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CLL Support

22,532 members • 38,709 posts

All posts for May 2024

Infections like pneumonia and sinus. Lessons learned.

I’m saddened and sorry for all those who have been suffering from pneumonia and respiratory infections. Been posted of late. As a physician who knows better,...

I’m saddened and sorry for all those who have been suffering from pneumonia and ...

skipro

•2 hours ago

5 Replies

Bloods Stable.

I'm writing to convey my relief after finding out that my 6 monthly bloods are stable.I was naturally quite anxious about his my blood levels were going to be...

I'm writing to convey my relief after finding out that my 6 monthly bloods are s...

Maya2007

•4 hours ago

4 Replies

Post Herpatic Neuralgia

My husband had shingles in October 2022. He had his Shingrex vaccines in 2021. He is still battling the pain from the post herpatic neuralgia. Absolutely none...

My husband had shingles in October 2022. He had his Shingrex vaccines in 2021. ...

Anita272

•6 hours ago

1 Reply

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New DX

I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I...

I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 201...

pkpayne

•17 hours ago

16 Replies

Winter Turning to Spring

snow shoeing in the mountains

skipro

•18 hours ago

Be the first to reply

Spring time

another sunset

skipro

•18 hours ago

2 Replies

Spring time has come in Gods beautiful mountains

So after getting on the right antibiotic and regaining my strength I went out on snowshoes on Friday. Nearly most of the 600 inches of snow have melted and...

So after getting on the right antibiotic and regaining my strength I went out on...

skipro

•18 hours ago

3 Replies

cll trial

hi I have recently started a trial of zanutrinib& sonrotoclax.I have been taking zanutrinib for about 7 weeks,sonrotoclax will be added in about a month.I...

hi I have recently started a trial of zanutrinib& sonrotoclax.I have been takin...

Grandadsboys

•19 hours ago

2 Replies

Ibrutinib VS V&O

Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ago and all is well so far thank goodness. What I’m wondering is: it seems from...

Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ...

GettinThruIt

•1 day ago

34 Replies

A recent consultation with a CLL specialist, and confirmation of genetic markers

My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was...

My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also p...

Sagarcanada

•1 day ago

12 Replies

Xpo1 significance

Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1...

Not been active for a while as my wife is on watch and wait since initially bein...

NewCll

•1 day ago

1 Reply

Burning tongue and metallic taste .

I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and...

I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax n...

GIDI

•1 day ago

9 Replies

Acalabrutinib and Blocked Ears

I started Acala two weeks ago and have had some side effects including bruises, blood blisters in the mouth and headaches. Yesterday I noticed that my ears...

I started Acala two weeks ago and have had some side effects including bruises, ...

ScruffyDuck

•1 day ago

9 Replies

Bone loss, due to any CLL treatments?

This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the...

This is not strictly related to CLL. My sister has had chemotherapy for breast...

MistyMountainHop

•1 day ago

11 Replies

An appeal for members!

Did you know that, although you are a member of this forum, you are not automatically a member of CLL Support? We’d like to change that and invite you to join,...

Did you know that, although you are a member of this forum, you are not automati...

pkguk2

Partner•2 days ago

5 Replies

Anemia

I finished V and O early April. I was told my blood results were great and I likely am in remission. I got my bloodwork results today for my appointment with...

I finished V and O early April. I was told my blood results were great and I lik...

Cottager1989

•3 days ago

9 Replies

venetoclax and ibruvica update

hello everyone hope everyone is doing well !!! well my mom stopped venetoclax and ibruvica and has been off the drugs since the 25 April, She is having a...

hello everyone hope everyone is doing well !!! well my mom stopped venetocla...

Eirinik

•3 days ago

5 Replies

Action too late

I very well can understand your Frustration. My IVIG introduction was very late, not considering my close to 0 Immunity. The result was as well Double...

I very well can understand your Frustration. My IVIG introduction was very late...

Traudel

•3 days ago

1 Reply

Protection from Coronaviruses That Haven’t Yet Emerged

To paraphrase Ozzy Osbourne, pandemics can spring up without warning. Although 101 years separated the most recent, truly global pandemics - the H1N1 virus...

