It's my understanding that in Canada karyotyping is "NGI" (Not Generally Indicated). Perhaps it wouldn't change treatment decisions, so they don't normally do it. However, it seems like it might be good to know to understand prognosis. I'm thinking it's a test I would like to have.

My father (54 years old, from India) was diagnosed with CLL about 3 months ago. Currently he is on watch and wait.

Here are his details:

Only abnormality: del 13q (in 95% cells)

CD49d negative, CD38 negative

IGHV status not known yet

Hemoglobin 13.8, Platelets 100K

LDH normal, beta-2 microglobulin 2.8

No B symptoms (no fever, night sweats, or weight loss)

Multiple enlarged lymph nodes on PET CT, largest ~2.9 cm

Otherwise 100% fit and healthy

Doctor has given 2 vaccination to avoid flu and pneumonia.

My questions:

1. With these markers (del13q only, CD49d−, CD38−), how favorable is the prognosis?

2. Does the high percentage of 13q deletion (95%) make the disease more aggressive, even though it’s the “good” abnormality?

3. Since he has no symptoms right now, how many years do patients typically stay on watch and wait in this situation?

4. Any lifestyle or monitoring tips from those with similar profiles?

5. What life expectancy can we expect for him ?

6. Is it highly manageable desease?

Thanks in advance for sharing your experiences 🙏

Oncologist said he’s less worried about airborne illness and more concerned about germs through contact. I’m 5 weeks into V+O so I’m still fighting fatigue and don’t want to get sick.

Do I wear a mask to church? Do I wear a mask to the store? What’s the crowd size I should be worried about? I live in a pretty small town and work mostly from home.

I tried a few minutes last week at church and spent the last half of church in the car because I could only focus on people coughing.

I’m 2 weeks in to my full dose of Venetoclax and have noticed daily GI issues and a much more sensitive stomach. Anybody have any success remedying this??

My mother was diagnosed with cll 2-3 years ago. It was during a routine checkup for osteoporosis, she is 64, single and I’m the only child who lives close. We just had her annual bloodwork done and a conversation at the hospital. Her numbers look good, they are quite low and are increasing very slowly so far from having treatment yet. She has complained of being tired and the hospital say that’s normal. The last couple of months she has had sudden bouts of nausea where she gets anxious and then throws up. Her doctor said her numbers are slow so I probably isn’t the cancer but maybe anxiety. He also checked her lymph nodes because she was scared they were enlarged and she always feels them everyday, but the doc said they felt normal. She was also checked for a lump in the chest, but the doctor couldn’t feel anything - I just had a lump which I had removed so i don’t know if that made her a bit more nervous. She is a quite anxious person and after the diagnosis, it has gotten worse.

Tonight she asked me to feel her lymph nodes, but they feel fine - I have an auto immune disorder and deal with swollen lymph nodes and said she isn’t in doubt if they suddenly start to swell, but it doesn’t really help. I tried talking to her tonight about maybe looking for a psychologist or hear the hospital if they offer that, and she got quite defensive and said “if it even is psychological, what if there is something else wrong?” I’m not sure where to go from here? She is not up for going many places because “what if I get sick or nauseas?”

I’ve had anxiety my whole life, including a bad bout of health anxiety and the thoughts she has are the same I dealt with - but again i didn’t have cancer so I’m not sure what to say or do?

Any wise thoughts on this? I want to support her and do the best for her

Hi! I’ve been down an Internet rabbit hole all day which I know isn’t good but here I am. I recently had some bloodwork done and am concerned about some results. This was just routine blood work with a new doctor. No symptoms.

31F, overweight, pre-diabetic. No recent illnesses.

Screenshots from most recent labs.

WBC: 10.5 Absolute Lymphocytes: 4158 Lymphocytes %: 39.6

My last labs were run in May 2024 and my WBC was 9.5. Lymphocytes were not checked at this time.

Previously, I had not had labs done since 2020 when I was pregnant but these were the results.

WBC: 12.5 Absolute Lymphocytes: 2700 Lymphocytes %: 21.6

My most recent blood work shows potential slight anemia too?

This jump from 2020 to now has me freaked. I have a follow-up with my doctor next week but looking to calm my brain down for time being.

Thanks for any advice!

