I was previously on imbruvica from r 1 1/2 years and had to stop due to side effects, I had developed AFIB among others. Came off for 2 years and restarted with Calquence now on for 1 1/2 years and it is not working any more!! My B Cell changed over to T Cell CLL and a host of other genetic changes! My Dr says I am an Enigma!
Fortunately for me he is also a Researcher so while my prognosis is poor I feel that I am in capable hands and I am his Partner in this journey we are on! I don’t expect to Win, however I feel good about our relationship and adding to the research data base!
I’m ok and quit resolved with my situation! It’s a Day to Day battle!
Last year was very hard for me! 2026 has so far been a good year despite the results of my blood work!
@mrgreentea
Thanks! Unfortunately though there is a wealth of info on the site, there was nothing about atypical CLL at cllsociety. That I could find anyway! I m starting a new thread to see if anyone else here has that dx.
I've learned a lot from reading everyone's posts and have a few questions. I was diagnosed with CLL ten years ago, asymptomatic until 2025 at which point I started getting serious infections. I see my oncologist/hematologist regularly, get IVIg infusions monthly. Feeling pretty good now. My question is about the flow cytometry and other tests mentioned diagnosing genetic markers--is it normal to have those? I have never had any genetic testing for CLL. Thanks!
I’ve been diagnosed 4 mo and the blood smear and flow cymetry were the first tests. Shows cell anomalies and classified as unmuted (bummer). But Petscan shows ok liver and spleen w low level lymph node activity even though enlarged. Lots of indicators and my WBC is level at 15 and AL at 9, so I’m just a wait and observe
I’ve been diagnosed 4 mo and the blood smear and flow cymetry were the first tests. Shows cell anomalies and classified as unmuted (bummer). But Petscan shows ok liver and spleen w low level lymph node activity even though enlarged. Lots of indicators and my WBC is level at 15 and AL at 9, so I’m just a wait and observe
Yes. I was diagnosed a few months ago. No treatment yet except what I am doing to build my immune system. At this point I’m fatigued and losing a lot weight.
Yes. I was diagnosed a few months ago. No treatment yet except what I am doing to build my immune system. At this point I’m fatigued and losing a lot weight.
@suzjlance
Fatigue goes hand and hand with CLL. At times I feel good if I can get dressed and make it to my recliner! Other days I am in the Garden for 10 minutes!
Weight Loss can also be symptomatic of CLL!
Are you having any other symptoms like lymph nodes swelling in neck, arms or else ware?
Treatment usually does not come around till you are symptomatic with multiple areas of involvement like swelling lymph nodes, Night sweats, poor blood work. These in combination usually result in beginning of treatment!
You need a good relationship with a Hematologist/Oncologist to follow and partner with!
There are only a handful of CLL only specialists in the world who only specialize in CLL!
But a good Hematologist/Oncologist will be able to help you on this journey!
I was diagnosed in Oct 2020 at 64 I’m now 70. Everyone of us is unique and different because of the genetics so it’s not a cookie cutter and treatment is individual in nature and based upon the Fish and Flow Cytometry results!
My results and prognosis is quite poor however many people don’t require treatment at all or for a very long time! Most fall into the latter group!
@suzjlance
Fatigue goes hand and hand with CLL. At times I feel good if I can get dressed and make it to my recliner! Other days I am in the Garden for 10 minutes!
Weight Loss can also be symptomatic of CLL!
Are you having any other symptoms like lymph nodes swelling in neck, arms or else ware?
Treatment usually does not come around till you are symptomatic with multiple areas of involvement like swelling lymph nodes, Night sweats, poor blood work. These in combination usually result in beginning of treatment!
You need a good relationship with a Hematologist/Oncologist to follow and partner with!
There are only a handful of CLL only specialists in the world who only specialize in CLL!
But a good Hematologist/Oncologist will be able to help you on this journey!
I was diagnosed in Oct 2020 at 64 I’m now 70. Everyone of us is unique and different because of the genetics so it’s not a cookie cutter and treatment is individual in nature and based upon the Fish and Flow Cytometry results!
