my blood results back from hematologist/oncologists ... my wbc 16.2 previous...

•5 years ago

Is short treatment an option?

Hello I have a simple but tricky question My wife has been diagnosed with Cll 4 years ago and her nodes around the neck have gone gradually from nothing to...

Hello I have a simple but tricky question My wife has been diagnosed with Cll 4...

•5 years ago

Update - I am 6 month clear in Blood and nodes via MRI on Captivate Imbruvica plus Venetoclax trial.

Hello, I am pleased to report I am still MRD negative in the blood after over 6 months. My recent MRI scans show my nodes are still normal. I am most likely...

Hello, I am pleased to report I am still MRD negative in the blood after over 6 ...

•5 years ago

Blood in Urine....What Next?

Today went to gynecologist for check on a Pap smear that came back abnormal and they did a urine test and found through dip stick that I have quite a lot of...

Today went to gynecologist for check on a Pap smear that came back abnormal and ...

•5 years ago

Muscle pains

Is anyone having random muscle pain problems? I was diagnosed in 2015 but have not had to be treated so far. My WBC count went down recently and my oncologist...

Is anyone having random muscle pain problems? I was diagnosed in 2015 but have n...

•5 years ago

Carer's Rights day

Hi all, It is Carer's Rights Day on the 30th of November and we at Leukaemia Care would love to hear from anyone caring for someone with leukaemia. You...

Hi all, It is Carer's Rights Day on the 30th of November and we at Leukaemia Ca...

KnitEatCrochetRepeat

•5 years ago

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Flu season

Hi, my husband has a fever, I’m not sure if it’s the cold or a flu. How have you managed your flu’s and seasonal cold?

Hi, my husband has a fever, I’m not sure if it’s the cold or a flu. How have you...

•5 years ago

Fatigue

Hi been on FLAIR trial for a month lymph nodes gone so positive news ,but struggling with Fatigue managing to go to work in day but knackered by mid afternoon...

Hi been on FLAIR trial for a month lymph nodes gone so positive news ,but strugg...

•5 years ago

Got good news

I went back for my 3 month check up well I got good news my doctor said everything looked good she said by looking at me she couldn’t tell that anything was...

I went back for my 3 month check up well I got good news my doctor said everythi...

•5 years ago

Advice Needed

Hello, I am back after a while. My husband has completed 5 cycles now and the 6th was scheduled for last Monday. However the blood counts have not fully...

Hello, I am back after a while. My husband has completed 5 cycles now and the 6t...

•5 years ago

Any advice about erratic heart beat while on Ibrutinib?

I have been on Imbruvica for a couple of years, having constant irregular heart beats (AFIB) all day long and it is getting worse. Doctor wants to give me Beta...

I have been on Imbruvica for a couple of years, having constant irregular heart ...

•5 years ago

Ibrutinib and arm pain

Anyone else having to pain in forearm and upper arm? Best way to explain is that it feels like I've been hanging from just my arm. I have it only in my right...

Anyone else having to pain in forearm and upper arm? Best way to explain is that...

•5 years ago

Pneumonia vaccine reaction

Please excuse me for troubling you. I have thought long and hard before reaching to a post. But I believe it’s important you are informed of the possible...

Please excuse me for troubling you. I have thought long and hard before reaching...

•5 years ago

Lisa Minkove has won the CLL HEROES Award sponsored by Cure Now.

This is a cross post copied from CLLForum.com and I hope the original author JCreager does not object to my reposting hers here- Len In Loving Memory > Lisa...

This is a cross post copied from CLLForum.com and I hope the original author JCr...

Volunteer•5 years ago

CLL genetics and research

Has any doctor linked CLL to any genetic variant? Does anyone know where they are doing the most research on CLL in or out if the US? Thank you!

Has any doctor linked CLL to any genetic variant? Does anyone know where they ar...

•5 years ago

Octagam reaction???

Hello here i’m again... looks like i’m having a type of reaction in my body, started in the legs and going up into the all body..... i’m still ibrutinib and...

Hello here i’m again... looks like i’m having a type of reaction in my body, sta...

•5 years ago

Stand up to cancer channel 4 in uk

Great to have programme once a year fundraising for all types of cancer including cell Thought it went well one story to the next and no big name trying to be...

Great to have programme once a year fundraising for all types of cancer includin...

•5 years ago

A set-back

Hi all: Got the news last Wednesday - The Imbruvica is not working as well as hoped. The conversation went into "what's next", and the answer was - "Well you...

Hi all: Got the news last Wednesday - The Imbruvica is not working as well as ho...

•5 years ago

Diagnosed at 30

Yes I was diagnosed at 30, I went six years before I need a treatment . I’ve developed thrombocytopenia which is self-destruction of the platelets . I did...

Yes I was diagnosed at 30, I went six years before I need a treatment . I’ve ...

•5 years ago

Pneumonia vaccine reaction

Please excuse me for troubling you. I have thought long and hard before reaching to a post. But I believe it’s important you are informed of the possible...

Please excuse me for troubling you. I have thought long and hard before reaching...

•5 years ago

Is CLL specialist the best care from the start?

I am going to Dana Farber in Boston for a second opionion from a highly rated CLL Dr.I'm only stage 0 at this point.Will I get better care going forward if I...

I am going to Dana Farber in Boston for a second opionion from a highly rated CL...

•5 years ago

Prevnar 13 pneumonia shot

Anyone receive this shot and have side effects and how long does it protect you for?I am getting it on Monday as I jut got over pneumonia and my dr advised...

Anyone receive this shot and have side effects and how long does it protect you ...

•5 years ago

Ibrutinib and Hematomas

Has anyone had issues with developing hematomas while on Ibrutinib? I started the med on August 28th and almost immediately started bruising from even the...

Has anyone had issues with developing hematomas while on Ibrutinib? I started ...

•5 years ago

Walking pneumonia

Do you commonly get walking pneumonia at stage 0.?

Do you commonly get walking pneumonia at stage 0.?

•5 years ago

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