Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for May 2023

Need help finding a video that was posted her e 5 or more years ago

A few years ago someone helpfully posted a link to a video about a woman with CLL who developed a blood infection but who did not run a fever. She felt very...

A few years ago someone helpfully posted a link to a video about a woman with CL...

mdsp7

•1 year ago

2 Replies

ibrutinib/Diarrhea

I belong to this group a long time ago but haven’t written here for a long time! Today I’m a bit nervous and only have appointment next Thursday so i decide to...

I belong to this group a long time ago but haven’t written here for a long time!...

Deta

•1 year ago

4 Replies

My CLL Specialist seemed concerned. I need help understanding test results.

Hi my CLL was diagnosed in Sept. 2021. I was treated for AIHA in January 2022 with rituximab which got me back running. I have lost a lot of my fitness...

Hi my CLL was diagnosed in Sept. 2021. I was treated for AIHA in January 2022...

SantaZia

•1 year ago

12 Replies

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sun sensitivity and acalabrutinib

Hi, I’m seeing my consultant tomorrow to choose between acalabrutinib and V and O as treatment options, which he suggests are likely to be equally effective....

Hi, I’m seeing my consultant tomorrow to choose between acalabrutinib and V and ...

wakewatcher

•1 year ago

27 Replies

CLL and Covid !

My father recently got covid and had to be hospitalised for the same. He got covid related pneumonia and had to be on oxygen support (nasal cannula) for the...

My father recently got covid and had to be hospitalised for the same. He got co...

Iwrite

•1 year ago

4 Replies

Tumor Lysis Syndrome: What ( CLL ) Patients Need to Know (Leukemia and Lymphoma Society podcast)

Many of us are aware of the risk of tumor lysis syndrome (TLS) when we commence treatment, particularly with venetoclax and that the purpose of the venetoclax...

Many of us are aware of the risk of tumor lysis syndrome (TLS) when we commence ...

AussieNeil

Administrator•1 year ago

6 Replies

HU and prefibrotic myelofibrosis

Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to...

Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets ...

Apple238

•1 year ago

2 Replies

Dreams

I’m 78, on W&W, had CLL for five years. Keeping in mind that correlation does not equal causation, I’m wondering if others with have experienced a shift in...

I’m 78, on W&W, had CLL for five years. Keeping in mind that correlation does n...

HoHoHa

•1 year ago

12 Replies

creatinine 1.1

hello team, I’m on Imbruvica for 6 years. Have CLL 11 years. My numbers on creatinine is a little high 1.1. Is this bad sigh ? Thank you, Nataliya

hello team, I’m on Imbruvica for 6 years. Have CLL 11 years. My numbers on creat...

farber

•1 year ago

4 Replies

Recent Change

Hello, I've been a member of HealthUnlocked for about a year, this is my first post. Thanks to all who post and respond ... very nice and so heartfelt. I...

Hello, I've been a member of HealthUnlocked for about a year, this is my first p...

wwjdt

•1 year ago

11 Replies

more serious side effect of Zanubrutinib

Its Day 13 & I needed to get moving with my exercise since I seen a 5lb weight gain. On Day 12 I did 45min walk on my Treadclimber but not over 1 mile/hour....

Its Day 13 & I needed to get moving with my exercise since I seen a 5lb weight g...

CoachVera55

•1 year ago

35 Replies

Neutropenia

I have had CLL for 15 years and I have just developed a case of neutropenia. My number is 5.1, but the normal maximum is supposedly 4.5, are my levels...

I have had CLL for 15 years and I have just developed a case of neutropenia. My ...

Angela_G

•1 year ago

4 Replies

Paracetamol and Sepsis

So the CNS told me to avoid paracetamol when I had a temperature because it could mask sepsis!Is this right? Just scored 38.4° this evening! My wife is wagging...

So the CNS told me to avoid paracetamol when I had a temperature because it coul...

happyclappy

•1 year ago

5 Replies

Antibiotics? With or against immune system?

We've all had antibiotics for one reason or another but do they work alongside the immune system to give it a little helping hand or are they completely...

We've all had antibiotics for one reason or another but do they work alongside t...

happyclappy

•1 year ago

14 Replies

Hubby is in remission but still needs to take his A&V for an additional 8.5months.

Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal....

Great news! Yesterday we were informed that my hubby was in remission. His has...

spi3

•1 year ago

19 Replies

Drug rash

I am three months on Acalabrutinib an take aciclovir (antiviral) Have developed rash on ankles any oneelse experienced this.

I am three months on Acalabrutinib an take aciclovir (antiviral) Have developed ...

Simpomo

•1 year ago

4 Replies

venclexta cost

I am about ready to do O&V. I saw the price of venclexta on the net. It’s insane!! I have US Medicare part a and b only. I think I have no insurance for this...

