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CLL Support

22,673 members • 38,918 posts

All posts for April 2023

Update.

Hi good people. I have been quiet for a while now as I have been in quite a dark place for the last few months. I think the deaths of my mother and stepfather...

Hi good people. I have been quiet for a while now as I have been in quite a dark...

Jacksc06

•1 year ago

68 Replies

mobility issues following pelvic radiation

I have CLL which has transformed to DLBCL(stage 1). DLBCL was located in my lower right pelvic area. Both are currently in remission following 6 cycles of...

I have CLL which has transformed to DLBCL(stage 1). DLBCL was located in my lowe...

TroutFly

•1 year ago

2 Replies

why neutropenia?

anyone she’d light on why the Vclax is wiping out healthy neutrophils and T cells? It’s happening to me and has caused me to have some nasty infections. Thanks...

anyone she’d light on why the Vclax is wiping out healthy neutrophils and T cell...

Lawand1

•1 year ago

12 Replies

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Non Hodgkins lymphoma

I am taking Ibrutinib for secondary CNS DLBC non hodglins lymphoma ... can anyone tell me what I can take whilst on Ibrutinib to help me sleep.

I am taking Ibrutinib for secondary CNS DLBC non hodglins lymphoma ... can anyon...

Dottykr

•1 year ago

5 Replies

My chemo experience

I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist...

I started with fludarabine and rituximab which wasn't great. I had feelings of ...

kiwiCanuck

•1 year ago

8 Replies

Imbruvica

i was diagnosed with CLL in Dec. 2008 at age 69 ….i did w&w till i hit 400,000 WBC and went on Rituxan in June 2020 for 4 mo. and in remission. for approx. 1...

i was diagnosed with CLL in Dec. 2008 at age 69 ….i did w&w till i hit 400,000 W...

Candy1015

•1 year ago

17 Replies

Rebound COVID after Plaxovid.

So I took a COVID test yesterday just for the heck of it since having COVID starting March 26 and was treated with Paxlovid. Well to my surprise it came back...

So I took a COVID test yesterday just for the heck of it since having COVID star...

Gradyboy

•1 year ago

11 Replies

Navage?

Many of us (most?) suffer from sinus issues and we have our own tools to deal with these issues. My weapons of choice are Saline spray followed by Flonase...

Many of us (most?) suffer from sinus issues and we have our own tools to deal wi...

hhk50

•1 year ago

8 Replies

First appointment since ending V+O treatment

Today was my first appointment since ending my V+O treatment. All of my numbers except for lymphocytes are in the normal range. WBC - 4.8 HGB -15.9 PLT - 162...

Today was my first appointment since ending my V+O treatment. All of my numbers...

Dexterdoggg

•1 year ago

26 Replies

New and Emerging Treatments for Newly Diagnosed and R/R CLL/SLL: Targeted Inhibitors - Dr. Susan O'Brien

This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended...

This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL ...

lankisterguy

Volunteer•1 year ago

2 Replies

The Importance of Front-Loading Your Knowledge During the Early Journey of CLL/SLL Wednesday, April 12, 12:30 PM ET 90 min

A repeat post for the Free Webinar Presented by CLL Society Wednesday, April 12th 9:30 AM PT / 10:30 AM MT / 11:30 AM CT / 12:30 PM ET Duration: 90 minutes...

A repeat post for the Free Webinar Presented by CLL Society Wednesday, April 12t...

lankisterguy

Volunteer•1 year ago

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Management of muscle pain due to Acalbrutinib?

Having muscle pain at night with Acalbrutinib. Any suggestions? When I first went on the drug I had headaches and was able to use Excedrin Tension Headache to...

Having muscle pain at night with Acalbrutinib. Any suggestions? When I first wen...

Katie-LMHC-Artist

•1 year ago

11 Replies

Reaction to Venetoclax?

Aloha all. My husband was diagnosed with CLL in 2003 at age 53. He was on W&W until he started Acalabrutinib in January 2022. His WBC went down almost...

Aloha all. My husband was diagnosed with CLL in 2003 at age 53. He was on W&W un...

keikikumu

•1 year ago

15 Replies

To all who celebrate

Happy Easter

Gradyboy

•1 year ago

4 Replies

First post & Ibrutinib

Hi to all and for those who celebrate, Happy Easter! I was diagnosed with CLL at age 39. Had my first RFC in 2003, relapse in 2006. MUD SCT in 2010. Relapse...

Hi to all and for those who celebrate, Happy Easter! I was diagnosed with CLL a...

Miejaa

•1 year ago

15 Replies

Clinical Trial with BGB-11417

Hi all! Would love to hear from anyone who is participating in / has considered and/or has knowledge of the NCT trial 04277637 - the Non-Randomized,...

Hi all! Would love to hear from anyone who is participating in / has considered...

Chi-town_Girl

•1 year ago

15 Replies

Low levels of iron good for us?

