Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,045 posts

All posts for April 2024

tp53 mutation

Hi All, my dad has been diagnosed with CLL and has just had it confirmed that he has the TP53 mutation/deletion. He is stable at the moment and is currently on...

Hi All, my dad has been diagnosed with CLL and has just had it confirmed that he...

Fortheloveoffarming

•7 months ago

8 Replies

Bendamustine

Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab In 2021 I received only 1 cycle of Bendamustine (90) + Rituximab. No further...

Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab ...

dickcll

•7 months ago

7 Replies

Pemgarda

I’ve been offered the Pemgarda infusion but was told I was the only patient who requested it at my oncology office. Has anyone received it?

I’ve been offered the Pemgarda infusion but was told I was the only patient who ...

Cllinmaryland

•7 months ago

7 Replies

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Act QUICKLY. L&LS Financial Assistance OPEN for CLL Patients

I applied and received award news in ten minutes....

Lily_Pad_Master

•7 months ago

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Validation

I am positively buzzing after my two days at parliament in Wellington Aotearoa NZ as part of a summit focused on valuing life. I guess I had lost my...

I am positively buzzing after my two days at parliament in Wellington Aotearoa N...

Kiwidi

•7 months ago

2 Replies

i had my blood work done ,my wbc count is 28.0 and my lymphocyte count is 24.6 erd blood cell 4.53 platelet 106 ,8 weeks on brukinsa.

i was diognosed with 4th stage cll/sll ten years ago now i had my blood work done today my wbc count is 28.0 and my absolute lymphocyte count is 24.6, red...

i was diognosed with 4th stage cll/sll ten years ago now i had my blood work don...

ceciljr1958

•7 months ago

3 Replies

do I need the spring Covid shot?

I have had 7 covid shots since the start of Covid. On October 10 of 2023 I received the Moderna bivalent booster, as well as the flu shot and RSV shot. I...

I have had 7 covid shots since the start of Covid. On October 10 of 2023 I rece...

Claybuster

•7 months ago

9 Replies

Latest results questions

I need help, does anyone understand these results. I am currently on the Bruin 321 clinical trial and am on 3rd cycle of Pirtobrutinib. So far things are going...

I need help, does anyone understand these results. I am currently on the Bruin 3...

rcusher

•7 months ago

9 Replies

covid shot

hello , I just had another Covid shot, and each time I have had a large swollen lymph node I Under the arm where I had the injection, but this time I have two...

hello , I just had another Covid shot, and each time I have had a large swollen ...

Grandmajoanie

•7 months ago

9 Replies

Nattokinase

Does anyone take natto or vitamin k, and does it help with side fx of acalabrutinib? Thanks.

Does anyone take natto or vitamin k, and does it help with side fx of acalabruti...

Zabb

•7 months ago

13 Replies

Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group

Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase...

Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations...

AussieNeil

Administrator•7 months ago

8 Replies

CLL + nephrotic syndrome: furosemide problem

Hello, I'm here to share something with the community that may be important for those who have had nephrotic syndrome related to an infiltration of CLL in the...

Hello, I'm here to share something with the community that may be important for ...

BMFCDRW

•7 months ago

5 Replies

Reoccurring CLL

Hello Everyone I haven't been posted anything for a while. My father started venclyxto treatment last week he is doing ok at the moment he only complaining...

Hello Everyone I haven't been posted anything for a while. My father started ve...

agneshun

•7 months ago

4 Replies

CLL, Alcalabrutinib, Gout & Steroids

Hi I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episodes, some are more severe than others. The doctor prescribed a course of...

Hi I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episo...

Tomaljoe69

•7 months ago

38 Replies

Wendy

My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen...

My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years lat...

Fluxthecat10

•7 months ago

2 Replies

What is the longest remission that I can hope for?

I am wondering if there is any guide as to how long remission after modern treatments might last? For example V and O - are there any stats as to people who've...

I am wondering if there is any guide as to how long remission after modern treat...

Research123

•7 months ago

12 Replies

Understanding my Karyotype report

Hi all, I’m recently diagnosed and just got my most recent labs back for 1) IGHV, 2) Karyotype, and 3) Beta 2 Microglubin ————— For reference: IGHV -...

Hi all, I’m recently diagnosed and just got my most recent labs back for 1) IGHV...

CBSN

•7 months ago

3 Replies

Is Septrin (Co-trimoxazole) a lifelong medication

Greetings. Septrin was part of the medication I started at the commencement of Ibrutinib. I take 1 tab 960 mg evey alternate days. Have been on it for about 6...

Greetings. Septrin was part of the medication I started at the commencement of I...

