CLL Support | HealthUnlocked

CLL Support

22,740 members • 39,012 posts

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Sad update

My husband passed away an hour ago

Nikkij81

•27 days ago

221 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

•29 days ago

120 Replies

First Treatment for Richter’s Today

I was admitted into the hospital today for 5 days of DA EPOCH R w Venetoclax for large diffuse large b cell lymphoma, Richter’s Transformation, of my CLL....

I was admitted into the hospital today for 5 days of DA EPOCH R w Venetoclax for...

ReneeSusan

•3 days ago

34 Replies

6 months after diagnosis, ALC going up?

Hi everyone, I was diagnosed with CLL in early Dec 2023. I am not fully asymptomatic as one of my underarm lymph nodes is mildly enlarged. I also think I feel...

Hi everyone, I was diagnosed with CLL in early Dec 2023. I am not fully asympto...

sleepyjean75

•2 days ago

29 Replies

Richters Transformation Update- Treatment

I met with the local oncologist today to do treatment plan for confirmed Richters. I will be admitted on Monday to start 5 days of DA EPOCH - R with...

I met with the local oncologist today to do treatment plan for confirmed Richter...

ReneeSusan

•8 days ago

53 Replies

Continued Journey

I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT....

I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I ha...

FiArt12X

•2 days ago

22 Replies

STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)

Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete...

Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, ...

dwolden

•17 hours ago

12 Replies

My CLL has Transformed

Finally had a pet scan on May 28 which showed extensive transformed disease above and below the diaphram with extensive head and neck disease, a pelvic mass...

Finally had a pet scan on May 28 which showed extensive transformed disease abov...

ReneeSusan

•22 days ago

61 Replies

chemo nausea

hi I am about to embarque on my third chemo session the last two have been awful due to nausea which lasts about a week it’s so bad I struggle to eat and force...

hi I am about to embarque on my third chemo session the last two have been awful...

Hilo13

•17 days ago

51 Replies

first hike of summer

Awe what a beautiful day in the mountains. After a URI requiring 5 weeks of antibiotics and 3 surgeries I made it out for a fairly rigorous hike based on my...

Awe what a beautiful day in the mountains. After a URI requiring 5 weeks of ant...

skipro

•11 days ago

40 Replies

CLL replication rate

I am very curious about CLL cell replication rate over time and was hoping to see if anyone had any sources for any info. The CLL14 study had some very good...

I am very curious about CLL cell replication rate over time and was hoping to se...

PulsedTherapy

•21 days ago

54 Replies

W&W SEPSIS

My twin brother is on watch and wait. He had a minor day case operation to remove a small cancerous lump. 36 hrs later he was readmitted with sepsis. He's...

My twin brother is on watch and wait. He had a minor day case operation to remov...

Fastbike14

•6 days ago

27 Replies

Gallbladder removal with low platelets

I am in remission with CLL and now after a visit to A&E because of agonising pain they discovered Gallstones and want to remove my Gallbladder asap. My last...

I am in remission with CLL and now after a visit to A&E because of agonising pa...

MalcT

•19 hours ago

10 Replies

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

•26 days ago

55 Replies

Month 21 of 24 Rituximab and Venetoclax

I'm doing well with this treatment CLL wise with all bloods within normal range. Antibody levels are however below being of much use.Past 10 weeks I've had...

I'm doing well with this treatment CLL wise with all bloods within normal range....

Fastbike14

•5 days ago

22 Replies

Recent Chest CT scan to check for SLL progression, June 7, 2024 (part 2 of 2 posts)

IMPRESSION- Compared to May 30, 2024 The following is the chest CT scan. I'd appreciate your words of wisdom, encouragement, and advise. Treatment, it...

IMPRESSION- Compared to May 30, 2024 The following is the chest CT scan. I'd...

bagelstreet225

•11 days ago

33 Replies

2nd gen BCL-2 inhibitor in trials and looking promising -- Sonrotoclax (BGB-11417)

https://www.beigenemedical.com/CongressDocuments/Tam_BGB-11417-101_ASH_Presentation_2023.pdf This is a combo trial, sonrotoclax and Zanubrutinib on treatment...

https://www.beigenemedical.com/CongressDocuments/Tam_BGB-11417-101_ASH_Presentat...

PulsedTherapy

•2 days ago

14 Replies

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

•25 days ago

45 Replies

Can someone interpret this for me?

Regarding my blood draw that I do every two months, the oncologist says I'm doing well and the various items on the results page are within reasonable range....

Regarding my blood draw that I do every two months, the oncologist says I'm doin...

GettinThruIt

•14 days ago

32 Replies

How's Remission?

Hi friends, it's been awhile since I've posted here. I've been in remission for 3 and a half years. First treatment was Ibrutinib for one year then Obintuzimab...

Hi friends, it's been awhile since I've posted here. I've been in remission for ...

lorna222

•20 days ago

33 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

•1 month ago

42 Replies

To Bone marrow biopsy or not to bone marrow biopsy that is the question.

Hi everyone, I’m not sure if this is the right forum. Previously it was thought I had pernicious anaemia (I’m in that forum too) but then they weren’t sure. I...

Hi everyone, I’m not sure if this is the right forum. Previously it was thought...

Tellingbones

•3 days ago

12 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 month ago

42 Replies

Mask question

Hello, my spouse has CLL (treatment after about 6 years W&W, back on W&W.) I noticed more people on this site are getting COVID than during the worst of the...

Hello, my spouse has CLL (treatment after about 6 years W&W, back on W&W.) I not...

shmbak

•17 days ago

29 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

•1 month ago

40 Replies

Confused? Venetoclax 400 v. 300

I have posted a few times in response to others about my treatment. Now in Mth 9 and yesterday my Venetoclax dosage was lowered from 400 to 300. I was a bit...

I have posted a few times in response to others about my treatment. Now in Mth ...

Steffi50

•14 days ago

26 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

•28 days ago

37 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

•1 month ago

41 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

•30 days ago

37 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

•27 days ago

35 Replies

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