Hey, folks, been coming across articles talking about how our bad cells crave iron and in fact can cause iron deficiencies by using it up. Many supplements...

Hey, folks, been coming across articles talking about how our bad cells crave ir...

Vlaminck

•1 year ago

28 Replies

Treatment and TLS and neutropenic sepsis

Hi , happy Easter to the CLL community Can anyone offer any advise on the chances of TLS and neutropenic sepsis with V and O treatment? Are they rare or...

Hi , happy Easter to the CLL community Can anyone offer any advise on the chan...

puppy43

•1 year ago

21 Replies

Covid rash from vaccine

As many of you may know I have since November suffered a terrible rash ,which has led to months of appointments at doctors and hospital plus anti and steroids...

As many of you may know I have since November suffered a terrible rash ,which ha...

cartwheels

•1 year ago

5 Replies

Abdominal fat with cll

Hi. I am on Ibrutinib for cll for last 2 years. Bloods show good response. My question is related to the fact that I have in last 6 months put on a lot of...

Hi. I am on Ibrutinib for cll for last 2 years. Bloods show good response. My qu...

Timree

•1 year ago

1 Reply

approaching eighth cycle.

Happy holiday to you all . I thought I’d give a quick update as I approach my eighth cycle . Nothing to report really latest bloods all looking good and my...

Happy holiday to you all . I thought I’d give a quick update as I approach my ei...

Hilo13

•1 year ago

7 Replies

CLL and Skin Cancer

My husband has a small innocuous growth on the side of his nose prior to needing treatment for CLL. His doctor and dermatologist both said it did not look...

My husband has a small innocuous growth on the side of his nose prior to needing...

lisakc1

•1 year ago

13 Replies

Blood work opinions.

I had my blood draw today and this is the first time my numbers have been out of normal range. I am 10 days post COVID, do you think that could alter my test?...

I had my blood draw today and this is the first time my numbers have been out of...

Gradyboy

•1 year ago

19 Replies

Replacement for Evusheld

Does anyone know if a pharmaceutical company is working on a replacement for Evusheld and, if so, has it started trials? Several months before emergency...

Does anyone know if a pharmaceutical company is working on a replacement for Evu...

TroutFly

•1 year ago

5 Replies

Severe Thigh Pain

I was diagnosed for CLL 12 months ago and had 6 courses of FCR Chemo which ended in August 22 . I have low immune system but feel ok, in the last month I have...

I was diagnosed for CLL 12 months ago and had 6 courses of FCR Chemo which ended...

Hrdy

•1 year ago

11 Replies

update

i informed in my last post about my father advised to start acalabrutinib soon . but it was paused for some time as we admitted him in hospital last to last...

i informed in my last post about my father advised to start acalabrutinib soon ....

Hidden

•1 year ago

10 Replies

7th Covid Vaccination booking now open. UK

Today, 5th April the NHS app will allow you to book the next Covid Spring booster. (I’m 6 months from the last). Vaccinations start on 17th April. We are...

Today, 5th April the NHS app will allow you to book the next Covid Spring booste...

devonrr

•1 year ago

10 Replies

O & V TREATMENT UPDATE PRE 4TH INFUSUON CHECK UP.

100mg/900mg/1000mg infusions done. Approved today for next 1000mg infusion 4/6/23.All CBC bloods are normal except MPV 5.7, HGB 12.3 which is a nothing burger,...

100mg/900mg/1000mg infusions done. Approved today for next 1000mg infusion 4/6/2...

Pacificview

•1 year ago

4 Replies

Increasing white cells

Hi, my white cells have increased from 43 to 5 and now 59 over a year. My GP asked me to call and sounded a bit panicky but I said I have my regular...

Hi, my white cells have increased from 43 to 5 and now 59 over a year. My GP as...

cleolynn

•1 year ago

5 Replies

BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD

BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies,...

BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenba...

lankisterguy

Volunteer•1 year ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2023

Update.

mobility issues following pelvic radiation

why neutropenia?

Non Hodgkins lymphoma

My chemo experience

Imbruvica

Rebound COVID after Plaxovid.

Navage?

First appointment since ending V+O treatment

New and Emerging Treatments for Newly Diagnosed and R/R CLL/SLL: Targeted Inhibitors - Dr. Susan O'Brien

The Importance of Front-Loading Your Knowledge During the Early Journey of CLL/SLL Wednesday, April 12, 12:30 PM ET 90 min

Management of muscle pain due to Acalbrutinib?

Reaction to Venetoclax?

To all who celebrate

First post & Ibrutinib

Clinical Trial with BGB-11417

Low levels of iron good for us?

Treatment and TLS and neutropenic sepsis

Covid rash from vaccine

Abdominal fat with cll

approaching eighth cycle.

CLL and Skin Cancer

Blood work opinions.

Replacement for Evusheld

Severe Thigh Pain

update

7th Covid Vaccination booking now open. UK

O & V TREATMENT UPDATE PRE 4TH INFUSUON CHECK UP.

Increasing white cells

BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD

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