Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for March 2022

2 years of shielding and today I tested positive

During the night I felt ill. Lots of sneezing, uncomfortable head and a little cough. No improvement once up and moving. Didn't feel dreadful and under normal...

During the night I felt ill. Lots of sneezing, uncomfortable head and a little c...

Harvist

•2 years ago

27 Replies

Post Covid

Post Covid symptoms, I'm vaccinated and boosted , Pfzier, 68 y/o male diagnosesd with CLL 12 mo ago, routine blood work, lymphocyte count fluctuate 44K-65K....

Post Covid symptoms, I'm vaccinated and boosted , Pfzier, 68 y/o male diagnosesd...

Landrew

•2 years ago

3 Replies

Fund Evusheld petition

A petition has been created to ask the UK government to fund Evusheld for blood cancer patients and other vulnerable groups. On the face of it, a worthwhile...

A petition has been created to ask the UK government to fund Evusheld for blood ...

scarletnoir

•2 years ago

21 Replies

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Covid sore throat can’t sleep 40 degrees temp is this normal

Hi guys contracted Covid 2 days ago seemed ok until now . Can’t sleep due to the sorest throat I’ve ever experienced. Don’t really have the eagerly to be...

Hi guys contracted Covid 2 days ago seemed ok until now . Can’t sleep due to the...

Driverps1

•2 years ago

27 Replies

You can sign a petiton for UK NHS to fund evusheld

Over 100 people have signed this petition. Evusheld seems to be hard to get hold of wherever you are. For Brits here is a petition you can sign...

Over 100 people have signed this petition. Evusheld seems to be hard to get hold...

Bartlet

•2 years ago

15 Replies

Vaccine-induced T cells provide long-lasting immune response to COVID-19

https://www.doherty.edu.au/news-events/news/vaccine-induced-t-cells-provide-long-lasting-immune-response-to-covid-19

https://www.doherty.edu.au/news-events/news/vaccine-induced-t-cells-provide-long...

zaax

•2 years ago

1 Reply

Rashes

Has anyone had more than one kind of rash. I finally got rid of one and a different one started. I have body swelling. I've only been back on imbruvica for...

Has anyone had more than one kind of rash. I finally got rid of one and a differ...

Josephine233

•2 years ago

7 Replies

Vulnerable Americans are desperate to find this Covid-19 drug ( Evusheld ) Thousands of boxes are sitting around unused

Vulnerable Americans are desperate to find this Covid-19 drug. Thousands of boxes are sitting around unused-...

Vulnerable Americans are desperate to find this Covid-19 drug. Thousands of boxe...

lankisterguy

Volunteer•2 years ago

7 Replies

Experience with COVID and strong antibodies

Hello, I just wanted to report my husband's experience with COVID. Last Wednesday I catch COVID and on Saturday he also tests positive. I panic, insist that...

Hello, I just wanted to report my husband's experience with COVID. Last Wednesd...

hope-73

•2 years ago

8 Replies

Low Platelet count from new member

CLL is there a platelet transfusion to boost platelet count.? It's the only troubling number in my bloodwork having been diagnosed in 2011.

CLL is there a platelet transfusion to boost platelet count.? It's the only trou...

PajamaGame

•2 years ago

12 Replies

Using our health data to benefit us all

For those who have become interested in access to their data and how it can be used to benefit us all this webinar organised by useMydata, a Patient movement...

For those who have become interested in access to their data and how it can be u...

Snellybob

•2 years ago

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Finally after my 5 day battle

Late yesterday afternoon the pharmacist from the CMDU rang me with a long rambling apology for why I don’t qualify for antivirals as the CMDU staff make the...

Late yesterday afternoon the pharmacist from the CMDU rang me with a long rambli...

anapurna

•2 years ago

21 Replies

Tixagevimab and Cilgavimab (Evusheld) information

Has anyone had experience with Tixagevimab and Cilgavimab (Evusheld)?

akajeanie1

•2 years ago

10 Replies

Has Anyone had allergic reaction to Evusheld shots?

After getting my first Evushelds I developed 3 small hives on stomach 36 hours after the shots. When I went in for a repeat I told them about the hives and...

After getting my first Evushelds I developed 3 small hives on stomach 36 hours a...

MV29

•2 years ago

7 Replies

Ibrutinib saving

When it was first approved by the medical system to pay for my ibrutinib, I had just bought a new bottle. Between that and the fact that I have cut from 3...

When it was first approved by the medical system to pay for my ibrutinib, I had ...

CCgroup

•2 years ago

2 Replies

Venclexta

Good Morning. Anyone experiencing lower back pain and diarrhea while taking Venclexta. I am taking 600 mg a day. (200 at 9am, 200 at 1pm and 200 at 5pm)...

Good Morning. Anyone experiencing lower back pain and diarrhea while taking Ven...

brooklyn7672

•2 years ago

5 Replies

Latest antibody count post 4th vaccine

Will I be needing more booster vaccines? I received the latest results from the LLS study and I was not pleased with the results. After a bout with covid at...

Will I be needing more booster vaccines? I received the latest results from the ...

rubberlegs68

•2 years ago

3 Replies

Omicron subvariants: New study gives Evusheld and Sotrovimab the thumbs-up

An in vitro study of several antibody therapies by Japanese researchers found diminished neutralisation of the Omicron variant and particularly of the BA.2...

