Posts - CLL Support | HealthUnlocked

CLL Support

22,514 members • 38,671 posts

All posts for June 2019

CLL WARS: New Hope

Today’s check up: WBC 13.08 (prev. 17.04). ALC 9.75 (prev. 13.35). Maybe the force being with me... 💪🏻🙏😉

Today’s check up: WBC 13.08 (prev. 17.04). ALC 9.75 (prev. 13.35). Maybe the for...

tomster

•5 years ago

4 Replies

Living Beyond Lymphoma: Mindfulness Teleconference Wednesday, July 31, 2019 1:30 PM -- 2:30 PM ET

Teleconference - Living Beyond Lymphoma: Mindfulness...

lankisterguy

Volunteer•5 years ago

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Muscle Spasms

Does anyone suffer from muscle spasms? And if so how do you handle them.

Jimargie

•5 years ago

24 Replies

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Had your flu and pneumonia vaccinations? Whoopi Goldberg's Pneumonia Nightmare - Talk show host recounts near-fatal sepsis infection

I don't post about celebrities as a rule - they get more than enough media attention, but this article from Medpage Today caught my attention because of the...

I don't post about celebrities as a rule - they get more than enough media atten...

AussieNeil

Administrator•5 years ago

6 Replies

Not receiving daily post

Have not been receiving my daily updates from this forum which I read with great interest each day. Something new happening with post or just my email server?...

Have not been receiving my daily updates from this forum which I read with great...

Osprey69

•5 years ago

2 Replies

Painful swollen lymph nodes in neck

I’m recently diagnosed during my last six month visit in early April. I’m 17 days into a 24 day out of the country trip, and got sick with head cold on first...

I’m recently diagnosed during my last six month visit in early April. I’m 17 da...

Wizzard1663

•5 years ago

6 Replies

URGENT UK grated cheese alert

You may have heard about the recent outbreak of Listeria in a UK hospital. This is separate to that but a specific brand of grated cheese sold in several UK...

You may have heard about the recent outbreak of Listeria in a UK hospital. This ...

AdrianUK

•5 years ago

7 Replies

Ibrutinib and permanent afib

I've had CLL since 2011, managed with Curcumin and Dandelion Root tea. Also have paramoxal afib. Started Ibrutinib April 15 this year as spleen was huge and...

I've had CLL since 2011, managed with Curcumin and Dandelion Root tea. Also have...

msporter

•5 years ago

9 Replies

42% of patients achieved U-MRD6 with venetoclax + obinutuzumab!

From German CLL14 study, presented at IMCL 2019. source: https://twitter.com/anthonymatomd/status/1141680121646145541 overview of UMRD-6:...

From German CLL14 study, presented at IMCL 2019. source: https://twitter.com/a...

avzuclav

•5 years ago

4 Replies

Time-to-first-treatment if you are Binet Stage A? Try the new International Prognostic Score (IPS-A from ICML 2019)

"We aimed at developing an IPS‐A for time‐to‐first‐treatment (TTFT) prognostication in stage A CLL patients. Conclusions: Among stage A CLL initially managed...

"We aimed at developing an IPS‐A for time‐to‐first‐treatment (TTFT) prognostica...

avzuclav

•5 years ago

18 Replies

Webinar: The Path to Personalized Medicine in Lymphoma and CLL Thursday, June 27, 2019 4:00 PM - 5:00 PM EDT by Lymphoma Canada

Webinar: The Path to Personalized Medicine in Lymphoma and CLL...

lankisterguy

Volunteer•5 years ago

3 Replies

There’s a whole world inside of you: a guide to microbiome research

Why doesn't one diet suit all of us? Why do some of us benefit from pre and probiotics, while they can be ineffective or even dangerous for others? Why do...

Why doesn't one diet suit all of us? Why do some of us benefit from pre and prob...

AussieNeil

Administrator•5 years ago

3 Replies

WHY night sweats?

so much has been written about night sweats, but do any of the experts know WHY they happen? I would love to hear from the professionals Thanks and have a cool...

so much has been written about night sweats, but do any of the experts know WHY ...

Safta

•5 years ago

10 Replies

CLL-ipi; is it accurate?????

https://www.mdcalc.com/international-prognostic-index-chronic-lymphocytic-leukemia-cll-ipi#why-use I just came across this index online. Have others seen it?...

https://www.mdcalc.com/international-prognostic-index-chronic-lymphocytic-leukem...

Sunfishjoy

•5 years ago

6 Replies

Chronic Lymphocytic Leukemia: USA Updates in Diagnosis and Testing

Over the past decade, diagnosis, testing, and prognostic stratification have substantially improved, leading to revisions in guidelines from both the...

Over the past decade, diagnosis, testing, and prognostic stratification have sub...

Jm954

Administrator•5 years ago

9 Replies

Petechiae rash on lower legs due to ibrutinib?

Morning everyone I am new to the group but have been actively reading and sometimes replying to posts. Thank you everyone for the informative discussions and...

Morning everyone I am new to the group but have been actively reading and someti...

jdolinger

•5 years ago

4 Replies

New Directions in CLL: A Review of 2019 Treatment Guideline Updates in USA

In December 2018, pivotal trial data were presented at the American Society of Hematology Annual Meeting that demonstrated promising results for the first-line...

In December 2018, pivotal trial data were presented at the American Society of H...

Jm954

Administrator•5 years ago

Be the first to reply

Moving to France

Has anyone got any experience with moving to France. My husband was diagnosed with CLL about 18ths ago. He is on the Flair trial taking Ibrutinib. It has...

