Posts - CLL Support | HealthUnlocked

CLL Support

22,515 members • 38,672 posts

All posts for April 2023

Foundation One heme blood test results

Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not...

Hi, I wonder if somebody knows about this topic. My platelets have been high for...

Cusube1967

•1 year ago

8 Replies

Revealed: the gut microbiome varies through the day and through the seasons

The balance of microbes in the human gut varies substantially from morning to night and even more by season, completely transforming the microbiome from summer...

The balance of microbes in the human gut varies substantially from morning to ni...

bennevisplace

•1 year ago

11 Replies

Treatment in Hawaii

Aloha! Wondering if there is anyone who has or is getting V+O treatment on the Big Island. Could you share with me your experience? I’m worried once I need...

Aloha! Wondering if there is anyone who has or is getting V+O treatment on the B...

Cfarrar

•1 year ago

14 Replies

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Stomach Pain- similar feeling to acid

Hi all, I was diagnosed with CLL 3 months ago at 41. Had no real symptoms other than swollen lymph nodes until now. I am experiencing stomach pain and swelling...

Hi all, I was diagnosed with CLL 3 months ago at 41. Had no real symptoms other ...

L33Dav

•1 year ago

13 Replies

New diagnosis

I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain....

I have just been diagnosed with CLL via complete blood count. I have not been se...

davjb15121

•1 year ago

26 Replies

sept149

just diagnosed two months ago with CLL. Put on wait but getting worse. 50 years of commercial fishing here in Alaska. Exposed to all sorts of chemicals in...

just diagnosed two months ago with CLL. Put on wait but getting worse. 50 years...

sept149

•1 year ago

20 Replies

Zanubrutinib and water intake and sodium level

I am a 78 year old woman who has been on a very long watch and wait since 1999. I was diagnosed in 1998 and given a small amount of prednisone and...

I am a 78 year old woman who has been on a very long watch and wait since 1999. ...

Bethsaida

•1 year ago

11 Replies

Anyone intersted in partaking in a video?

Some of you may know that last summer I took part in making a video that described my condition, treatment with Venetoclax and subsequent outcomes. It was made...

Some of you may know that last summer I took part in making a video that describ...

prbs2707

•1 year ago

5 Replies

ALC Doubled

OK...officially in panic mode....my ALC doubled within 1 year, 5.6 April 2022 to 13.1 April 2023, so actually a bit more than double within 1 year. I have...

OK...officially in panic mode....my ALC doubled within 1 year, 5.6 April 2022 to...

Cave123

•1 year ago

36 Replies

rituximab reactions

I have had 4 rituximab infusion and each time I have had a reaction. The first time time they had to stop the infusion because I had reached the max of...

I have had 4 rituximab infusion and each time I have had a reaction. The first t...

Alex830

•1 year ago

11 Replies

The current status and challenges of CAR-T therapy in CLL

A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of...

A few members of this group are scheduled for CAR-T and others might find themse...

Jm954

Administrator•1 year ago

14 Replies

First FDA-approved faecal microbiota pill for preventing recurrent C Difficile infection

As a few members of this group have testified, clostridium (C) difficile infection is an unpleasant experience. As the name suggests, the infection can be...

As a few members of this group have testified, clostridium (C) difficile infecti...

bennevisplace

•1 year ago

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Gym and swimming: thoughts please?

Background: diagnosed January this year, started O&V February, it's gone very well so far - feeling back to my old self, blood counts have been excellent for ~...

Background: diagnosed January this year, started O&V February, it's gone very we...

Greenbunnies

•1 year ago

29 Replies

CLL and ischemic cardiac disease.

So I went to see my cardiologist since I hadn't seen him in 7 years. I wanted to get him in the loop if I had any issues with my pending treatment for CLL....

So I went to see my cardiologist since I hadn't seen him in 7 years. I wanted t...

Rico49

•1 year ago

7 Replies

Mohs surgery

hello! I would like to know if anyone stopped ibrutinib before and after Mohs surgery. Thank you for your answers

hello! I would like to know if anyone stopped ibrutinib before and after Mohs s...

Bixilon

•1 year ago

11 Replies

WEIGHT GAIN NOT BAD FOR YOU?

In the middle of another Post I made the other day about my Spleen and lymph node growth in the abdomen, I raised a side bar question that likely went unseen...

In the middle of another Post I made the other day about my Spleen and lymph nod...

wizzard166

•1 year ago

15 Replies

Not rash issues but who knows ?

so I saw cll doc today. My wbc has doubled. Some numbers going off grid. He's starting me back on meds starting tonight at half dose as I had problems with...

so I saw cll doc today. My wbc has doubled. Some numbers going off grid. He's st...

JerrysGirl3

•1 year ago

11 Replies

Priority Services Register.

