Posts - CLL Support | HealthUnlocked

CLL Support

22,989 members • 39,473 posts

All posts for January 2023

What to do hmmmmm

Hi all, I have two options after progressing on IB after four years. A) LOXO 305 Trial (Bruin 321) Or B) Venetoclax and Rituximab Being 17p deleted I was...

Hi all, I have two options after progressing on IB after four years. A) LOXO 30...

steve_canada

•2 years ago

20 Replies

Calquence now Capsule

Why did they change from Capsule to tablet? Has anyone noticed a difference in side effects or potency?

Why did they change from Capsule to tablet? Has anyone noticed a difference in ...

Shepherd777

•2 years ago

3 Replies

covid the second time

I had covid while on holiday in Canada on Boxing Day and had paxlovid and then rebound and finally tested negative day 16. Now 23 still sound like I have a...

I had covid while on holiday in Canada on Boxing Day and had paxlovid and then ...

Qualicum

•2 years ago

21 Replies

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For the newly diagnosed.?

This saying does perhaps encapsulate how anyone should think about a new diagnosis. Nothing in life is to be feared, it is only to be understood....

This saying does perhaps encapsulate how anyone should think about a new diagnos...

Kwenda

•2 years ago

3 Replies

Does insurance cover medications for CLL?

Hi, does united healthcare insurance through the gob cover for CLL medications ? Or what health insurance are covering for CLL medications?

Hi, does united healthcare insurance through the gob cover for CLL medications...

Karate

•2 years ago

10 Replies

High Alkaline Phosphatase and knee/bone pain side effects with Venetoclax/Obinituzumab

Hi folks My question is about side effects with Venetoclax and Obinituzumab. I wonder if anyone out there has any insights. I'm 66, was diagnosed in July...

Hi folks My question is about side effects with Venetoclax and Obinituzumab. I...

DinosaurDad

•2 years ago

9 Replies

Interesting read from CLL Society - High-Titer Convalescent Plasma for an Immunocompromised Patient with Active COVID-19

https://cllsociety.org/2023/01/high-titer-covid-19-convalescent-plasma-as-a-treatment-option-for-those-who-are-immunocompromised-after-becoming-infected-with-co

https://cllsociety.org/2023/01/high-titer-covid-19-convalescent-plasma-as-a-trea...

Floydpup

•2 years ago

1 Reply

CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023

Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023...

Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with C...

lankisterguy

Volunteer•2 years ago

5 Replies

new to this and CLL

Hello everyone, I was diagnosed with CLL in October 2022 and my goodness what a shock that was!!! I have been having chemo since November and am eagerly...

Hello everyone, I was diagnosed with CLL in October 2022 and my goodness what a...

angelscent1

•2 years ago

14 Replies

Venetoclax availability

I have just read that Abbievie, the manufacturers of Venetoclax are pulling out of the NHS National pricing agreement, on the basis that they aren't being paid...

I have just read that Abbievie, the manufacturers of Venetoclax are pulling out ...

Dawson21

•2 years ago

14 Replies

Bumps In The Road

WARNING: A LITTLE RAW AND MAYBE NEGATIVE...SKIP IF YOU'RE NOT IN A GOOD PLACE I have been holding off on posting this update as I am still wrapping my head...

WARNING: A LITTLE RAW AND MAYBE NEGATIVE...SKIP IF YOU'RE NOT IN A GOOD PLACE ...

Jmiah717

•2 years ago

39 Replies

Lymphoma & CLL Highlights Virtual Workshop Jan 19, 2023 03:00 PM in London

Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop Time Jan 19, 2023 03:00 PM in London 10:00–13:00 EST/ 15:00–18:00 GMT/ 16:00–19:00 CET The Post-ASH...

Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop Time Jan 19, 2023 03:0...

lankisterguy

Volunteer•2 years ago

Be the first to reply

Answers Now: Should I Still Watch and Wait?Wednesday, January 25th, 2023 at 3:00pm ET/12:00pm PT

Answers Now: Should I Still Watch and Wait? Wednesday, January 25th, 2023 at 3:00pm ET/12:00pm PT Register here:...

Answers Now: Should I Still Watch and Wait? Wednesday, January 25th, 2023 at ...

lankisterguy

Volunteer•2 years ago

Be the first to reply

ASH 2022 | Key highlights in CLL: clinical trial updates combination therapies novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022

ASH 2022 | Key highlights in CLL: clinical trial updates & the role of combination therapies and novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022...

ASH 2022 | Key highlights in CLL: clinical trial updates & the role of combinati...

lankisterguy

Volunteer•2 years ago

2 Replies

Today's consultation

My consultant rang this morning and she is very pleased with me. My blood numbers are all good and within normal ranges. I asked about remission and as I...

My consultant rang this morning and she is very pleased with me. My blood number...

kitchengardener2

•2 years ago

16 Replies

Zoe personalised health programme

I'm wondering if anyone in this group has signed up for this? I'd be interested to hear if people feel it's worth the cost - £299 initially plus 1, 4 or 12...

I'm wondering if anyone in this group has signed up for this? I'd be interested ...

Sandywhatsit

•2 years ago

7 Replies

COVID - Continued Infection

I tested positive for Covid on the 26 December and received 5 days of Paxlovid and tested negative a few days latter following completion of the course. On...