An in vitro study of several antibody therapies by Japanese researchers found di...

bennevisplace

•2 years ago

2 Replies

I will never get covid treatment

Just been turned down for a 2nd time by the Lister Hospital CMDU in Herts. Today is day 4. Apparently I don’t meet the criteria. Am going mad knowing I’m...

Just been turned down for a 2nd time by the Lister Hospital CMDU in Herts. Today...

anapurna

•2 years ago

24 Replies

Why am I not getting antivirals?

Day 4 since going positive. I’m feeling worse. I’ve tried everything. My GP made an urgent referral early this morning as did my haematologist. Carried my...

Day 4 since going positive. I’m feeling worse. I’ve tried everything. My GP made...

anapurna

•2 years ago

17 Replies

prednisolone to hydrocortisone ?

I've been steadily reducing my prednisolone, currently down to 8mg (started on 93mg). Now I have received a letter from an "endocrinologist" which suggests I...

I've been steadily reducing my prednisolone, currently down to 8mg (started on 9...

FarmerJacks

•2 years ago

3 Replies

Post Covid Vaccinations

I have had Covid and received a Sotrovimab infusion on Feb 6 and understand that works for 90 days. I had my third vaccination on August 16, 2021. Should I...

I have had Covid and received a Sotrovimab infusion on Feb 6 and understand that...

BobTerry62

•2 years ago

11 Replies

Evushield in Spain?

I am an 82 years old male who was diagnosed with CLL Stage 0 10 years ago and luckily I'm still at that stage. I have had 3 covid-19 vaccinations but am aware...

I am an 82 years old male who was diagnosed with CLL Stage 0 10 years ago and lu...

Rogerb

•2 years ago

8 Replies

Date with FCR

Before anybody tells me there are better, newer options out there let me say that I am in Australia and FCR is my only option first line. I am 12 months watch...

Before anybody tells me there are better, newer options out there let me say tha...

Waves01

•2 years ago

43 Replies

Notch1 Geno mutation!

Is there anyone on here who has been identified to have 'Notch1 Geno mutation'? Started Alcalbrutinib in February and suffered horrendous headaches and...

Is there anyone on here who has been identified to have 'Notch1 Geno mutation'? ...

BethIlia

•2 years ago

13 Replies

Vaccine and Evulsheld

My spike test for the 4th vaccine was as follows: COVID-19 Spike RBD, Ab>250.00 U/mL <0.80 U/mL My oncologists says this is a good result, hence he will not...

My spike test for the 4th vaccine was as follows: COVID-19 Spike RBD, Ab>250.00 ...

beanlake14

•2 years ago

24 Replies

Turned down for antivirals

After being up all night saying the same stuff to 111, various GPs and even a paramedic team to my home at 3.30am I have finally been turned down by CMDU for...

After being up all night saying the same stuff to 111, various GPs and even a pa...

anapurna

•2 years ago

33 Replies

OncLive 9 CLL Videos - Optimizing the Treatment of CLL With Novel Therapies and more Take-home messages from ASH 2021

The OncLive Chronic Lymphocytic Leukemia condition center page is a comprehensive resource for clinical news and expert insights on treatment advances and...

The OncLive Chronic Lymphocytic Leukemia condition center page is a comprehensiv...

lankisterguy

Volunteer•2 years ago

7 Replies

Covid Antivirals

How bad does your Covid infection ihave to be before they issue the antivirals I was refused yesterday !!!!!!😡

How bad does your Covid infection ihave to be before they issue the antivirals ...

P444ete

•2 years ago

12 Replies

request for advice on experiences with acalabrutinib treatment for CLL

I am about to start CLL treatment with acalabrutinib and would welcome comments from other people with experience of using this treatment, especially with...

I am about to start CLL treatment with acalabrutinib and would welcome comments ...

giraffe162

•2 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2022

2 years of shielding and today I tested positive

Post Covid

Fund Evusheld petition

Covid sore throat can’t sleep 40 degrees temp is this normal

You can sign a petiton for UK NHS to fund evusheld

Vaccine-induced T cells provide long-lasting immune response to COVID-19

Rashes

Vulnerable Americans are desperate to find this Covid-19 drug ( Evusheld ) Thousands of boxes are sitting around unused

Experience with COVID and strong antibodies

Low Platelet count from new member

Using our health data to benefit us all

Finally after my 5 day battle

Tixagevimab and Cilgavimab (Evusheld) information

Has Anyone had allergic reaction to Evusheld shots?

Ibrutinib saving

Venclexta

Latest antibody count post 4th vaccine

Omicron subvariants: New study gives Evusheld and Sotrovimab the thumbs-up

I will never get covid treatment

Why am I not getting antivirals?

prednisolone to hydrocortisone ?

Post Covid Vaccinations

Evushield in Spain?

Date with FCR

Notch1 Geno mutation!

Vaccine and Evulsheld

Turned down for antivirals

OncLive 9 CLL Videos - Optimizing the Treatment of CLL With Novel Therapies and more Take-home messages from ASH 2021

Covid Antivirals

request for advice on experiences with acalabrutinib treatment for CLL

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