Oldscores1

•7 months ago

34 Replies

Fish Panel Results/Husbands Passing

Fish Panel Results Tumor/ Prognostic Markers: CD38+ ZAP70+ IgVH unmutated Trisomy 12. My husband was diagnosed with CLL 5 years ago . His CLL doctor...

Fish Panel Results Tumor/ Prognostic Markers: CD38+ ZAP70+ IgVH unmutated T...

Debcap61

•7 months ago

8 Replies

anemia

I have been on watch and wait for three years, I mostly had SLL, with alot of lymph node involvement. The last couple of months my hemoglobin and hematocrit...

I have been on watch and wait for three years, I mostly had SLL, with alot of ly...

Gino23

•7 months ago

25 Replies

lymph node swelling

Hi Everyone, I haven’t posted in a while. I have cll diagnosed in 2019. Now with with decent labs but lately my arm pits have been super itchy with what...

Hi Everyone, I haven’t posted in a while. I have cll diagnosed in 2019. Now wi...

sbkris1

•7 months ago

6 Replies

WBC and Lymphocytes are increasing

Hello everyone, I am posting after a year. My wife was diagnosed with CLL in 2020. She is still in W&W form. Her WBC and Lymphocyte are climbing linearly....

Hello everyone, I am posting after a year. My wife was diagnosed with CLL in 20...

Sagarcanada

•7 months ago

20 Replies

Devastated

I went to my first three month blood test today. I am at Rai 0. I feel great. My WBC and Lymphocytes doubled in 3 months. I am starting V and O on Monday. I am...

I went to my first three month blood test today. I am at Rai 0. I feel great. My...

Hidden

•7 months ago

97 Replies

VJHemOnc - new interactive CLL case study w transcript

https://www.vjhemonc.com/feature/vj-in-practice-hempath-cll-case-study/?nl&utm_source=VJHemOnc+Newsletter+Subscribers&utm_campaign=c8dc3a45c5-EMAIL_CAMPAIGN_202

https://www.vjhemonc.com/feature/vj-in-practice-hempath-cll-case-study/?nl&utm_s...

db601

•7 months ago

7 Replies

A mother

Can anyone suggest a top hematologist in or near Pittsburgh? My daughter is moving from Florida where she has been seen at Moffit for CLL/SLL to Pittsburgh....

Can anyone suggest a top hematologist in or near Pittsburgh? My daughter is mo...

conjoy

•7 months ago

21 Replies

Haemophilus influenzae

Has anyone been able to get immunised against haemophilus influenzae? I've just had a bad infection which has been hard to shake off and I don't want it again....

Has anyone been able to get immunised against haemophilus influenzae? I've just ...

1234emc

•7 months ago

18 Replies

severe covid vaccine reaction, & ibuprofen

After 4 or 5 covid vaccines with very minimal side effects , the most recent vaccine left me sick with fever and several lymph nodes swelling up within a few...

After 4 or 5 covid vaccines with very minimal side effects , the most recent vac...

humaniquarian

•7 months ago

19 Replies

Another update

My husband is finally having treatment for his cll they are putting him on acalabrutinib his spleen is six times the size it should be his red cells are slowly...

My husband is finally having treatment for his cll they are putting him on acala...

Nikkij81

•7 months ago

7 Replies

Low vitamin d high serum ferritin

Hello My husband has been on watch and wait for 12 years. Due to a constant chronic cough he recently had a blood test which showed low vitamin D levels of 45...

Hello My husband has been on watch and wait for 12 years. Due to a constant chro...

Debs4

•7 months ago

12 Replies

nana1961

looks like I’m gonna be in a trial combo. Zanubrutinib and soronaclax. It’s about a year regimen. The other is Gazyva and ventoclax same time frames

looks like I’m gonna be in a trial combo. Zanubrutinib and soronaclax. It’s abou...

Nana1961

•7 months ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2024

tp53 mutation

Bendamustine

Pemgarda

Act QUICKLY. L&LS Financial Assistance OPEN for CLL Patients

Validation

i had my blood work done ,my wbc count is 28.0 and my lymphocyte count is 24.6 erd blood cell 4.53 platelet 106 ,8 weeks on brukinsa.

do I need the spring Covid shot?

Latest results questions

covid shot

Nattokinase

Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group

CLL + nephrotic syndrome: furosemide problem

Reoccurring CLL

CLL, Alcalabrutinib, Gout & Steroids

Wendy

What is the longest remission that I can hope for?

Understanding my Karyotype report

Is Septrin (Co-trimoxazole) a lifelong medication

Fish Panel Results/Husbands Passing

anemia

lymph node swelling

WBC and Lymphocytes are increasing

Devastated

VJHemOnc - new interactive CLL case study w transcript

A mother

Haemophilus influenzae

severe covid vaccine reaction, & ibuprofen

Another update

Low vitamin d high serum ferritin

nana1961

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