To paraphrase Ozzy Osbourne, pandemics can spring up without warning. Although 1...

bennevisplace

•4 days ago

7 Replies

V&R Treatment

I live in Canada and I am on my 7 month's treatment. Last week, I was told by my oncologist that my treatment ended. I was overjoyed. But yesterday he told me...

I live in Canada and I am on my 7 month's treatment. Last week, I was told by m...

unairdefamille

•4 days ago

18 Replies

Moderna vaccine reaction ... surprise!

Hi all, I wanted to ask a naive question. Repeated tests show that I have as close to zero immunoglobulins as makes no difference. Unsurprisingly post all...

Hi all, I wanted to ask a naive question. Repeated tests show that I have as cl...

Me2AsWell

•4 days ago

10 Replies

So sorry Ornate

💓 sending love x

Lookintomyeyes

•5 days ago

1 Reply

COVID diagnosis

Just been on a 300 mile bike ride and returned with COVID. Don't feel too bad but should I contact consultant. I have had a vaccination about 3 weeks ago.

Just been on a 300 mile bike ride and returned with COVID. Don't feel too bad bu...

Guinness4822

•5 days ago

14 Replies

Warts and all

I consider myself fortunate, now in year 12 on BTK inhibitors with low, but adequate blood counts and a reasonably good quality of life that includes travel...

I consider myself fortunate, now in year 12 on BTK inhibitors with low, but adeq...

Bluesinthenight

•6 days ago

25 Replies

Cll AND Multiple Myeloma

Unfortunately my husband has both cll and multiple myeloma! He was diagnosed with cll 25years ago(aged 50)and has had various treatments each time he...

Unfortunately my husband has both cll and multiple myeloma! He was diagnosed wi...

Retiredlady

•6 days ago

2 Replies

CLL Physical Activity and Quality of Life Questionnaire

Hello, For those who don’t know me, I am Ellie Miles, a PhD student under Dr David Bartlett, investigating CLL/SLL-derived premature frailty and aiming to...

Hello, For those who don’t know me, I am Ellie Miles, a PhD student under Dr Da...

Ellieemiles

•6 days ago

13 Replies

a diagnosis at last

saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t...

saw consultant yesterday I have almost completed diagnosis few more tests to com...

Hilo13

•7 days ago

22 Replies

Any insight as to CAUSES of cll besides 'age'or 'genetics'?

I think I once seen this asked. But, apparently, not much insight besides 'age' on causes of cll. Some have suggested that it can be certain medicines ; blood...

I think I once seen this asked. But, apparently, not much insight besides 'age' ...

Hidden

•7 days ago

51 Replies

headache

I have been having been headaches for while now and my Lymphocyte count, blood 3.43 (High) and been like that for 6 months I worried. Is this something to be...

I have been having been headaches for while now and my Lymphocyte count, blood 3...

Shazna

•7 days ago

4 Replies

ALC doubling time

I was diagnosed with CLL/SLL Jan 2023.i completed O and V March 8 th of this year. My most recent labs show that my ALC went from 2.45 in March to 4.8 with...

I was diagnosed with CLL/SLL Jan 2023.i completed O and V March 8 th of this yea...

Shangonmom

•7 days ago

11 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2024

Infections like pneumonia and sinus. Lessons learned.

Bloods Stable.

Post Herpatic Neuralgia

New DX

Winter Turning to Spring

Spring time

Spring time has come in Gods beautiful mountains

cll trial

Ibrutinib VS V&O

A recent consultation with a CLL specialist, and confirmation of genetic markers

Xpo1 significance

Burning tongue and metallic taste .

Acalabrutinib and Blocked Ears

Bone loss, due to any CLL treatments?

An appeal for members!

Anemia

venetoclax and ibruvica update

Action too late

Protection from Coronaviruses That Haven’t Yet Emerged

V&R Treatment

Moderna vaccine reaction ... surprise!

So sorry Ornate

COVID diagnosis

Warts and all

Cll AND Multiple Myeloma

CLL Physical Activity and Quality of Life Questionnaire

a diagnosis at last

Any insight as to CAUSES of cll besides 'age'or 'genetics'?

headache

ALC doubling time

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