Posts - CLL Support | HealthUnlocked

CLL Support

22,986 members • 39,473 posts

All posts for January 2024

Chest infection

My husband who has been on 200mg of Venetoclax for two years now has been ill since New years day, first the doctor thought flu because his chest sounded...

My husband who has been on 200mg of Venetoclax for two years now has been ill si...

Alfiebhoy

•7 months ago

12 Replies

CLL Specialist

Good morning all, I am anticipating using OSU as my specialists. Can anyone offer any insight to working with them? Thanks!

Good morning all, I am anticipating using OSU as my specialists. Can anyone offe...

ANewMe2024

•7 months ago

31 Replies

MRD Results

My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep...

My hubby's CLL Dr called today and gave us the good news. My hubby's blood has ...

spi3

•7 months ago

28 Replies

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COVID

Just looking for advice. My wife tested positive for COVID today and is quite ill. I was on a car with her before diagnosis and she was sneezing and coughing...

Just looking for advice. My wife tested positive for COVID today and is quite il...

Guinness4822

•7 months ago

26 Replies

Getting my Calquence prescription in ice storm

Not sure what to do about this… I have 4 days of Calquence left. Oregon is dealing with some bad weather and my doctor’s office is having trouble with both...

Not sure what to do about this… I have 4 days of Calquence left. Oregon is deali...

CoCoLuna11

•7 months ago

12 Replies

Nucleated RBC- first time on CBC in 6 yrs.

First time in a 6 year watch and wait that a high nRBC has showed up on my CBC. Value of 1.1. CLL Doc said this could indicate stress on the bone marrow's...

First time in a 6 year watch and wait that a high nRBC has showed up on my CBC....

Claybuster

•7 months ago

2 Replies

Venetoclax & Ibrutinib

what are your experiences with Venetoclax & Ibrutinib treatment...side effects...length of treatments

what are your experiences with Venetoclax & Ibrutinib treatment...side effects.....

PajamaGame

•7 months ago

11 Replies

AHCC --Dec 23 article

There has been a little bit of discussion here and there (often by me) about AHCC supplement which I have taken on and off. Here is an article about AHCC and...

There has been a little bit of discussion here and there (often by me) about AHC...

Vlaminck

•7 months ago

7 Replies

GVHD and skin dryness.

Unfortunately I have chronic graft versus host desiese of the skin and have controlled it with a steroid cream since my ASCT a year and a half ago. My only...

Unfortunately I have chronic graft versus host desiese of the skin and have cont...

Kraskie1915

•7 months ago

4 Replies

Post nasal drip

Greetings from VERY COLD Ohio. Does anyone have issues with chronic post nasal drip due to CLL? I do t know if I'm just hyper aware now or what..I know I've...

Greetings from VERY COLD Ohio. Does anyone have issues with chronic post nasal d...

ANewMe2024

•7 months ago

17 Replies

black eyes

does anyone get black eyes from Calquence? Thanks

Jschech

•7 months ago

3 Replies

itching

I was diagnosed in 2008 and on Watch and wait. Recently my WBC has gone up more than usual after my annual blood tests and I am itching all over during the...

I was diagnosed in 2008 and on Watch and wait. Recently my WBC has gone up more ...

Jillychoo

•7 months ago

5 Replies

newly diagnosed

my friend is newly diagnosed with CLL. It’s not at the stage of needing medical intervention. She wants to be proactive. Does anyone have experience of natural...

my friend is newly diagnosed with CLL. It’s not at the stage of needing medical ...

Oxygenlover

•7 months ago

16 Replies

cll and associated skin disorder

I was treated for CLL with Venetoclax for a year ending last April. It was very effective. Half-way through the treatment I developed a skin rash on arms and...

I was treated for CLL with Venetoclax for a year ending last April. It was very ...

nigeldodd

•8 months ago

13 Replies

NOT GOOD. NO CLL IN BONE MARROW. AML. OMG OMG. THEY WANT TO TRANSFER ME IMMEDIATELY TO SLOAN KETTERING

NOT GOOD NOT GOOD NOT GOOD. IM ON THE PHONE WITH INS. DOC WANTS TO TRANSFER ME TO SLOAN KETTERING. NO SIGN OF CLL IN BONE MARROW. SLMOST ENTIRELY AML WHICH IS...

NOT GOOD NOT GOOD NOT GOOD. IM ON THE PHONE WITH INS. DOC WANTS TO TRANSFER ME T...

JerrysGirl3

•8 months ago

116 Replies

Venetoclax

Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have...

Hi all Well we finally got to see a specialist. They did a bone marrow biopsy ...

JoeMcDote

•8 months ago

9 Replies

Coming off of Calquence.

After 2 years of treatment with infusions and Calquence (1 yr), I was taken off of Calquence because of major side effects. After being off the drug for 3...

After 2 years of treatment with infusions and Calquence (1 yr), I was taken off ...

Grgrma

•8 months ago

19 Replies

Fatigue, Headaches, Fevers, Numbness Without Obvious Cause?