Olá a todos! Sabem me dizer se há relato do Calquence causar uma leve coriza persistente sem qualquer outro sintoma de resfriado ou gripe?

My Mom was recently diagnosed with CLL. She is 79 & has some other health problems including diabetes, high cholesterol, & hbp. Her inital dr had a CT scan done last month, which showed fluid in her abdomen and and enlarge liver. He said it is cirrhosis from having fatty liver and diabetes. He also told her that he was not worried about the CCL that it was in the pre stages and was more worried about her liver. That dr has since left the office and she has been transferred to his colleague. The new dr is worried about the CCL, wants her to undergo treatment, additional blood work, CT scan and a bone marrow biopsy. He would like for a gastro to look into the liver as he does not feel that he is the best to make that diagnosis.

Yesterday we had her treatment class and scheduling. The will be placing her on 3 medications. Calquence, Guhzyvuh and another that I do not know the name of yet. The nurse has me very worried over the possible side effect and possible worsening of her current symptoms.

As of now her treatment plan will consist of daily medication(s) and an IV of something at the center's office. She will go through seven "cycles" of treatment, with the first being 4 treatments in month 1, then 1 treatment per month for the remainder. Is this standard? During the class the nurse said it would be 4 treatments per month, then at scheduling it changed to the 4, then 1.

There is a possibility that the treatment plan will change depending on her bone marrow biopsy results and her monthly labs once treatment starts. Unfortunately that part is a waiting game.

In a nutshell: At this point I am very confused. It has been like a roller coaster of revolving doors. Yes worry, no don't worry, etc.

Has anyone had a similar experience? Does anyone have any experience with these medications? Is the 4 then dropping to 1 treatment per month fairly common/standard? I know all medications can affect an individual differently. My mind is going 90 mph right now with anxiety.

Sorry, I'm actually not worried about this, but my wife is. I'm planning a week long wilderness trip on a river with a reasonably well organized park ranger service. Sure, my spleen is enlarged, so are my lymph nodes. But after a summer of fairly intensive treatment, I feel great. How do you deal with overprotective loved ones?

Hi all I'm not sure if you all remember a post about she just joined a study and she history buy her own.

I would love to find her so I can help her out. Thank you..I have cll also.

I get that a lot as a person with CLL and it is true. I look healthy, even when I was getting sick, losing weight and had some fairly large lymph nodes. You couldn’t tell that I have cancer, but I have cancer and you can certainly die from it. I just get the feeling sometimes that people think I am lying. Hardly anyone I know has actually heard of CLL.

Hey all,

So happy I found this group, reading through has helped a lot already.

Just looking for some advice/opinions.

I’m waiting a month for an appointment with oncology/hematology and no doctor will talk with me until then other than my primary care.

My WBC is 14.5 and my Lymphocyte Absolute is 9.3, although they’ve come down like a couple points they’ve been this way for a month. I also have some non painful swollen lymph nodes in my groin. My primary care is suspicious of CLL. He gave me an urgent referral to oncology/hematology but they disagree it’s urgent so I can’t get in for a month.

So basically I’m freaking out here for the next month that I have cancer. Just looking for thoughts, advice, anything.

I’m otherwise healthy, 45, super active and workout almost everyday. I’m a big mountain biker, whitewater kayaker, surfer and skier.

I’m curious if your care team acknowledges, measures or discusses your enlarged lymph nodes? My hematologist doesn’t seem to acknowledge them much and nor do we discuss them. (Been diagnosed for about 10 months and W&W). I have an appointment coming up in a week and I feel like I have noticed several new (?) ones in my neck. I haven’t been sick or stressed so it’s a little curious.

Also, at what point in your dx did you seek out a specialist?

I have a question regarding secondary malignancies in CLL patients. I have read multiple studies and sources (Mayo Clinic, MD Anderson, SEER database, Nature, PMC) and noticed that the reported risk percentages vary : some report around 18–20%, while others suggest 36–50% of CLL patients develop secondary cancers.

Hello all. Sadly, my father passed away from complications of CLL a few days ago. It happened so fast and I’m still in shock/denial. He was diagnosed 21 years ago, but had never had any problems or required any treatments. He last saw his oncologist about six months ago where he was, yet again, given the “all clear” based on bloodwork and a few other criteria. It was business as usual for him and we thought nothing of it.