My results and prognosis is quite poor however many people don’t require treatment at all or for a very long time! Most fall into the latter group!
@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4 years and diagnosed with CLL and LPL a few months ago. My first oncologist was not good so my primary doctor referred me to another one. He is much better and listens to me and educates me. I have lost 10 or more pounds and have fatigue but my lymph nodes don’t seem swollen. The back of my right knee is and I have blood clots. I’m going in for a venous ultrasound next week. No sweats. It’s hard but I walk almost every day and do yoga stretches. It helps a lot. They determined I have this from blood work and a bone biopsy.
@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4 years and diagnosed with CLL and LPL a few months ago. My first oncologist was not good so my primary doctor referred me to another one. He is much better and listens to me and educates me. I have lost 10 or more pounds and have fatigue but my lymph nodes don’t seem swollen. The back of my right knee is and I have blood clots. I’m going in for a venous ultrasound next week. No sweats. It’s hard but I walk almost every day and do yoga stretches. It helps a lot. They determined I have this from blood work and a bone biopsy.
@suzjlance
Nice to meet you!
With CLL being an active participant in your care is paramount to your Journey! Knowledge is key to understanding how this disease works! Understanding your genetic makeup and how it affects your Body helps you to make informed decisions on your overall care and health!
This CLL we share can not be controlled and eliminated, only altered and managed to a degree!
Unfortunately for us our genetic makeup decides what’s going to ultimately happen!
The best we can do is Live our best Lives daily! Hope that medicine helps keep the inevitable at bay for as long as possible!
Till there be a a cure, this is a life long process!
In the past 6 years they have made strides in medications for our use!
Car T therapy hold a promise but only a small percentage of patients reach MRD Minimal Residual Disease!
Bone Marrow replacement therapy yet that requires Chemo and potential set backs due to being Immunocompromised as we are already! Also ones over all health comes into play in the decision making process if it is even an option!
Infections are our worst enemies and we must be vigilant against them!
Like my Dr says, anything over 101 temp go to the ER period!!!!!
My Motto is Live,Love, and make the best of everyday one day at a time!
@suzjlance
Nice to meet you!
With CLL being an active participant in your care is paramount to your Journey! Knowledge is key to understanding how this disease works! Understanding your genetic makeup and how it affects your Body helps you to make informed decisions on your overall care and health!
This CLL we share can not be controlled and eliminated, only altered and managed to a degree!
Unfortunately for us our genetic makeup decides what’s going to ultimately happen!
The best we can do is Live our best Lives daily! Hope that medicine helps keep the inevitable at bay for as long as possible!
Till there be a a cure, this is a life long process!
In the past 6 years they have made strides in medications for our use!
Car T therapy hold a promise but only a small percentage of patients reach MRD Minimal Residual Disease!
Bone Marrow replacement therapy yet that requires Chemo and potential set backs due to being Immunocompromised as we are already! Also ones over all health comes into play in the decision making process if it is even an option!
Infections are our worst enemies and we must be vigilant against them!
Like my Dr says, anything over 101 temp go to the ER period!!!!!
My Motto is Live,Love, and make the best of everyday one day at a time!
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I was previously on imbruvica from r 1 1/2 years and had to stop due to side effects, I had developed AFIB among others. Came off for 2 years and restarted with Calquence now on for 1 1/2 years and it is not working any more!! My B Cell changed over to T Cell CLL and a host of other genetic changes! My Dr says I am an Enigma!
Fortunately for me he is also a Researcher so while my prognosis is poor I feel that I am in capable hands and I am his Partner in this journey we are on! I don’t expect to Win, however I feel good about our relationship and adding to the research data base!
I’m ok and quit resolved with my situation! It’s a Day to Day battle!
Last year was very hard for me! 2026 has so far been a good year despite the results of my blood work!
One day at a time adds up!!!!!!!! 😎
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Helpful -
Hug
4 Reactions@mrgreentea
Thanks! Unfortunately though there is a wealth of info on the site, there was nothing about atypical CLL at cllsociety. That I could find anyway! I m starting a new thread to see if anyone else here has that dx.
