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CLL Support

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Quite the CLL journey

2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with...

2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologis...

FiArt12X

•2 days ago

38 Replies

colonoscopy and CLL

I did colonoscopy one week ago and have a CLL for 12 years. Now taken Velclexta for 3 months. After colonoscopy one week have heavy diarrheas and stomach...

I did colonoscopy one week ago and have a CLL for 12 years. Now taken Velclexta ...

farber

•2 days ago

9 Replies

Someone has just passed away

I am trying to reply to Nikkij who has just lost her husband. I am very sorry for your loss Nikki -if I may use this name for you. Please be strong....

I am trying to reply to Nikkij who has just lost her husband. I am very sorry f...

leopardo

•2 days ago

1 Reply

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cll society 2nd opinion

Has anyone here taken advantage of CLL free consultation? In light of just being told I have aggressive cll and the feeling my oncologist is dragging his feet...

Has anyone here taken advantage of CLL free consultation? In light of just being...

DianeSH

•3 days ago

45 Replies

heal thy self!

Here l am almost 5 years into a diagnosis of CLL. Just ‘ idling’ the time watching and waiting! I have not been able to adjust really! Illness has followed,...

Here l am almost 5 years into a diagnosis of CLL. Just ‘ idling’ the time watc...

Artygolf

•3 days ago

16 Replies

V + O for R/R CLL post FCR

I sent this to skyshark based on some info he posted but I was hoping for the whole group to chime in. I had 3 rounds of FCR in 2018 stopped because of...

I sent this to skyshark based on some info he posted but I was hoping for the wh...

skipro

•4 days ago

33 Replies

Sad update

My husband passed away an hour ago

Nikkij81

•4 days ago

215 Replies

A not so good update

My husband was admitted to icu yesterday he is not doing so good now but just hoping all this turns around

My husband was admitted to icu yesterday he is not doing so good now but just ho...

Nikkij81

•5 days ago

37 Replies

How to tell if Rituximab is working?

Are you able to tell if Rituximab is working from changes that show in your blood tests? What specifically would improve or should everything improve?

Are you able to tell if Rituximab is working from changes that show in your bloo...

Redkatt

•5 days ago

10 Replies

Cholesterol and CLL

Hoping for some information from the wise ones here - back in January my GP said she wanted to start me on a statin as my cholesterol was high. I said I...

Hoping for some information from the wise ones here - back in January my GP said...

Kbcjones

•6 days ago

30 Replies

Bug Bites and exaggerated reations

I have CLL, and got a bug bite on my forearm that has a large swollen lump about the size of a large egg. It seems to be getting larger too. It has a small...

I have CLL, and got a bug bite on my forearm that has a large swollen lump about...

RandyM

•6 days ago

18 Replies

uMRD question

uMRD is great, but for a majority that reach it, CLL will inevitably reoccur, and at that point, because of the strong selective pressures put on the surviving...

uMRD is great, but for a majority that reach it, CLL will inevitably reoccur, an...

PulsedTherapy

•6 days ago

116 Replies

Sepsis - a timely reminder

“The paramedics were reluctant to take me in,” he said. “They thought I should go and see my GP. I could have gone back to sleep. And I would have died I...

“The paramedics were reluctant to take me in,” he said. “They thought I should g...

bennevisplace

•7 days ago

34 Replies

Update on failing Pirtobrutinib and BTK Degrader Trial

I got a call from Upenn yesterday afternoon from the NP of the btk degrader trial. Very unexpected as I was told it had been pushed back to July. Turns out I...

I got a call from Upenn yesterday afternoon from the NP of the btk degrader tria...

ReneeSusan

•7 days ago

28 Replies

Rapid Weight Gain and Hard Swollen Abdomen

I have had CLL since 2017 and am still on watch and wait, which I prefer to call No Treatment Needed. Don’t have another appointment until the end of July....

I have had CLL since 2017 and am still on watch and wait, which I prefer to call...

Loweez

•7 days ago

18 Replies

"MRD" What Argument?

I often thought about posting my view on MRD testing, however, I have chosen to present possible considerations through medical research publications. Well...

I often thought about posting my view on MRD testing, however, I have chosen to ...

Smakwater

•8 days ago

24 Replies

why is mutated good?

I was exploring some posts to understand why 13q deletion is good when it occurred to me that I don't know why any mutation would be good. Why is "being...

I was exploring some posts to understand why 13q deletion is good when it occurr...

