Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for May 2023

7th Covid

Have just had 7th Covid and really feel awful the fatigue which I suffer every day is unbelievable. Also have bad headache feel nauseous and stomache turning...

Have just had 7th Covid and really feel awful the fatigue which I suffer every d...

mia20

•1 year ago

8 Replies

Venetoclax and sun exposure

Hey, I have just started 400mg of venetoclax and would be grateful to hear people's experiences about sun exposure. On a couple of occasions in the last two...

Hey, I have just started 400mg of venetoclax and would be grateful to hear peo...

Our_wes123

•1 year ago

19 Replies

BCG for babies

Hi all , my Granddaughter is having a BCG I think it’s a live vaccine? I was just wondering if I have to keep my distance for a couple of weeks ? I

Hi all , my Granddaughter is having a BCG I think it’s a live vaccine? I was jus...

Pekingese

•1 year ago

15 Replies

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CLL in treatment and possible long Covid and managing isolation

My 74 year old husband has CLL and is on treatment consisting of Obinutuzumab infusions (just completed) and Venetoclax. He got Covid for the second time in...

My 74 year old husband has CLL and is on treatment consisting of Obinutuzumab in...

keikikumu

•1 year ago

12 Replies

after Venetoclax

is there any hope of therapy after ibrutinib and ventoclax no longer work for an 80-year-old lady?

is there any hope of therapy after ibrutinib and ventoclax no longer work for a...

Marymary19

•1 year ago

9 Replies

White Paper recommends steps to improve the care and support of people with Chronic Lymphocytic Leukemia who face immune challenges

". . . despite advances in therapy, infection remains a major risk in CLL and is a key challenge in CLL management. People with CLL face varied immune...

". . . despite advances in therapy, infection remains a major risk in CLL and is...

CLLerinOz

Administrator•1 year ago

14 Replies

CLL and Covid booster jab

I am just recovering from my second bout of Covid but have a booster jab scheduled for this Saturday which I am thinking I need to reschedule. Would anyone...

I am just recovering from my second bout of Covid but have a booster jab schedul...

PishySue

•1 year ago

12 Replies

eye trouble

my eyes are tearing so much people think lm crying. And my left eye is very bloodshot and a bit painful. I searched net about this but it just confused me...

my eyes are tearing so much people think lm crying. And my left eye is very bloo...

sept149

•1 year ago

8 Replies

Question on venclexta and bruising.

I am in my seventh month of V&O treatment. Last Thursday I started an antibiotic (Bactrim) and a couple days into it I noticed what looks like bruises on my...

I am in my seventh month of V&O treatment. Last Thursday I started an antibiotic...

Gradyboy

•1 year ago

6 Replies

Blurry Vision

I have recently begun treatment - I'm just about 2 months in. I began with a Rituxan infusion once a week for 4 weeks. Concurrently, I began Calquence...

I have recently begun treatment - I'm just about 2 months in. I began with a Ri...

Mango1957

•1 year ago

8 Replies

👩‍🍼Happy Mother’s Day💐💐

wishing everyone a very Happy Mother’s Day. Lots of fun and lots of family love to all.

wishing everyone a very Happy Mother’s Day. Lots of fun and lots of family love ...

AmCLL

•1 year ago

2 Replies

RSV now for close to two months

I've had this bad virus which I think is RSV for two months. I thought a few times I was getting better but it just keeps coming back. I seeing my oncologist...

I've had this bad virus which I think is RSV for two months. I thought a few tim...

Par3

•1 year ago

15 Replies

gp7591

Great post, just what I needed, enjoy the 🍷

Feavers

•1 year ago

1 Reply

Ibrutinib - Excessive Itching

My husband was diagnosed with CLL in Jan 2019. He began on daily Ibrutinib about a year later. About a year ago he started having severe itching that makes...

My husband was diagnosed with CLL in Jan 2019. He began on daily Ibrutinib abou...

macarr45

•1 year ago

34 Replies

Delayed 6th Covid Booster.

Hi All, as I have had a Viral Infection for nearly 5 weeks, I had to cancel my 6th booster Vaacine, and now have a later date. I am seeing my Haematologist at...

Hi All, as I have had a Viral Infection for nearly 5 weeks, I had to cancel my 6...

Vindicatrix

•1 year ago

7 Replies

"Very low risk" of colon cancer, so surveillance is unnecessary?

Yesterday arrived a letter from my local NHS Hospital Trust. I get them quite often, and as it happens I was anticipating an appointment with a physio about...

Yesterday arrived a letter from my local NHS Hospital Trust. I get them quite of...

bennevisplace

•1 year ago

13 Replies

Vitamin D

I am a 73 year old in remission after BR IN 2018. How much vitamin D should I take?

I am a 73 year old in remission after BR IN 2018. How much vitamin D should I t...

