Good morning. Well maybe a coincidence but both of my grandfathers had leukemia and died from it and I do not have any information as to what kind of leukemia, nor do I know if they distinguished the differences back then.
I was diagnosed in December 2021 with cll, started treatment in April 2024. Now my brother in Australia who is 61 has been diagnosed.
So, is it genetic? It does make me worry for my children.
Hi @marytheresacll. Worrying about our children is a chronic disease! I think we parents all suffer from that one. We tend to worry about things that haven’t yet happened or might not ever occur.
After reading through several articles on CLL, to see if it’s an inherited disease, here’s an excerpt from Healthline.com:
“Genes passed through families seem to contribute to chronic lymphocytic leukemia (CLL) development. Although a family history increases your risk, most people with this history don’t develop CLL.” “Inherited mutations are rarely thought to cause CLL. Genetic changes linked to CLL usually occur during your lifetime.” https://www.healthline.com/health/cll/is-cll-hereditary
So I guess there’s a slightly elevated risk level but it’s not a certainty that any of your children will develop CLL. Keeping in mind they inherited 2 sets of genes. ☺️
What your children can do is to have routine blood work, such as a CBC with differential, to act as a baseline. Then subsequent results can be compared to watch for trends in numbers. There’s also genetic testing if they want to go to those lengths.
But the bottom line is, none of us can predict the future and worrying about ‘what ifs’ will just rob us of precious time.
Good morning. Well maybe a coincidence but both of my grandfathers had leukemia and died from it and I do not have any information as to what kind of leukemia, nor do I know if they distinguished the differences back then.
I was diagnosed in December 2021 with cll, started treatment in April 2024. Now my brother in Australia who is 61 has been diagnosed.
So, is it genetic? It does make me worry for my children.
My maternal grandmother died of leukemia at age 58 when I was two years old, but I have no idea what type. So that's been a question in the back of my mind.
Is it normal for colds and infections to take longer to get past? I haven’t started any type of treatment - find out in two weeks if it’s a start or hold and see. But man, I’ve had a sinus infection for three weeks now. Not just a cold but antibiotics for three weeks trying to get over this?
Just trying to learn what’s normal and attributable- seems like the three months between appointments digs up lots of unknowns and questions.
Tim
Is it normal for colds and infections to take longer to get past? I haven’t started any type of treatment - find out in two weeks if it’s a start or hold and see. But man, I’ve had a sinus infection for three weeks now. Not just a cold but antibiotics for three weeks trying to get over this?
Just trying to learn what’s normal and attributable- seems like the three months between appointments digs up lots of unknowns and questions.
Tim
Tim, I have had CLL for 12 years ( I am 82) and it was diagnosed due to repeated pneumonia and sinus infections. White blood cells key to recovering from infections. I have had minimal treatment - did take immunoglobulin infusions monthly for a while to boost immune system. I have lived with minimal CLL intrusion into my life. Hope you get answers to your questions.
Tim, I have had CLL for 12 years ( I am 82) and it was diagnosed due to repeated pneumonia and sinus infections. White blood cells key to recovering from infections. I have had minimal treatment - did take immunoglobulin infusions monthly for a while to boost immune system. I have lived with minimal CLL intrusion into my life. Hope you get answers to your questions.
Thanks for the reply. Mine was found in a one off test while I was hospitalized for something else. It’s only been 4 months now since diagnosis and I’m still learning about what effects this has. Thank you so much for taking the time to reply. I really appreciate everyone’s “community spirit” and patience. Hope you are doing ok.
Tim
Is it normal for colds and infections to take longer to get past? I haven’t started any type of treatment - find out in two weeks if it’s a start or hold and see. But man, I’ve had a sinus infection for three weeks now. Not just a cold but antibiotics for three weeks trying to get over this?
Just trying to learn what’s normal and attributable- seems like the three months between appointments digs up lots of unknowns and questions.