I am about ready to do O&V. I saw the price of venclexta on the net. It’s insa...

sept149

•1 year ago

12 Replies

CLL - Next Generation Sequencing

I'm curious about Next Generation Sequencing for CLL. To my understanding, this type of test identifies resistant mutations, i.e., NOTCH1, ZAP-70, SF3B1, etc.,...

I'm curious about Next Generation Sequencing for CLL. To my understanding, this ...

Cave123

•1 year ago

10 Replies

Ichthyosis

I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this...

I found some odd looking skin and discovered it was likely ichthyosis which appa...

Rando21

•1 year ago

1 Reply

V + O , TP53 and p13

after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better...

after a great read through the recent posts on V+ O I have some confusion 1 my...

skipro

•1 year ago

12 Replies

valtrex and Zanubrutinib

I started 500 mg valtrex 4 days ago and Zanubrutinib will be delivered today. I have had chronic gastritis for 20 years and have taken 30 mg Prevacid since. It...

I started 500 mg valtrex 4 days ago and Zanubrutinib will be delivered today. I ...

Bethsaida

•1 year ago

4 Replies

When to start Antibiotics when get bad cold when on W and Wait

I have been on Watch and Wait for over 6 years and my lymphocyte count went up amrkedly after a very bad cold in December. After 2 weeks I was given...

I have been on Watch and Wait for over 6 years and my lymphocyte count went up a...

Marchmouse

•1 year ago

6 Replies

Alcohol

I have a basic question for our group. Is is alright to have a drink or two each week, or should we abstain completely? Years ago I used to have a drink or...

I have a basic question for our group. Is is alright to have a drink or two eac...

wizzard166

•1 year ago

74 Replies

Update.

Just returned from a face to face consultation with my haematologist. (The first since pre covid). Bloods are absolutely normal no increase in leukemia cells...

Just returned from a face to face consultation with my haematologist. (The first...

Jacksc06

•1 year ago

47 Replies

What can i eat or not eat! new member.

Hi, Anyone point me to what i deffo can and cant eat? bit confused with my new situation lol!

Hi, Anyone point me to what i deffo can and cant eat? bit confused with my new ...

Bankiedonnie67

•1 year ago

24 Replies

blood test for cll

I was recently diagnosed with CLL and was told I have had it for 2 years. This, 6 months after I was told I had the precursor.....anyway, my oncologist has...

I was recently diagnosed with CLL and was told I have had it for 2 years. This, ...

DianeSH

•1 year ago

30 Replies

CLL W+W related(?) back/ leg pain

Folks, I realise I should have asked the extensive knowledge base here this question before now! I have hitherto not connected any of my current symptoms to...

Folks, I realise I should have asked the extensive knowledge base here this ques...

Belfastbees

•1 year ago

16 Replies

Zanubrutinib 1st Side Effect

Took my shower last night & noticed a 2x2 inch large hematoma on the outer aspect of my right thigh & a quarter size bruise near my knee on that same leg....

Took my shower last night & noticed a 2x2 inch large hematoma on the outer aspe...

CoachVera55

•1 year ago

10 Replies

Second bivalent booster

I always react pretty dramatically to any vaccine-fever, terrible chills, fatigue, and sleeplessness. Yesterday when I popped into my local pharmacy for the...

I always react pretty dramatically to any vaccine-fever, terrible chills, fatigu...

ttomo

•1 year ago

10 Replies

sept149

was just wondering why OandV go together is it possible to just do Obintuzumab infusions to get good results? Thanks. Everyone is so encouraging I appreciate...

was just wondering why OandV go together is it possible to just do Obintuzumab i...

sept149

•1 year ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2023

Need help finding a video that was posted her e 5 or more years ago

ibrutinib/Diarrhea

My CLL Specialist seemed concerned. I need help understanding test results.

sun sensitivity and acalabrutinib

CLL and Covid !

Tumor Lysis Syndrome: What ( CLL ) Patients Need to Know (Leukemia and Lymphoma Society podcast)

HU and prefibrotic myelofibrosis

Dreams

creatinine 1.1

Recent Change

more serious side effect of Zanubrutinib

Neutropenia

Paracetamol and Sepsis

Antibiotics? With or against immune system?

Hubby is in remission but still needs to take his A&V for an additional 8.5months.

Drug rash

venclexta cost

CLL - Next Generation Sequencing

Ichthyosis

V + O , TP53 and p13

valtrex and Zanubrutinib

When to start Antibiotics when get bad cold when on W and Wait

Alcohol

Update.

What can i eat or not eat! new member.

blood test for cll

CLL W+W related(?) back/ leg pain

Zanubrutinib 1st Side Effect

Second bivalent booster

sept149

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