Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for March 2022

New treatments for coronavirus

Hi everyone, On Monday I received a pack of lateral flow tests which I don’t think I had ordered. Just now I have received a letter by email from the NHS,...

Hi everyone, On Monday I received a pack of lateral flow tests which I don’t thi...

kitchengardener2

•3 years ago

12 Replies

Evusheld shots - What now?

I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib,...

I just had the two Evusheld shots this week. I had CLL for several years and las...

Iupiter

•3 years ago

2 Replies

2nd booster after having Evusheld

I have had the Evusheld shots and wonder if I should get a 2nd booster. Has anyone done this?

I have had the Evusheld shots and wonder if I should get a 2nd booster. Has any...

Lindaan

•3 years ago

5 Replies

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The treatment starts

Hi everyone, after the meeting and discussions with my Doctor I had signed the consent form for the treatment to start. It’s going to be a year of combined...

Hi everyone, after the meeting and discussions with my Doctor I had signed the ...

Altindal22

•3 years ago

9 Replies

Newly diagnosed

Found this site today when looking up some health concerns. Reading with tears in my eyes as I see others dealing with the same fears I am experiencing. I am...

Found this site today when looking up some health concerns. Reading with tears i...

Hallyho

•3 years ago

11 Replies

UK citizen visiting Australia

Hi everyone, I wonder if you can help. We live in the UK and my husband has CLL. He is having to travel to Australia in a weeks time and will be there for a...

Hi everyone, I wonder if you can help. We live in the UK and my husband has CLL....

shellsb

•3 years ago

5 Replies

Covid Vaccine in United States

Well, not sure if I want to go here but, wonder what the vaccine recommendation is for immune suppressed over 50 years old? Now that a fourth vaccine is...

Well, not sure if I want to go here but, wonder what the vaccine recommendation ...

Davidcara

•3 years ago

8 Replies

Venetoclax second line treatment failing. (57yrs old)

Hi all, I was diagnosed in 2015 with CLL with 17p del & started Idelalisib at the Christie which got it under control for a few years until it failed. I was...

Hi all, I was diagnosed in 2015 with CLL with 17p del & started Idelalisib at th...

spud2212

•3 years ago

14 Replies

Unusual results on standard differential -- would love feedback (and, if possible, reassurance?)

Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of...

Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, co...

Vlaminck

•3 years ago

50 Replies

IBRUTINIB

...

Dyba

•3 years ago

4 Replies

Is Fatigue a symptom of CLL?

I had a good but somewhat mystifying visit today with the oncologist. Last visit he was worried and this visit everything had settled down in terms of blood...

I had a good but somewhat mystifying visit today with the oncologist. Last visit...

CycleWonder

•3 years ago

44 Replies

CLL Society has especially great upcoming events posted just this week!

If you haven't yet joined your local CLL Society through cllsociety.org and are getting their emails about events, this weeks' email announced 2 upcoming...

If you haven't yet joined your local CLL Society through cllsociety.org and are ...

SofiaDeo

•3 years ago

7 Replies

What kind of fatigue do you have?

W&W for 17 years, numbers going up recently. For several years, on most days I wake up with a groggy head. I want to just close my eyes, put my head back on...

W&W for 17 years, numbers going up recently. For several years, on most days I w...

gardener58

•3 years ago

18 Replies

Anion gap redux, potassium?

Recently i saw on here a discussion of low anion gap. I tried searching on HU but only found posts by people talking about other diseases, so clearly not the...

Recently i saw on here a discussion of low anion gap. I tried searching on HU b...

Vlaminck

•3 years ago

9 Replies

Lifesaving COVID drugs are sitting unused on pharmacy shelves, HHS data shows

Lifesaving COVID drugs are sitting unused on pharmacy shelves, HHS data shows March 18, 20225:00 AM ET Pien Huang Treatments like monoclonal antibody infusions...

Lifesaving COVID drugs are sitting unused on pharmacy shelves, HHS data shows Ma...

lankisterguy

Volunteer•3 years ago

1 Reply

What do the numbers mean?

I was told no question is stupid so here goes… I haven’t seen a specialist yet but have scheduled an appointment. My diagnosis is CLL and all I really know is...

I was told no question is stupid so here goes… I haven’t seen a specialist yet b...

Ljbg

•3 years ago

20 Replies

W&W before treatment vs after initial treatment

A standard practice for treatment naive CLL patients is initial Watch & Wait, until WBC becomes high or clinical symptoms become obvious. Could the same W&W...

A standard practice for treatment naive CLL patients is initial Watch & Wait, un...

MikeOr

•3 years ago

3 Replies

W + W for 17 yrs - levels up recently

Since 12/2021 Lymphocytes - 77 to 81 Lymphocytes absolute - 44,000 to 58,000 Monocytes absolute - 3900 to 9000 White Blood Count - 57 to 71 I'm seeing my...