Tim
Infections, especially sinus infections, are common because anyone with CLL has a weakened immune system. See an ENT doctor who understands CLL (I have one at Mayo). Also discuss with a CLL expert. I use twice daily NeilMed nasal rinse with prescribed steroid and antibiotic—completely controls the sinus infections. If your immunoglobulin IGg level is low, you could benefit from IVIG infusions (I receive one every three months).
I was diagnosed with CLL when I was in the midst of 8 months of sinus infections. Two weeks after getting off an antibiotic, I had another infection. I was on antibiotics for MONTHS. After my routine blood tests, my PCP sent me to a hematologist/oncologist who diagnosed CLL and decided that my repeated infections were because of that. Like minnesotajim, I also receive IVIG infusions (mine are every 4 weeks), but I think they will end soon. I was certain that my elevated white blood cells were due to the sinus infections. However, the oncologist thinks that the CLL caused the sinus infections. Since my sinus surgery and the IVIG infusions, I have not had any sinus infections for months. Good luck!
Hi I am new to this and I just saw on some doctor's papers that I have CLL. Am due to go to hematologist in November but can anyone give some heads up what I can do to help myself before then? I honestly am in the dark. I have read some information but am having difficulty understanding it!
Hi I am new to this and I just saw on some doctor's papers that I have CLL. Am due to go to hematologist in November but can anyone give some heads up what I can do to help myself before then? I honestly am in the dark. I have read some information but am having difficulty understanding it!
Hi @mcconachie Welcome to Connect. I’m sure your mind is racing with questions after having learned that you may have CLL but no explanations forthcoming until a couple of months from now!
There are several members in Connect who have CLL, some newbies such as yourself and others have had this chronic form of Luekemia for many years. It’s generally slowly developing and from my understanding, remains one of the more treatable forms of leukemia.
I found a reply that I made to another member a few months ago. It’s filled with quite a few useful references that you might find helpful. Here’s the link: https://connect.mayoclinic.org/comment/1277732/
Were you having symptoms that led up to your diagnosis or was this found with routine labs from a physical?
Hi @mcconachie Welcome to Connect. I’m sure your mind is racing with questions after having learned that you may have CLL but no explanations forthcoming until a couple of months from now!
There are several members in Connect who have CLL, some newbies such as yourself and others have had this chronic form of Luekemia for many years. It’s generally slowly developing and from my understanding, remains one of the more treatable forms of leukemia.
I found a reply that I made to another member a few months ago. It’s filled with quite a few useful references that you might find helpful. Here’s the link: https://connect.mayoclinic.org/comment/1277732/
Were you having symptoms that led up to your diagnosis or was this found with routine labs from a physical?
Did I have symptoms NO. But approximately 3 years ago at my VET’s physical I was told that my white blood cell count was rather high. After further oncology visits it was confirmed that I had CLL. Since then I have had 2 units of blood and 4 infusions of ribiaux (sp?) and all blood tests since then have been good. All one can do is follow your Doctor’s instructions. She told me I’m ok but also told me once a person has CLL one has it most likely for life. So I am trying and I think successful
in keeping a positive attitude which at times is difficult. I am 77 lived a very full life and just deal with my CLL. My advice/suggestion keep your head up and go on living life.
Butch
Connect
Connect
Like
Helpful
Hug
Hi @marytheresacll. Worrying about our children is a chronic disease! I think we parents all suffer from that one. We tend to worry about things that haven’t yet happened or might not ever occur.
After reading through several articles on CLL, to see if it’s an inherited disease, here’s an excerpt from Healthline.com:
“Genes passed through families seem to contribute to chronic lymphocytic leukemia (CLL) development. Although a family history increases your risk, most people with this history don’t develop CLL.” “Inherited mutations are rarely thought to cause CLL. Genetic changes linked to CLL usually occur during your lifetime.”
https://www.healthline.com/health/cll/is-cll-hereditary
So I guess there’s a slightly elevated risk level but it’s not a certainty that any of your children will develop CLL. Keeping in mind they inherited 2 sets of genes. ☺️
What your children can do is to have routine blood work, such as a CBC with differential, to act as a baseline. Then subsequent results can be compared to watch for trends in numbers. There’s also genetic testing if they want to go to those lengths.
