Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for September 2021

Any Knowledge of CLL in the eyes?

A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare event. Neither my hematologist-oncologist or CLL Specialist have ever had a...

A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare ev...

cll2013

•3 years ago

18 Replies

Wherever the evidence leads…

Ivermectin! I think that given the dilemma posed by CLL with regards to compromised immunity, I think we need to be open this option in light of the paper I...

Ivermectin! I think that given the dilemma posed by CLL with regards to compromi...

Luap001

•3 years ago

73 Replies

Side Effects of Bendamustine?

I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the...

I am asking for a friend who has follicular lymphoma and has been W&W for nine y...

KevinCLLITP

•3 years ago

10 Replies

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Covid antibodies lost in short time periode

Wanted to share my experience with vaccination : After two times Biontech I had 1036 AU/ml (< 50 negativ) in mid of May. On Thursday this week I had my 6...

Wanted to share my experience with vaccination : After two times Biontech I had ...

Reinhard

•3 years ago

18 Replies

immunohistochemistry need help understanding

I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL...

I am seeing my doctor on Tuesday but was able to get some results online from my...

kp58ny

•3 years ago

6 Replies

Cost for treatment

Hi everyone, i am hoping you can help. My dad was diagnosed with CLL about a month ago. He just received his information package in the mail from the...

Hi everyone, i am hoping you can help. My dad was diagnosed with CLL about a mo...

Rubymom

•3 years ago

8 Replies

UK: Here’s a list of people who are eligible for the 3rd dose of Covid vaccine.

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/09/C1399-Updated-JCVI-guidance-for-vaccinating-immunosuppressed-individuals-with-third-p

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/09/C1399...

zaax

•3 years ago

11 Replies

IBRUTINIB - Dental implant surgery

Question for CLL’ers being treated with IBRUTINIB and needing DENTAL WORK/IMPLANT: I’ve been on Obinutuzumab/Ibrutinib clinical trial for two years - and I’m...

Question for CLL’ers being treated with IBRUTINIB and needing DENTAL WORK/IMPLAN...

misterbee

•3 years ago

8 Replies

Thanks to CLL Support Association: News of my next challenge for Blood Cancer Awareness

First, thanks so much to CLLSA for all the fantastic work you do, your blogs and podcasts are superb, and you are a continued source of support to many...

First, thanks so much to CLLSA for all the fantastic work you do, your blogs and...

Davdow

•3 years ago

2 Replies

CD38 and ZAP-70

The CLL cells are positive for both CD38 and ZAP-70 what does this mean

kp58ny

•3 years ago

10 Replies

Help with test interpretation

I got a spike test a week after my Pfizer booster, having had my first one Jan 30 and second Jan 18. Since I had the test with routine blood work, I didn't...

I got a spike test a week after my Pfizer booster, having had my first one Jan 3...

beanlake14

•3 years ago

6 Replies

USA LLS Blood testing after 3rd / Booster Vaccination Leukemia & Lymphoma Society

I just received an email from the LLS offering to test my blood after my 3rd / booster vaccination. Hi Len, - As always, thank you for your participation...

I just received an email from the LLS offering to test my blood after my 3rd / b...

lankisterguy

Volunteer•3 years ago

19 Replies

ARDS treatment for CAR-T patients

This is a preprint article. Nevertheless, if I were a CAR-T candidate, I should like my medical team to be aware of this… and perhaps also if I were a...

This is a preprint article. Nevertheless, if I were a CAR-T candidate, I should ...

Luap001

•3 years ago

Be the first to reply

Just joined

Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be treated with venetoclax and Obinutuzumab but I also receive...

Hi, I am about to start treatment with acalabrutinib for my cll, I was originall...

Mtk1

•3 years ago

16 Replies

3rd Vax and Acala check up

Hey all, thought I'd finally share some things on here (and I'm not a share kinda guy) since I've been reading everyone else's updates, they are helpful. I...

Hey all, thought I'd finally share some things on here (and I'm not a share ki...

chirish

•3 years ago

6 Replies

Park still lovely but signs of Autumn.

Had a lovely walk around our local park this morning. The trees are showing signs of Autumn but flower beds still very colourful.

Had a lovely walk around our local park this morning. The trees are showing sig...

kitchengardener2

•3 years ago

12 Replies

UPDATE-visit to UCHL

Visit went well although hard to hear the consultant say I now have high risk with poor prognosis cll due to TP53 and unmutated, I was given two options-...

Visit went well although hard to hear the consultant say I now have high risk wi...

9876

•3 years ago

53 Replies

Massage and CLL

Sorry for weird question but I am new to this, my family member is suffering from CLL, Can CLL patient allowed to take full body massage or does it have some...