Well, just over a week ago, he started feeling ill with what he thought was a routine “stomach bug.” Unfortunately, whatever infection he had escalated into sepsis, which ultimately triggered pneumonia and severe damage to multiple internal organs. In the end, there was nothing the hospital could do to turn things around. His official cause of death is “Renal Failure as a result of underlying CLL.”

My father’s oncologist said biopsies and spinal taps that were run at the hospital all came back normal so he said that there was no active cancer or notable flare-up of the CLL. The oncologist believes CLL generally weakened my father’s immune system to a point where a routine infection simply overwhelmed his body.

I guess my question is if this makes sense as an explanation? And wouldn’t there have seemingly been any way to catch this at his last appointment with the oncologist? Finally, does anybody know if this fast of a decline is typical? I mean, my father went 21 years of living with CLL without any issue to passing away in less than a week after feeling sick.

I’m clearly still in denial, and really wishing I could’ve gotten a more tangible or specific explanation of what happened. I also can’t help but wonder if they HAD found something six months ago, could any of these newer CLL drugs have prevented (or at least delayed) this?

I really, really would appreciate any insight and/or kind words as I’m really struggling with accepting (or even understanding) what happened. Thank you.

Edit to add my father had just turned 70 and had no other underlying health issues. It just seems he was quite young and otherwise healthy for this to have happened so abruptly.

What percentage of CLL patients develop AML, ALLin their lifetime?

Any data available ?????

What is the percentage of risk associated with CLL patients for secondary cancer like skin, aml, solid tumors etc ??

Some research says it's 25-30% is it true??

Please reply if you read this...

54 years age indian, diagnosed 3 months before..on wait and watch

Only single abnormality del 13 q in 95% cells,

Cd 49d negetive, cd 38 negetive

LDH normal, beta2 microglunlin 2.8

No any b symptoms

Multiple enlarged lymph nodes detected in pet ct, maximum size 2.9 cm

No any problem, 100% fit

My question are :

What would be minimum watch and wait.. period in years or time to first tretment?

What life expectancy can we expect because she is 54 only?

What are the best medicine available for her?

What are the future risk for aml, all and other secondary malignancy?

I (46m) was diagnosed 3 years ago. I basically hover below 20k wbc. What is the longest folks have been on w&w? I know some people are never treated but I assumed that was the older population who pass away from other issues.

I have CLL. I went from watch and wait to having to start treatment within the year. I take zanubrutinib pills https://www.brukinsa.com/cll/?&msclkid=20e0b79d0c851dc989bbdf0bd19fd840&utm_source=bing&utm_medium=cpc&utm_campaign=%7CCN%7CDTCB%7CBR%7CAGNOSTIC%7CBRUK%7CBEIG%7CCore%7CBS&utm_term=brukinsa&utm_content=General%20Homepage%7CTXT%7CNational%7CA%3AA%7C1%7CPH&gclid=20e0b79d0c851dc989bbdf0bd19fd840&gclsrc=3p.ds&gad_source=7

And infusions of Tafastamab. My iron is depleted, and my immunoglobulin is way low (getting infusions for both). Now my testosterone has fallen from the high 600's to below 200. Have any men also had lower T due to the treatments?

PS The treatments are working. All my lymph nodes had returned to normal size, and my WBC went from a high of 100 to 17 last week to 14 yesterday.

Hi everyone, I’m here on behalf of my mom (65 y/o). Her recent bloodwork showed a WBC of 11.3 with absolute lymphocytes of 5255 and absolute monocytes of 1006. Her WBC 2 months ago was 10.9, which is why doctor is conserned of the consistent increase. Her hemoglobin and platelets are normal. The hematologist referral form mentioned evaluation for leukocytosis/possible CLL.

For those who have been through this — do these numbers look like what you saw when first diagnosed with CLL, or could this still be something reactive/benign?

We’re waiting to see hematology, but I’d appreciate hearing your experiences to get a sense of what to expect

I have a question was any one else charged my Medicare for treatment for cancer that was caused by round up. My mother died from this and we had to pay Medicare $48,000.00. Why is what I need to know. She paid her premium every month. Even her extra health insurance she made all the payments so why take the money from us.