But the bottom line is, none of us can predict the future and worrying about ‘what ifs’ will just rob us of precious time.
My maternal grandmother died of leukemia at age 58 when I was two years old, but I have no idea what type. So that's been a question in the back of my mind.
Is it normal for colds and infections to take longer to get past? I haven’t started any type of treatment - find out in two weeks if it’s a start or hold and see. But man, I’ve had a sinus infection for three weeks now. Not just a cold but antibiotics for three weeks trying to get over this?
Just trying to learn what’s normal and attributable- seems like the three months between appointments digs up lots of unknowns and questions.
Tim
Tim, I have had CLL for 12 years ( I am 82) and it was diagnosed due to repeated pneumonia and sinus infections. White blood cells key to recovering from infections. I have had minimal treatment - did take immunoglobulin infusions monthly for a while to boost immune system. I have lived with minimal CLL intrusion into my life. Hope you get answers to your questions.
-
Like -
Helpful -
Hug
5 ReactionsThanks for the reply. Mine was found in a one off test while I was hospitalized for something else. It’s only been 4 months now since diagnosis and I’m still learning about what effects this has. Thank you so much for taking the time to reply. I really appreciate everyone’s “community spirit” and patience. Hope you are doing ok.
Tim
-
Like -
Helpful -
Hug
1 ReactionInfections, especially sinus infections, are common because anyone with CLL has a weakened immune system. See an ENT doctor who understands CLL (I have one at Mayo). Also discuss with a CLL expert. I use twice daily NeilMed nasal rinse with prescribed steroid and antibiotic—completely controls the sinus infections. If your immunoglobulin IGg level is low, you could benefit from IVIG infusions (I receive one every three months).
I was diagnosed with CLL when I was in the midst of 8 months of sinus infections. Two weeks after getting off an antibiotic, I had another infection. I was on antibiotics for MONTHS. After my routine blood tests, my PCP sent me to a hematologist/oncologist who diagnosed CLL and decided that my repeated infections were because of that. Like minnesotajim, I also receive IVIG infusions (mine are every 4 weeks), but I think they will end soon. I was certain that my elevated white blood cells were due to the sinus infections. However, the oncologist thinks that the CLL caused the sinus infections. Since my sinus surgery and the IVIG infusions, I have not had any sinus infections for months. Good luck!
-
Like -
Helpful -
Hug
3 ReactionsHi I am new to this and I just saw on some doctor's papers that I have CLL. Am due to go to hematologist in November but can anyone give some heads up what I can do to help myself before then? I honestly am in the dark. I have read some information but am having difficulty understanding it!
-
Like -
Helpful -
Hug
2 ReactionsHi @mcconachie Welcome to Connect. I’m sure your mind is racing with questions after having learned that you may have CLL but no explanations forthcoming until a couple of months from now!
There are several members in Connect who have CLL, some newbies such as yourself and others have had this chronic form of Luekemia for many years. It’s generally slowly developing and from my understanding, remains one of the more treatable forms of leukemia.
I found a reply that I made to another member a few months ago. It’s filled with quite a few useful references that you might find helpful. Here’s the link:
https://connect.mayoclinic.org/comment/1277732/
Were you having symptoms that led up to your diagnosis or was this found with routine labs from a physical?
-
Like -
Helpful -
Hug
1 ReactionDid I have symptoms NO. But approximately 3 years ago at my VET’s physical I was told that my white blood cell count was rather high. After further oncology visits it was confirmed that I had CLL. Since then I have had 2 units of blood and 4 infusions of ribiaux (sp?) and all blood tests since then have been good. All one can do is follow your Doctor’s instructions. She told me I’m ok but also told me once a person has CLL one has it most likely for life. So I am trying and I think successful
in keeping a positive attitude which at times is difficult. I am 77 lived a very full life and just deal with my CLL. My advice/suggestion keep your head up and go on living life.
Butch
-
Like -
Helpful -
Hug
6 Reactions