-
Like -
Helpful -
Hug
1 ReactionI've learned a lot from reading everyone's posts and have a few questions. I was diagnosed with CLL ten years ago, asymptomatic until 2025 at which point I started getting serious infections. I see my oncologist/hematologist regularly, get IVIg infusions monthly. Feeling pretty good now. My question is about the flow cytometry and other tests mentioned diagnosing genetic markers--is it normal to have those? I have never had any genetic testing for CLL. Thanks!
-
Like -
Helpful -
Hug
2 ReactionsI’ve been diagnosed 4 mo and the blood smear and flow cymetry were the first tests. Shows cell anomalies and classified as unmuted (bummer). But Petscan shows ok liver and spleen w low level lymph node activity even though enlarged. Lots of indicators and my WBC is level at 15 and AL at 9, so I’m just a wait and observe
-
Like -
Helpful -
Hug
3 Reactions@ppolockaz Check out information at CLL Society website and join a virtual support group. You’ll learn a lot and gain helpful insight from others.
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Hug
2 ReactionsYes. I was diagnosed a few months ago. No treatment yet except what I am doing to build my immune system. At this point I’m fatigued and losing a lot weight.
-
Like -
Helpful -
Hug
1 Reaction@suzjlance
Fatigue goes hand and hand with CLL. At times I feel good if I can get dressed and make it to my recliner! Other days I am in the Garden for 10 minutes!
Weight Loss can also be symptomatic of CLL!
Are you having any other symptoms like lymph nodes swelling in neck, arms or else ware?
Treatment usually does not come around till you are symptomatic with multiple areas of involvement like swelling lymph nodes, Night sweats, poor blood work. These in combination usually result in beginning of treatment!
You need a good relationship with a Hematologist/Oncologist to follow and partner with!
There are only a handful of CLL only specialists in the world who only specialize in CLL!
But a good Hematologist/Oncologist will be able to help you on this journey!
I was diagnosed in Oct 2020 at 64 I’m now 70. Everyone of us is unique and different because of the genetics so it’s not a cookie cutter and treatment is individual in nature and based upon the Fish and Flow Cytometry results!
My results and prognosis is quite poor however many people don’t require treatment at all or for a very long time! Most fall into the latter group!
Best wish’s
Cliff
-
Like -
Helpful -
Hug
5 Reactions@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4 years and diagnosed with CLL and LPL a few months ago. My first oncologist was not good so my primary doctor referred me to another one. He is much better and listens to me and educates me. I have lost 10 or more pounds and have fatigue but my lymph nodes don’t seem swollen. The back of my right knee is and I have blood clots. I’m going in for a venous ultrasound next week. No sweats. It’s hard but I walk almost every day and do yoga stretches. It helps a lot. They determined I have this from blood work and a bone biopsy.
@suzjlance
Nice to meet you!
With CLL being an active participant in your care is paramount to your Journey! Knowledge is key to understanding how this disease works! Understanding your genetic makeup and how it affects your Body helps you to make informed decisions on your overall care and health!
This CLL we share can not be controlled and eliminated, only altered and managed to a degree!
Unfortunately for us our genetic makeup decides what’s going to ultimately happen!
The best we can do is Live our best Lives daily! Hope that medicine helps keep the inevitable at bay for as long as possible!
Till there be a a cure, this is a life long process!
In the past 6 years they have made strides in medications for our use!
Car T therapy hold a promise but only a small percentage of patients reach MRD Minimal Residual Disease!
Bone Marrow replacement therapy yet that requires Chemo and potential set backs due to being Immunocompromised as we are already! Also ones over all health comes into play in the decision making process if it is even an option!
Infections are our worst enemies and we must be vigilant against them!
Like my Dr says, anything over 101 temp go to the ER period!!!!!
My Motto is Live,Love, and make the best of everyday one day at a time!
Best wish’s
Cliff
-
Like -
Helpful -
Hug
3 Reactions@hissteps4u Thank you so much for the info ❤️🌺🙏