Posts - CLL Support | HealthUnlocked

CLL Support

22,611 members • 38,830 posts

All posts for September 2023

Venclexta dosing schedule question.

I am trying to figure out when I will be done with my Venclexta but I'm kind of confused. I started the ramp up on 11/17/2022. I started the Gazyva infusions...

I am trying to figure out when I will be done with my Venclexta but I'm kind of ...

Gradyboy

•8 months ago

6 Replies

Propafenone

Anyone here had positive results with Propafenone to curn a racing heart?

unairdefamille

•8 months ago

1 Reply

Do any of you have found an effective and safe way to deal with Afib due to Alcalabrutinib?

Another night in emergency due to arrrhythmia, heart racing 150 pules /minute. I am on only one pill/ day pllus 1 beta blocker and 2 blood thinners. They gave...

Another night in emergency due to arrrhythmia, heart racing 150 pules /minute. I...

unairdefamille

•8 months ago

7 Replies

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Obinutuzumab

I am starting to go into infusions for my c l l the drug that they're infusing me with is Obinutuzumab what are some of these side effects that you have had...

I am starting to go into infusions for my c l l the drug that they're infusing m...

Rick48

•8 months ago

15 Replies

Switch ibrutinib to zanubrutinib

Is there any problem switching from ibrutinib to zanubrutinib? Why wouldn't that be a good idea?

Is there any problem switching from ibrutinib to zanubrutinib? Why wouldn't th...

groggygarbad

•8 months ago

18 Replies

Chronic lymphocytic leukemia h

My doctor is thinking about starting me with treatment for my CLL with antibody infusions what can I expect as far as reactions to the treatment

My doctor is thinking about starting me with treatment for my CLL with antibody ...

Rick48

•8 months ago

5 Replies

IDH1 and Notch1

I was just informed by my doctor that I have a Notch1 and IDH1 mutation. Does anyone else have these mutations and what to do about it?

I was just informed by my doctor that I have a Notch1 and IDH1 mutation. Does an...

DaveCll

•8 months ago

18 Replies

Need advice on what might be causing this

I am currently ill with a low grade fever, very tender stomach and aching as if I have flu.From last Oct. to this past Jan. I had periodic episodes of bad...

I am currently ill with a low grade fever, very tender stomach and aching as if ...

cjc1

•8 months ago

10 Replies

Treatment

I’m probably on my to treatment! I would like to know if anyone has any advice on what treatment they would be on if they had a choice to choose?. My Dr said...

I’m probably on my to treatment! I would like to know if anyone has any advice o...

Tchapman

•8 months ago

6 Replies

Update.

Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last...

Had my last infusion of Rituximab today. A doctor came to speak with me, apparen...

Jacksc06

•8 months ago

40 Replies

Malignant melanoma advice

May I ask the help and advice of our awesome Forum. This is NOT for me, but for a friend who has just had a facial melanoma (?2a) removed and needs a wider...

May I ask the help and advice of our awesome Forum. This is NOT for me, but for...

JigFettler

Volunteer•8 months ago

8 Replies

when to wear a mask

I have just been told I have cll from my hematologist. Another appointment in a couple of weeks to get the formal diagnosis and status. I was told I will most...

I have just been told I have cll from my hematologist. Another appointment in a...

GnipGnop

•8 months ago

30 Replies

clementines and calquence

is it ok to eat clementines while taking calquence?

Sailor3

•8 months ago

4 Replies

Diverticulitis

I am diagonised CLL and have been treated with Ibrutinib since 2017, I have recently developed diverticulitis and was thinking of taking a Probiotic but...

I am diagonised CLL and have been treated with Ibrutinib since 2017, I have rece...

Chamberlayne

•8 months ago

8 Replies

low Immunoglobulins

Hello Everyone, My CLL is actually under control with normal labs, except low immunoglobulins. IGA and IGM basically nothing, IGG 401. Taken off Zanubrutinib...

Hello Everyone, My CLL is actually under control with normal labs, except low im...

Davidcara

•8 months ago

7 Replies

POST 6 CAR-T cell therapy

Those of you who have followed my CAR-T journey, and offered such warm support, will recall my upset at having my admission in June cancelled. I wrote that I...

Those of you who have followed my CAR-T journey, and offered such warm support, ...

casanova

•8 months ago

19 Replies

acalabrutinib and bacterial infection

I have had a bacterial infection since January. It includes about 40 wounds on my arms, legs, butt. My doctor insists that if i take the acalabrutinib that...

