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CLL Support

22,788 members • 39,110 posts

Specialsts

Just a question really, has it happened to anyone! Got my diagnosis a year and half ago CLL, never seen the specialist in all that time, got the diagnosis...

Just a question really, has it happened to anyone! Got my diagnosis a year and h...

PusscatsGoodies

•2 days ago

74 Replies

Sad update

My husband passed away an hour ago

Nikkij81

•1 month ago

221 Replies

CRAMP

My husband is getting severe bouts of Cramp, any ideas on what he can do or take would be gratefully received. Thank you in advance.

My husband is getting severe bouts of Cramp, any ideas on what he can do or take...

opal11uk

•11 days ago

65 Replies

p17 deletion

My Gp estimates I have 5 years. I am 77 and should not complain if that is all I have. I wonder how many of our lists have the C53 with 17p deletion and how...

My Gp estimates I have 5 years. I am 77 and should not complain if that is all I...

DianeSH

•11 days ago

65 Replies

root canals

hi all , I have been on the W and W program. My blood dis-order was discovered in 2019. I referred to it as a blood disorder as they still haven’t...

hi all , I have been on the W and W program. My blood dis-order was discov...

Jrugg

•4 days ago

25 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

•15 days ago

46 Replies

Disease Progression on Pirtobrutinib

After my last two CT scans (3 months apart) the oncologist told me the lymph nodes have grown and the dark monster is back. I was confused because my blood...

After my last two CT scans (3 months apart) the oncologist told me the lymph nod...

steve_canada

•8 days ago

34 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

•20 days ago

53 Replies

A Secondary Primary Malignancy hit me

The doctors tell us that you don't die from CLL; you die with CLL. What they don't tell you very often is that even though it isn't the CLL that gets you, it...

The doctors tell us that you don't die from CLL; you die with CLL. What they do...

hhk50

•6 days ago

29 Replies

BTKi vs BCL-2

Does anyone have a good understanding of the advantages/disadvantages of BTKi’s and BCL-2’s? Trying to understand my doctor’s recommendation for treatment. Why...

Does anyone have a good understanding of the advantages/disadvantages of BTKi’s ...

Lil0ppie

•2 days ago

16 Replies

CLL and Osteoporosis

Need to start treatment for osteoporosis and have read there are concerns it might cause progression in CLL. Is anyone on an osteoanabolic with CLL? Ty

Need to start treatment for osteoporosis and have read there are concerns it mig...

Limelake

•2 days ago

17 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

•1 month ago

63 Replies

Adapt and keep moving forward

It can be so easy at times to get lost in all the adversity that comes from CLL, treatment and this life. I don't want to list all the hard, gut...

It can be so easy at times to get lost in all the adversity that comes from CLL,...

skipro

•11 days ago

35 Replies

Can you have two blood cancers?

Might be a silly question to ask but can you have two blood cancers? Eg. CLL and MZL?

Might be a silly question to ask but can you have two blood cancers? Eg. CLL and...

Redkatt

•8 days ago

29 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

•28 days ago

51 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

•13 days ago

35 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

•1 month ago

54 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

•1 month ago

55 Replies

Fatigue

Does anyone have any tips for managing fatigue - I find this overtakes my life daily, and if I do anything it can take me days, even a week, to recover!

Does anyone have any tips for managing fatigue - I find this overtakes my life d...

Alibaba26

•11 days ago

29 Replies

new to the site

was diagnosed with CLL just about a year ago but think it actually started in 2021. that is when my labs started showing increases in my white blood cells. i...

was diagnosed with CLL just about a year ago but think it actually started in 20...

pete-paz

•8 days ago

25 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

•23 days ago

40 Replies

Acalabrutinib, NYU, Columbia Presbyterian, and Dr. Nicole Lamanna

Good evening, Soon, I will start taking alacabrutinib (also known as Calquence), and NYU is overseeing my care. Could you please provide more information...

Good evening, Soon, I will start taking alacabrutinib (also known as Calquence)...

bagelstreet225

•7 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

•23 days ago

40 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

•1 month ago

48 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

•14 days ago

29 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

•12 days ago

26 Replies

CT scan Boney lesions, I have just had a CT scan and boney lesions have been detected on my pelvis and lower spine, is this CLL related.

diagnosed 9 years ago, my platelets have started to drop from 240 to 144 in the last 6 months or so. Also had a CT scan recently lots of lymph node’s...

diagnosed 9 years ago, my platelets have started to drop from 240 to 144 in the...

MrsB1963

•2 days ago

11 Replies

Starting treatment

I'm starting treatment today for CCL.The treatment is called Rituximam,has anyone out there had the treatment,I would like to here from you.Thanks John.

I'm starting treatment today for CCL.The treatment is called Rituximam,has anyon...

Jsceltic67

•2 days ago

9 Replies

Soursop

I’ve heard good things about soursop. Anyone else heard any first hand stories or tried it personally? “Another test-tube study looked at the effects of...

I’ve heard good things about soursop. Anyone else heard any first hand stories ...

Rando21

•11 days ago

22 Replies

Update day 6 - Treatment fir Richter’s Transformation

Finally had my stat MRI 24 hours after the reaction. In this hospital stat is anytime within 24 hours of order written. MRI did not show tissue swelling or...

Finally had my stat MRI 24 hours after the reaction. In this hospital stat is an...

ReneeSusan

•9 days ago

20 Replies

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