My now 63-yo husband was diagnosed with CLL/SLL in January 2018 when external and internal lymph nodes removed during a prostatectomy tested positive for CD5,...

My now 63-yo husband was diagnosed with CLL/SLL in January 2018 when external an...

MommaDP

•8 months ago

8 Replies

GAMMA IV every 28 days.

I was diagnosed in November 7th 2019 following a bone marrow biopsy. Was on W & W until November26th 2023 when they started GAMMA...

I was diagnosed in November 7th 2019 following a bone marrow biopsy. Was on W &...

doc1947g

•8 months ago

4 Replies

Where to get free COVID tests in UK ?

I understand that those of us in the UK with CLL are eligible for free COVID tests available through local chemists. However I asked at my local pharmacy and...

I understand that those of us in the UK with CLL are eligible for free COVID tes...

FairweatherSailor

•8 months ago

15 Replies

Persistent lymphocytosis

Hi this is my first time posting here! Over the last year my WBC has been above reference range and my ALC has also been high for the same amount of time. I do...

Hi this is my first time posting here! Over the last year my WBC has been above ...

MiloTeddy

•8 months ago

8 Replies

Covid -

Good morning I just wanted to thank you to all for your replys and thoughts. Been overwhelming, so grateful . Made it easier to make a decision . There are...

Good morning I just wanted to thank you to all for your replys and thoughts. Be...

Stavrou1

•8 months ago

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Still new to this ,Is it too Early ?

54 yr old stage 2, going on 4 th year diagnosed. My WBC 200 with 1.5-2cm nodes ,no spleen swell ,some sweats for day or 2 now and then ,no trouble with...

54 yr old stage 2, going on 4 th year diagnosed. My WBC 200 with 1.5-2cm nodes...

Tolly1979

•8 months ago

10 Replies

blurry vision

Hi everyone, Has anyone on venetoclax experienced blurry vision? I've just started it for CLL, and I'm noticing that my vision has become blurry. Thanks.

Hi everyone, Has anyone on venetoclax experienced blurry vision? I've just sta...

Wagongal

•8 months ago

2 Replies

Alcohol and wine

Can you share with me your experiences, recommendations, and how much and how often? I have particularly enjoyed wine and its culture. I would hate to give up...

Can you share with me your experiences, recommendations, and how much and how of...

Jessielab

•8 months ago

37 Replies

3 months on acalabrutinib for SLL great news

Update three months on acalabrutinib for SLL/CLL, good news One-100mg acalabrutinib daily for 3 months --SLL in sacrum/tailbone and rest of body Dec...

Update three months on acalabrutinib for SLL/CLL, good news One-100mg acala...

234me

•8 months ago

2 Replies

FIRST WEEK ON ZANUBRUTINIB (BRUKINSA)

Happy New Year to all my friends on this site. My purpose of this post isn't to ask a question; instead, I wanted to share information with our group. I...

Happy New Year to all my friends on this site. My purpose of this post isn't ...

wizzard166

•8 months ago

62 Replies

Imbruvica

Hello, I have CLL stage 1, and because of lymph node enlargement have been on Imbruvica for 3 1/2 years. Doing well with reduction in lymph nodes and energy...

Hello, I have CLL stage 1, and because of lymph node enlargement have been on I...

Lem1

•8 months ago

7 Replies

meds fir a cold

I have cll and finally got a stuffy nose and a bit of cough. last time I had this I took sinutab but now I wonder if that is safe. I am not allowed...

I have cll and finally got a stuffy nose and a bit of cough. last time I had th...

Kmegood

•8 months ago

15 Replies

Acalabrutinib tablets versus capsules

Some time ago I read posts about changing Acalabrutinib from capsules to tablets. I think others were having problems with the different formulation but I...

Some time ago I read posts about changing Acalabrutinib from capsules to tablets...

Leo71

•8 months ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2024

Chest infection

CLL Specialist

MRD Results

COVID

Getting my Calquence prescription in ice storm

Nucleated RBC- first time on CBC in 6 yrs.

Venetoclax & Ibrutinib

AHCC --Dec 23 article

GVHD and skin dryness.

Post nasal drip

black eyes

itching

newly diagnosed

cll and associated skin disorder

NOT GOOD. NO CLL IN BONE MARROW. AML. OMG OMG. THEY WANT TO TRANSFER ME IMMEDIATELY TO SLOAN KETTERING

Venetoclax

Coming off of Calquence.

Fatigue, Headaches, Fevers, Numbness Without Obvious Cause?

GAMMA IV every 28 days.

Where to get free COVID tests in UK ?

Persistent lymphocytosis

Covid -

Still new to this ,Is it too Early ?

blurry vision

Alcohol and wine

3 months on acalabrutinib for SLL great news

FIRST WEEK ON ZANUBRUTINIB (BRUKINSA)

Imbruvica

meds fir a cold

Acalabrutinib tablets versus capsules

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