Has anyone got any experience with moving to France. My husband was diagnosed wi...

Earthangel33

•5 years ago

9 Replies

CLL with rashes, swelling and itching.

Just wondering if others with CLL have problems with rashes and itching?

WinJ3

•5 years ago

17 Replies

Exposure to Glyphosate (Round Up)? Any one believe this could be a factor in developing Non Hodgkins Lymphoma?

In my 20s, 30s, 40s and early 50s, I used Round Up intermittently in my gardens as Round Up was my go to treatment for controlling weeds. In hindsight, not...

In my 20s, 30s, 40s and early 50s, I used Round Up intermittently in my gardens ...

MrsMaggoo

•5 years ago

57 Replies

Is neccesary to make a Bone marrow biopsy every year during the ibutrinib monotheraphy treatment?

My brother is not in a trial, and I Wonder if he needs to make a Bone Narrow biopsy this year? He he is on monotherapy imbruvica treatment since july 2018, i...

My brother is not in a trial, and I Wonder if he needs to make a Bone Narrow bi...

Cgr2018

•5 years ago

16 Replies

Understanding prognosticators early on

I've watched all the videos on Patient Power and Cll Society. I've read what I can. And now sifting through my initial blood test results is alarming me. Mind...

I've watched all the videos on Patient Power and Cll Society. I've read what I c...

Sunfishjoy

•5 years ago

16 Replies

Hii...is night sweat a danger sign!? When it should be considered an important issue? It sould be generalized?

Tnx for your response

Keyvanlvl

•5 years ago

6 Replies

Mutated or unmutated?

How do you know if you're mutated or unmutated? I had a BMB a few months ago and also FISH, flow cytometry, peripheral blood etc. but no mention of mutated or...

How do you know if you're mutated or unmutated? I had a BMB a few months ago and...

Larcons

•5 years ago

5 Replies

Move over MRD Negative and make way for uMRD - Undetectable Minimal Residual Disease

As Dr Brian Koffman mentioned here: https://healthunlocked.com/cllsupport/posts/141000734/eha part of his contribution to the European Hematology Association...

As Dr Brian Koffman mentioned here: https://healthunlocked.com/cllsupport/posts/...

AussieNeil

Administrator•5 years ago

22 Replies

EHA

Hi, It was great to meet with Aussie Neil and many other CLL advocates in Amsterdam for EHA where I lectured to an overflow room on CAR-T and also as part of a...

Hi, It was great to meet with Aussie Neil and many other CLL advocates in Amster...

bkoffman

CLL CURE Hero•5 years ago

1 Reply

Cll America posts

Hi. I’ve been posting on the cll America site. Do intl folks see these posts also? If not how do I post to both sites?

Hi. I’ve been posting on the cll America site. Do intl folks see these posts als...

Sunfishjoy

•5 years ago

4 Replies

CLL with diabetes and bells palsy

Hello, well I have had had CLL for four years,my white count cell has gone from 18-43 back to 18. A few months ago I came down with Bells Palsy and have...

Hello, well I have had had CLL for four years,my white count cell has gone from ...

blairzy

•5 years ago

7 Replies

Possible Risk of Fungal Infection with Ibrutinib

It's just one case, but probably worth keeping in mind if you develop the symptoms. "In conclusion, this case demonstrates that the risk of fungal infection...

It's just one case, but probably worth keeping in mind if you develop the sympto...

patagozon

•5 years ago

11 Replies

Curious to know the preferred first-line treatment for CLL in other countries

I live in the US, and my understanding is that Ibrutinib is increasingly the preferred first-line treatment for CLL in the US. But with so much research in...

I live in the US, and my understanding is that Ibrutinib is increasingly the pre...

CalumLMackay

•5 years ago

14 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2019

CLL WARS: New Hope

Living Beyond Lymphoma: Mindfulness Teleconference Wednesday, July 31, 2019 1:30 PM -- 2:30 PM ET

Muscle Spasms

Had your flu and pneumonia vaccinations? Whoopi Goldberg's Pneumonia Nightmare - Talk show host recounts near-fatal sepsis infection

Not receiving daily post

Painful swollen lymph nodes in neck

URGENT UK grated cheese alert

Ibrutinib and permanent afib

42% of patients achieved U-MRD6 with venetoclax + obinutuzumab!

Time-to-first-treatment if you are Binet Stage A? Try the new International Prognostic Score (IPS-A from ICML 2019)

Webinar: The Path to Personalized Medicine in Lymphoma and CLL Thursday, June 27, 2019 4:00 PM - 5:00 PM EDT by Lymphoma Canada

There’s a whole world inside of you: a guide to microbiome research

WHY night sweats?

CLL-ipi; is it accurate?????

Chronic Lymphocytic Leukemia: USA Updates in Diagnosis and Testing

Petechiae rash on lower legs due to ibrutinib?

New Directions in CLL: A Review of 2019 Treatment Guideline Updates in USA

Moving to France

CLL with rashes, swelling and itching.

Exposure to Glyphosate (Round Up)? Any one believe this could be a factor in developing Non Hodgkins Lymphoma?

Is neccesary to make a Bone marrow biopsy every year during the ibutrinib monotheraphy treatment?

Understanding prognosticators early on

Hii...is night sweat a danger sign!? When it should be considered an important issue? It sould be generalized?

Mutated or unmutated?

Move over MRD Negative and make way for uMRD - Undetectable Minimal Residual Disease

EHA

Cll America posts

CLL with diabetes and bells palsy

Possible Risk of Fungal Infection with Ibrutinib

Curious to know the preferred first-line treatment for CLL in other countries

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