I tested positive for Covid on the 26 December and received 5 days of Paxlovid a...

RobertCLL

•2 years ago

5 Replies

Low MCHC

Hello all. I have a new aspect of my cbc report that has just become Low. It is MCHC. Normal is 31.0 gm/dL to 36.5. I am now 30.7. I would love comments from...

Hello all. I have a new aspect of my cbc report that has just become Low. It is ...

davidgrush

•2 years ago

7 Replies

financials and Co Pay Assistance

I am incredibly thankful for the LLS CoPay assistance! I would have to choose between insurance or food without it. The first of every year is always...

I am incredibly thankful for the LLS CoPay assistance! I would have to choose be...

artrevue

•2 years ago

4 Replies

HOW TO TREAT DIARRHEA WHEN ON ACALABRUTINIB?

Any one with some idea of how to get relief from the runs, please help 🙏🏼

unairdefamille

•2 years ago

11 Replies

Travel Insurance experience

As a seventy one year old in watch and wait my husband and I had a annual worldwide policy including USA for £950 approx. In May last year We were looking to...

As a seventy one year old in watch and wait my husband and I had a annual worldw...

Jude693

•2 years ago

10 Replies

Serious itchy sores preventing sleep

I have read from others that large red very itchy spots can be a side effect of ibrutinib, which I've been taking for 3 years now. I had a previous session...

I have read from others that large red very itchy spots can be a side effect of ...

CCgroup

•2 years ago

9 Replies

CLL treatment

Hi there. I'm new to the forum. I was wondering if anyone is on Venetoclax and infusions of Obinutuzumab.my Venetoclax has been increased to 400mg a day. White...

Hi there. I'm new to the forum. I was wondering if anyone is on Venetoclax and i...

helpisonitsway

•2 years ago

14 Replies

Beta 2 Microglobulin Testing

Happy New Year Everyone ! How often should Beta 2 Microglobulin be tested ? Is this something that fluctuates periodically or does it generally remain...

Happy New Year Everyone ! How often should Beta 2 Microglobulin be tested ? ...

Cave123

•2 years ago

6 Replies

travel insurance

Does anyone in the UK know of insurance companies who will insure someone for a skiing trip who is aged 75 and who was recently diagnosed with CLL - on watch...

Does anyone in the UK know of insurance companies who will insure someone for a...

Maximus48

•2 years ago

9 Replies

About to Start Treatment

Hi about to start treatment and have been asked to choose between Venetoclax and Obinutuzumab orAcalabrutinab . Have been told both treatments are equal? was...

Hi about to start treatment and have been asked to choose between Venetoclax and...

Sunshine2422

•2 years ago

74 Replies

Starting Acalabrutinib, advice and what to expect?

Hello All, Happy New Year! I haven't wrote a post in a while, because my mom has been doing really well with her numbers constantly improving. Unfortunately...

Hello All, Happy New Year! I haven't wrote a post in a while, because my mom h...

paula_dae

•2 years ago

10 Replies

Developed AIHA while only slightly MRD positive

A month ago I could jog 4 miles without even breathing hard. Now I can't even go a block without having to stop, panting heavily, and my legs hurting. Because...

A month ago I could jog 4 miles without even breathing hard. Now I can't even go...

johnliston

•2 years ago

24 Replies

Cll. Acalabrutnib, famotidine

Does anyone take these?.I take - half of 40mg tab famotidine 2/3 hours before - 1 x 100mg capsule of acalabrutnib Both in evening time. Dies anyone have...

Does anyone take these?.I take - half of 40mg tab famotidine 2/3 hours before -...

Fwanni

•2 years ago

12 Replies

NUREX - 2127 FLOW CYTOMETRY TESTING

I just wanted to give a brief update on my latest flow test at MSK. Study sponsor, Nurex, wanted to take an extra tube of my blood this week to check for...

I just wanted to give a brief update on my latest flow test at MSK. Study spo...

steve5441

•2 years ago

3 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2023

What to do hmmmmm

Calquence now Capsule

covid the second time

For the newly diagnosed.?

Does insurance cover medications for CLL?

High Alkaline Phosphatase and knee/bone pain side effects with Venetoclax/Obinituzumab

Interesting read from CLL Society - High-Titer Convalescent Plasma for an Immunocompromised Patient with Active COVID-19

CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023

new to this and CLL

Venetoclax availability

Bumps In The Road

Lymphoma & CLL Highlights Virtual Workshop Jan 19, 2023 03:00 PM in London

Answers Now: Should I Still Watch and Wait?Wednesday, January 25th, 2023 at 3:00pm ET/12:00pm PT

ASH 2022 | Key highlights in CLL: clinical trial updates combination therapies novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022

Today's consultation

Zoe personalised health programme

COVID - Continued Infection

Low MCHC

financials and Co Pay Assistance

HOW TO TREAT DIARRHEA WHEN ON ACALABRUTINIB?

Travel Insurance experience

Serious itchy sores preventing sleep

CLL treatment

Beta 2 Microglobulin Testing

travel insurance

About to Start Treatment

Starting Acalabrutinib, advice and what to expect?

Developed AIHA while only slightly MRD positive

Cll. Acalabrutnib, famotidine

NUREX - 2127 FLOW CYTOMETRY TESTING

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