Vlaminck

•9 days ago

40 Replies

COVID vaccine May 2024

I had my latest covid vaccine on Saturday and it’s now Monday and my side effects as usual are horrible. Vomiting, thumping headache, stomach pain. The lymph...

I had my latest covid vaccine on Saturday and it’s now Monday and my side effect...

Braveheart19

•9 days ago

19 Replies

Cataract surgery

I often read the experiences on CLL shared by our group on HealthUnlocked, and it's reassuring. I was diagnosed with CLL in 2013. After a long period of watch...

I often read the experiences on CLL shared by our group on HealthUnlocked, and i...

attarintiki

•10 days ago

37 Replies

Complex Genetics Query

Hi EveryoneMy husband starts his Venetoclax on Thursday this week. His consultant sent a letter to his GP saying he is starting treatment. However it also...

Hi EveryoneMy husband starts his Venetoclax on Thursday this week. His consult...

Sanders9

•10 days ago

11 Replies

Head Massage

Today I visited a Young Farmers Show and there was a lovely lady doing head massages. She was hesitant to give me one because of my cancer. Does anyone...

Today I visited a Young Farmers Show and there was a lovely lady doing head mass...

Marisa

•11 days ago

20 Replies

CLL, Alcalabrutinib, Low Testosterone

“Hi Thanks everyone who responded to my last post “CLL, Alcalabrutinib, Gout & Steroids” it really does help. Usually i find myself on this site when i’m at...

“Hi Thanks everyone who responded to my last post “CLL, Alcalabrutinib, Gout ...

Tomaljoe69

•11 days ago

5 Replies

Calquence. No energy, not eating, not drinking. Delayed side effects or something else?

Hello, everyone. We are new here, family support and looking for some answers. Sorry, this may be a long post. tl;dr at the bottom. Brief background. Patient...

Hello, everyone. We are new here, family support and looking for some answers. S...

CuriousFamily

•11 days ago

6 Replies

Update on Failing Pirtobrutinib

After 8 months on pirto, my specialist confirmed the drug is indeed no longer working. We discussed 2 options, CAR-T (not a trial) and a BTK degrader trial at...

After 8 months on pirto, my specialist confirmed the drug is indeed no longer wo...

ReneeSusan

•12 days ago

41 Replies

Dental antibiotic

Hello everyone. I broke a tooth and the dentist gave me an appointment in 10 days, he has told me to take an antibiotic called Amoxiciline,(penicillin) for 7...

Hello everyone. I broke a tooth and the dentist gave me an appointment in 10 da...

GAVIOTA

•12 days ago

42 Replies

CLL Treatment

Hi there. I'm new. My story is I finished O and V last year..2023. I experienced lots of diarrhoea while on treatment. I had Astrovirus for a period of time...

Hi there. I'm new. My story is I finished O and V last year..2023. I experienced...

helpisonitsway

•12 days ago

3 Replies

Early results of the Pirtobrutinib, Obinituzumab, Venetoclax trial I'm on have just been published

Dr. Jain of M.D. Anderson has published an oral abstract in advance of the European Hematological Association Congress June 13-16, 2024:...

Dr. Jain of M.D. Anderson has published an oral abstract in advance of the Europ...

SeymourB

•13 days ago

19 Replies

What would you do??

My wife's niece who lives in the northern part of Alberta is coming too Ontario for the months of August and September. She has asked to stay with us as we are...

My wife's niece who lives in the northern part of Alberta is coming too Ontario ...

rcusher

•14 days ago

37 Replies

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

•14 days ago

39 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

•14 days ago

13 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

Quite the CLL journey

colonoscopy and CLL

Someone has just passed away

cll society 2nd opinion

heal thy self!

V + O for R/R CLL post FCR

Sad update

A not so good update

How to tell if Rituximab is working?

Cholesterol and CLL

Bug Bites and exaggerated reations

uMRD question

Sepsis - a timely reminder

Update on failing Pirtobrutinib and BTK Degrader Trial

Rapid Weight Gain and Hard Swollen Abdomen

"MRD" What Argument?

why is mutated good?

COVID vaccine May 2024

Cataract surgery

Complex Genetics Query

Head Massage

CLL, Alcalabrutinib, Low Testosterone

Calquence. No energy, not eating, not drinking. Delayed side effects or something else?

Update on Failing Pirtobrutinib

Dental antibiotic

CLL Treatment

Early results of the Pirtobrutinib, Obinituzumab, Venetoclax trial I'm on have just been published

What would you do??

Infections like pneumonia and sinus. Lessons learned.

Bloods Stable.

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