Clovelly

•1 year ago

17 Replies

new treatments

hi I am looking to do the OandV treatment. However I have read about some new approved cll drugs that may be better it’s a bit confusing to me and of course I...

hi I am looking to do the OandV treatment. However I have read about some new ap...

sept149

•1 year ago

19 Replies

ER visit after 13 days on Zanubrutinib (Diagnosed 13yrs 8mos b4 needing treatment)

I started Zanubrutinib April 24th, by 5th day noticed painful finger spasms, 7th day got large dark hematoma (brusing not new but larger size & darker color)....

I started Zanubrutinib April 24th, by 5th day noticed painful finger spasms, 7th...

CoachVera55

•1 year ago

55 Replies

For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug -- interesting book

Here is a link to cllsociety.org's article: For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug: An Interview With the Author...

Here is a link to cllsociety.org's article: For Blood and Money: Billionaires...

mdsp7

•1 year ago

8 Replies

2 clones

results of recent CT scan show 2 clones. Cll and Waldenstroms macroglobulinia with the WM being the majority. Anyone here even heard of this? My cll specialist...

results of recent CT scan show 2 clones. Cll and Waldenstroms macroglobulinia wi...

Imbub

•1 year ago

4 Replies

Measure CLL remission from date of treatment?

Folks: I seem to remember that someone posted on this recently. My specific question: I thought that "remission" is typically measured from, for example,...

Folks: I seem to remember that someone posted on this recently. My specific qu...

DinosaurDad

•1 year ago

8 Replies

Finished the O infusions today!

Had my last infusion today and all went well. All my counts were good as well. Just have to continue with the Venetoclax for the rest of the year and...

Had my last infusion today and all went well. All my counts were good as well. ...

tenniselbowz

•1 year ago

14 Replies

While on Watch and Wait

When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see...

When you are newly diagnosed with CLL , is it normal to be placed on W&W and not...

Sillysand

•1 year ago

33 Replies

huCART 19 -IL18 CLINICAL TRIAL

Hi, I just came across this video of Dr Svoboda from Penn Medicine discussing this new approch to CAR-T . This was from ASH 2022. Penn developed this off the...

Hi, I just came across this video of Dr Svoboda from Penn Medicine discussing th...

steve5441

•1 year ago

1 Reply

CLL treatments in France

Hello, is there anyone on this forum who has experience or knowledge with CLL and France. My husband was recently diagnosed and we are looking for any info...

Hello, is there anyone on this forum who has experience or knowledge with CLL an...

Minou1

•1 year ago

14 Replies

Swelling soft tissue alongside joint pain and inflammation - Acalabrutinib & Venetoclax Clinical Trial

Is or Has Anyone experienced extreme swelling of soft tissue normally in one area but sometimes two that lasts for approximately 5-7 days before moving to...

Is or Has Anyone experienced extreme swelling of soft tissue normally in one are...

bloodcancer

•1 year ago

18 Replies

What next after Acalabrutinib

I am interested to learn what second line treatment options are available, in the UK or elsewhere, following Acalabrutinib as first line mono therapy. From CLL...

I am interested to learn what second line treatment options are available, in th...

Hammerkev

•1 year ago

3 Replies

You are invited to our next free conference in Liverpool on Thursday May 25. The topic will be: "Owning your CLL Journey"

Location: The Spine Building, 2 Paddington Village, Liverpool L7 3FA Professor Andrew Pettitt will be our key speaker, with contributions also...

Location: The Spine Building, 2 Paddington Village, Liverpool L7 3FA Professor ...

pkguk2

Partner•1 year ago

5 Replies

Full Blood Counts

Hi All, can anyone please provide me with any information regarding 'What a Full Blood Count' is. I noticed on my last Blood Tests, that the laboratory states...

Hi All, can anyone please provide me with any information regarding 'What a Full...

Vindicatrix

•1 year ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2023

7th Covid

Venetoclax and sun exposure

BCG for babies

CLL in treatment and possible long Covid and managing isolation

after Venetoclax

White Paper recommends steps to improve the care and support of people with Chronic Lymphocytic Leukemia who face immune challenges

CLL and Covid booster jab

eye trouble

Question on venclexta and bruising.

Blurry Vision

👩‍🍼Happy Mother’s Day💐💐

RSV now for close to two months

gp7591

Ibrutinib - Excessive Itching

Delayed 6th Covid Booster.

"Very low risk" of colon cancer, so surveillance is unnecessary?

Vitamin D

new treatments

ER visit after 13 days on Zanubrutinib (Diagnosed 13yrs 8mos b4 needing treatment)

For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug -- interesting book

2 clones

Measure CLL remission from date of treatment?

Finished the O infusions today!

While on Watch and Wait

huCART 19 -IL18 CLINICAL TRIAL

CLL treatments in France

Swelling soft tissue alongside joint pain and inflammation - Acalabrutinib & Venetoclax Clinical Trial

What next after Acalabrutinib

You are invited to our next free conference in Liverpool on Thursday May 25. The topic will be: "Owning your CLL Journey"

Full Blood Counts

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