I have had a bacterial infection since January. It includes about 40 wounds on ...

akajeanie1

•8 months ago

7 Replies

Zona vaccine for CLL patients on Alcalabrutinib (CALQUENCE)

I had my Zona vaccine first dose 4 monhs ago with a reaction, swellin of the biceps part of my arm for about 10 days, treated with 15 minutes ice cold...

I had my Zona vaccine first dose 4 monhs ago with a reaction, swellin of the bic...

unairdefamille

•8 months ago

2 Replies

Lymphatic drainage massages

After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the...

After reading CLL is dormant in the blood stream but active in the lymph nodes I...

Rando21

•8 months ago

4 Replies

Clinical trial with monoclonal antibodies?

I've been asked to participate in a clinical trial in which I get an infusion of monoclonal antibodies. The team is wanting to know if this would help those...

I've been asked to participate in a clinical trial in which I get an infusion of...

Tangolover

•8 months ago

24 Replies

CLL Covid Concerns

Hi everyone, I was diagnosed with CLL about 6 years ago W&W. I am concerned about getting Covid. My husband does not wear a mask in public and was just at a...

Hi everyone, I was diagnosed with CLL about 6 years ago W&W. I am concerned ab...

Poolgirl

•8 months ago

14 Replies

lymphocytes/neutrophils

Hello everyone, My name is Kim and I’m a 57 year old female with CLL. I was diagnosed 13 years ago and underwent aggressive chemo as a result. After 5 of 6 of...

Hello everyone, My name is Kim and I’m a 57 year old female with CLL. I was dia...

Kimsome

•8 months ago

5 Replies

imbruvica

what to do about muscle and joint pain from imbruvica

jackkat1234

•8 months ago

3 Replies

A ‘wobble’ caused by subset 6 CLL.

Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’...

Hi all, a very ocasional póster here but avid reader of the many highly informed...

Petroc

•8 months ago

16 Replies

Acupuncture and CLL?

Hi , everyone, I'm interested to hear if anyone has tried acupuncture while on treatment for CLL (specifically while on Acalabrutinib)? I'd love for my...

Hi , everyone, I'm interested to hear if anyone has tried acupuncture while o...

OaktownA

•8 months ago

25 Replies

high monocytes

am at end of cycle 3 of o+v Today monocytes 31% I did need neupogen shot - wbc 1.6 and anc .6 does anyone know if this monocyte number is cause for...

am at end of cycle 3 of o+v Today monocytes 31% I did need neupogen shot - wb...

SurfSurf

•8 months ago

7 Replies

Citrus fruits and Acalabrutinib

Now I am aware that we can't have Grapefruit and Seville Oranges with Acalabrutinib but does anyone know if Lemons are allowed?

Now I am aware that we can't have Grapefruit and Seville Oranges with Acalabruti...

kitchengardener2

•8 months ago

12 Replies

Any suggestions on sleeping problems? What should be advisable to take?

As my husband was just recently diagnosed he has sleeping problems. Somebody told us to take CBD oil but we are unsure about it. Any suggestions?

As my husband was just recently diagnosed he has sleeping problems. Somebody tol...

KYOTOLOVER

•8 months ago

27 Replies

LDH Question

My typical quarterly checkup with my CLL doctor follows a certain routine - I have the blood draw and then, as soon as CBC results are available, I see the...

My typical quarterly checkup with my CLL doctor follows a certain routine - I ha...

hhk50

•8 months ago

25 Replies

Reaction to Rituximab Infusion

I have Cold Agglutinin Anemia due to indolent CLL. I have been on W&W. My doctor wants to start Rituximab infusion since my hemoglobin had gone down to 8.2 on...

I have Cold Agglutinin Anemia due to indolent CLL. I have been on W&W. My doctor...

emg112253

•8 months ago

22 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2023

Venclexta dosing schedule question.

Propafenone

Do any of you have found an effective and safe way to deal with Afib due to Alcalabrutinib?

Obinutuzumab

Switch ibrutinib to zanubrutinib

Chronic lymphocytic leukemia h

IDH1 and Notch1

Need advice on what might be causing this

Treatment

Update.

Malignant melanoma advice

when to wear a mask

clementines and calquence

Diverticulitis

low Immunoglobulins

POST 6 CAR-T cell therapy

acalabrutinib and bacterial infection

Zona vaccine for CLL patients on Alcalabrutinib (CALQUENCE)

Lymphatic drainage massages

Clinical trial with monoclonal antibodies?

CLL Covid Concerns

lymphocytes/neutrophils

imbruvica

A ‘wobble’ caused by subset 6 CLL.

Acupuncture and CLL?

high monocytes

Citrus fruits and Acalabrutinib

Any suggestions on sleeping problems? What should be advisable to take?

LDH Question

Reaction to Rituximab Infusion

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