Since 12/2021 Lymphocytes - 77 to 81 Lymphocytes absolute - 44,000 to 58,000 Mon...

gardener58

•3 years ago

7 Replies

Box of Rapid Antigen Tests

This morning I received completely out of the blue a box of LFT Tests (I hadn't requested them as I already have a box that I have yet to use). I also still...

This morning I received completely out of the blue a box of LFT Tests (I hadn't ...

pompeym

•3 years ago

38 Replies

after bendamustine got covid

hi all after use bendamustine my numbers went down but unfortunately i got civid what should i do please help me thanks for sharing your thoughts

hi all after use bendamustine my numbers went down but unfortunately i got civid...

Hidden

•3 years ago

14 Replies

Vaccelerate program and Boostavac trials in Ireland

Has anyone come across this study? https://www.ucd.ie/research/news/2022/vacceleratesecondphaseiitrialboostavacstartsinireland/body,615411,en.html Early on in...

Has anyone come across this study? https://www.ucd.ie/research/news/2022/vaccele...

IWVC

•3 years ago

6 Replies

Has anyone with TP53 changes been diagnosed with Li-Fraumeni Syndrome?

I know TP53 plays a role in diagnosing and treating CLL, but I also found that Li-Fraumeni and TP53 are related. I was wondering if anyone here has been...

I know TP53 plays a role in diagnosing and treating CLL, but I also found that L...

Wishing1202

•3 years ago

15 Replies

LLS Dr. Greenberger and Dr. Saltzman update on COVID-19 pandemic, the LLS Antibody Research Study, patients responses to the COVID vaccines

Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study...

lankisterguy

Volunteer•3 years ago

2 Replies

Feeling overwhelmed

Hi … I just found out about my CLL. Waiting to see hematologist. I was told by my pcp I’m young to have this (49) .. don’t know what my numbers means etc.

Hi … I just found out about my CLL. Waiting to see hematologist. I was told by m...

Ljbg

•3 years ago

75 Replies

Music like exercise has a role in medicine.

I can't play an instrument and I cannot sing nor do I understand musicology ! But in social settings I used selections of music that induce specific moods and...

I can't play an instrument and I cannot sing nor do I understand musicology ! B...

janvog

•3 years ago

26 Replies

PCR TestsI

I thought CLL patients were supposed to get a test kit for when they caught Covid here's me in bed with Covid symptoms and no kit, although I have an old kit...

I thought CLL patients were supposed to get a test kit for when they caught Covi...

Ellim

•3 years ago

8 Replies

ALC and WBC doubles in 6 months

I just got diagnosed with CLL a year and a half ago during regular bloodwork. It was right after going through 5 weeks of radiation for breast cancer. I was...

I just got diagnosed with CLL a year and a half ago during regular bloodwork. It...

Cfarrar

•3 years ago

47 Replies

Covid antibody response to 4th vaccine

Hi Does anybody have any information or advice regarding the level of Covid antibody response. My husband has just had a result of 113.00 U/mL following his...

Hi Does anybody have any information or advice regarding the level of Covid anti...

Poohey

•3 years ago

4 Replies

Is it possible to pay for Evusheld in the US, as a visitor?

We're visiting our daughter in the USA in 10 days time and I'm wondering whether it would be possible for me to access Evusheld while we're there. Although...

We're visiting our daughter in the USA in 10 days time and I'm wondering whether...

UKfulloflife

•3 years ago

8 Replies

Have you had experience with Venetoclax?

Wherever you are in the world, if you feel you have benefited from Ventoclax, please let me know. Your story could be part of a brief video to be shown to the...

Wherever you are in the world, if you feel you have benefited from Ventoclax, pl...

andrewschorr

•3 years ago

15 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2022

New treatments for coronavirus

Evusheld shots - What now?

2nd booster after having Evusheld

The treatment starts

Newly diagnosed

UK citizen visiting Australia

Covid Vaccine in United States

Venetoclax second line treatment failing. (57yrs old)

Unusual results on standard differential -- would love feedback (and, if possible, reassurance?)

IBRUTINIB

Is Fatigue a symptom of CLL?

CLL Society has especially great upcoming events posted just this week!

What kind of fatigue do you have?

Anion gap redux, potassium?

Lifesaving COVID drugs are sitting unused on pharmacy shelves, HHS data shows

What do the numbers mean?

W&W before treatment vs after initial treatment

W + W for 17 yrs - levels up recently

Box of Rapid Antigen Tests

after bendamustine got covid

Vaccelerate program and Boostavac trials in Ireland

Has anyone with TP53 changes been diagnosed with Li-Fraumeni Syndrome?

LLS Dr. Greenberger and Dr. Saltzman update on COVID-19 pandemic, the LLS Antibody Research Study, patients responses to the COVID vaccines

Feeling overwhelmed

Music like exercise has a role in medicine.

PCR TestsI

ALC and WBC doubles in 6 months

Covid antibody response to 4th vaccine

Is it possible to pay for Evusheld in the US, as a visitor?

Have you had experience with Venetoclax?

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