Sorry for weird question but I am new to this, my family member is suffering fro...

Richu097

•3 years ago

4 Replies

Be like an umbrella and actively shield those more vulnerable than yourself!

You may not know if the person standing next to you is immunocompromised. But you do know that wearing a mask helps protect our community. Be like an umbrella...

You may not know if the person standing next to you is immunocompromised. But yo...

bkoffman

CLL CURE Hero•3 years ago

1 Reply

UK offering third Covid vaccination to those with blood cancers

Just read this https://www.theguardian.com/world/2021/sep/01/britons-with-severely-weakened-immune-system-to-receive-third-covid-jab

Just read this https://www.theguardian.com/world/2021/sep/01/britons-with-severe...

YelvertonDevon

•3 years ago

8 Replies

CD 38 positivity issues

Hey, all, it is from this forum that I first came across mention of someone being "CD38 negative.' Read a bit more since then. I've been on W&W for almost 2...

Hey, all, it is from this forum that I first came across mention of someone bein...

Vlaminck

•3 years ago

4 Replies

Lisinopril/ Ace Inhibitors and Ibrutinib

Several weeks ago, it was mentioned on HU, that some people were told to stop Ace Inhibitors while on Ibrutinib. I am wondering if anyone found out what this...

Several weeks ago, it was mentioned on HU, that some people were told to stop A...

Davidcara

•3 years ago

7 Replies

Third Covid jab advised for most vulnerable 1%

Which is us. https://www.bbc.co.uk/news/health-58407643

zaax

•3 years ago

6 Replies

Feeling dreadful

Hi everyone, I've been taking Ibrutinib on the lowest dosage for approx 18 months now,my bloods have been okish,on the margins but not worrisome.Every now and...

Hi everyone, I've been taking Ibrutinib on the lowest dosage for approx 18 month...

Nickos66

•3 years ago

3 Replies

A study that should be a template for a CLL cohort

Can T-cells protect those of us with CLL against COVID where you have little to no antibody response post vaccination? Sure would be nice to know!...

Can T-cells protect those of us with CLL against COVID where you have little to ...

Luap001

•3 years ago

2 Replies

Today is World CLL Day! CLL Support is pleased to be participating in the very first World CLL Day and helping to raise awareness of CLL

This is an important day for the CLL community and especially for those affected by a diagnosis. Chronic lymphocytic leukaemia is the most common of all types...

This is an important day for the CLL community and especially for those affected...

pkguk2

Partner•3 years ago

1 Reply

World CLL Day

Good morning, 1st September, where is the year going. Getting used to it being dull now, longing for some sun. Blood tests this morning and then possibly a...

Good morning, 1st September, where is the year going. Getting used to it being d...

kitchengardener2

•3 years ago

Be the first to reply

New here

new to the group and have found the questions and answers very interesting; recently diagnosed (accidentally due to bloodwork) but otherwise healthy (I run...

new to the group and have found the questions and answers very interesting; rece...

celticfan

•3 years ago

3 Replies

Take Pred Dose before or after monoclonal antibody infusion? It is tomorrow am!

Hi, Anyone know if I should take my dose before - it seems it might cut efficacy - that is what probably happens with the vaccine sometimes. But I made...

Hi, Anyone know if I should take my dose before - it seems it might cut efficacy...

bluegirl7

•3 years ago

1 Reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2021

Any Knowledge of CLL in the eyes?

Wherever the evidence leads…

Side Effects of Bendamustine?

Covid antibodies lost in short time periode

immunohistochemistry need help understanding

Cost for treatment

UK: Here’s a list of people who are eligible for the 3rd dose of Covid vaccine.

IBRUTINIB - Dental implant surgery

Thanks to CLL Support Association: News of my next challenge for Blood Cancer Awareness

CD38 and ZAP-70

Help with test interpretation

USA LLS Blood testing after 3rd / Booster Vaccination Leukemia & Lymphoma Society

ARDS treatment for CAR-T patients

Just joined

3rd Vax and Acala check up

Park still lovely but signs of Autumn.

UPDATE-visit to UCHL

Massage and CLL

Be like an umbrella and actively shield those more vulnerable than yourself!

UK offering third Covid vaccination to those with blood cancers

CD 38 positivity issues

Lisinopril/ Ace Inhibitors and Ibrutinib

Third Covid jab advised for most vulnerable 1%

Feeling dreadful

A study that should be a template for a CLL cohort

Today is World CLL Day! CLL Support is pleased to be participating in the very first World CLL Day and helping to raise awareness of CLL

World CLL Day

New here

Take Pred Dose before or after monoclonal antibody infusion? It is tomorrow am!

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