Can we be added to the UK's Priority Services Register?

zaax

•1 year ago

15 Replies

I experienced week long reactions to my previous covid vaccines/boosters and now I have Covid

I'm just curious if anyone else had a similar experience? "Real" covid is at this point this mimics my vaccine reactions. On a technical note, this sucks!

I'm just curious if anyone else had a similar experience? "Real" covid is at thi...

StobiMan

•1 year ago

13 Replies

Understanding blood counts

I came across this older article and thought I share. Please note our Administrators (Neil, Sofia, etc) are the ones who are very knowledgeable and are the...

I came across this older article and thought I share. Please note our Administr...

spi3

•1 year ago

4 Replies

Is thyroid hormone replacement allowed to take when you are on a BTK inhibitor?

Hello, beautiful community. My thyroid replacement therapy is finally stable after years of struggling and I'm afraid the BTK inhabitor can affect either...

Hello, beautiful community. My thyroid replacement therapy is finally stable a...

sunsetssr

•1 year ago

8 Replies

Spleen And Mesenteric Adenopathy

I have a basic question for any of you with experience related to a growing spleen. I realize all of you have growing spleens, so I mean those whose spleen...

I have a basic question for any of you with experience related to a growing sple...

wizzard166

•1 year ago

46 Replies

Enlarged Glands in Neck

Hi there, This is our first post. I’m getting worried about my husband’s enlarged glands in his neck. They are quite noticeable. He was diagnosed 2 years...

Hi there, This is our first post. I’m getting worried about my husband’s en...

Porty14

•1 year ago

5 Replies

What things made you feel better when dealing with depression, fatigue and fevers or other side effects of medication or treatment?

I'm the spouse of a CLL patient who is in chemotherapy right now, and could use some suggestions from cancer patients who have "been there." I can't seem to...

I'm the spouse of a CLL patient who is in chemotherapy right now, and could use ...

keikikumu

•1 year ago

18 Replies

A hellish 2 months. Very confused about MRD measurements.

Hi everyone, I've had FCR (2010) BR (2015) Ibrutinib (2017) and now Venetoclax for the past 18 months. My consultant says I'm no longer responding to...

Hi everyone, I've had FCR (2010) BR (2015) Ibrutinib (2017) and now Venetoclax ...

Ruhi9

•1 year ago

34 Replies

covid vaccines

hello everyone. I’m in the U.S. and completed BR in 11/18 and am in remission according to my labs so I have been getting all my screenings done. A month...

hello everyone. I’m in the U.S. and completed BR in 11/18 and am in remission a...

Ladydi49

•1 year ago

3 Replies

Well, that worked!

This week I was successful at getting the first 2 doses of Gazyva following the reaction last week. The pic above is the desensitization titration used for the...

This week I was successful at getting the first 2 doses of Gazyva following the ...

DMary

•1 year ago

4 Replies

UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today

Probably one of the best news stories that we have been able to announce in many years for patients in England and Wales. We are absolutely delighted that...

Probably one of the best news stories that we have been able to announce in many...

Jm954

Administrator•1 year ago

88 Replies

CCT Scan Ros

Hello all, I have just received a letter from the hospital, they have said I have a fatty lump on my right kidney. Thank you every one that responded to my...

Hello all, I have just received a letter from the hospital, they have said I ha...

Pekingese

•1 year ago

2 Replies

Swollen nodes on

Hi all, I am a 61 yr old male, living in Ireland. I've been "lurking" here for a good while, always very informative. I was Initially diagnosed with CLL in...

Hi all, I am a 61 yr old male, living in Ireland. I've been "lurking" here for...

CillDaraAbu

•1 year ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2023

Foundation One heme blood test results

Revealed: the gut microbiome varies through the day and through the seasons

Treatment in Hawaii

Stomach Pain- similar feeling to acid

New diagnosis

sept149

Zanubrutinib and water intake and sodium level

Anyone intersted in partaking in a video?

ALC Doubled

rituximab reactions

The current status and challenges of CAR-T therapy in CLL

First FDA-approved faecal microbiota pill for preventing recurrent C Difficile infection

Gym and swimming: thoughts please?

CLL and ischemic cardiac disease.

Mohs surgery

WEIGHT GAIN NOT BAD FOR YOU?

Not rash issues but who knows ?

Priority Services Register.

I experienced week long reactions to my previous covid vaccines/boosters and now I have Covid

Understanding blood counts

Is thyroid hormone replacement allowed to take when you are on a BTK inhibitor?

Spleen And Mesenteric Adenopathy

Enlarged Glands in Neck

What things made you feel better when dealing with depression, fatigue and fevers or other side effects of medication or treatment?

A hellish 2 months. Very confused about MRD measurements.

covid vaccines

Well, that worked!

UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today

CCT Scan Ros

Swollen nodes on

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