Thanks for responding. My options are somewhat limited for oncologists in my area, but my doctor seems to have an excellent reputation and is very thorough.
From what I can tell, a few things might be prompting her to do the biopsy--the petechiae and weird rashes I've been getting since around the time I initially got bloodwork done, as well as anemia which has since resolved, and some bone joint pain, which hasn't been bad lately but was excruciating a few months ago (a big part of the reason I went to my GP in the first place). Perhaps she wants to rule out other infections or abnormalities?
The skin stuff in particular has just been weirding me out. I do have an appt. with a dermatologist (as my doctor recommended) next week. I do worry about something like leukemia cutis or something, but I'm still just trying to work through everything. If the biopsy will help to clarify anything, I have no problem having one.
My kids were also concerned until I got us all up to speed. There is a ton of information to learn, but fortunately so many great & reliable resources available.
I was dx'd May'24 @ 64. I went on drugs (Zanubrutinib) immediately. Both Mayo and UMN Med Center did biopsies, FISH, along with too many other tests to keep track of. As you have learned, or will hopefully soon learn, for most people it's something to live with... though unfortunately some people are impacted to a much greater degree.
There is a lot of support right here & out there for CLL and its variants. Staying healthy is a great idea, so kudoos for that! Happy to answer any questions if you have them.
Bone marrow biopsies are pretty rare these days; FISH test and other blood work gives sufficient information for a treatment plan, which is often simply watching for disease progression. Hopefully you are getting competent medical advice. If it's available to you, make an appointment with a CLL expert. Check out the CLL Society website, where many are listed.
Thanks for responding. My options are somewhat limited for oncologists in my area, but my doctor seems to have an excellent reputation and is very thorough.
From what I can tell, a few things might be prompting her to do the biopsy--the petechiae and weird rashes I've been getting since around the time I initially got bloodwork done, as well as anemia which has since resolved, and some bone joint pain, which hasn't been bad lately but was excruciating a few months ago (a big part of the reason I went to my GP in the first place). Perhaps she wants to rule out other infections or abnormalities?
The skin stuff in particular has just been weirding me out. I do have an appt. with a dermatologist (as my doctor recommended) next week. I do worry about something like leukemia cutis or something, but I'm still just trying to work through everything. If the biopsy will help to clarify anything, I have no problem having one.
My doctor just told me yesterday that I have CLL, Stage 0. This came after months of bizarre lab results, and an abdominal ultrasound on which everything was "unremarkable," fortunately. I'm 64, and pretty much never get sick (even the last time I got Covid, I only found out because my son had it so I took my temp. and it was slightly high). I'm waiting to be scheduled for a bone marrow biopsy.
I've been working out regularly for about a year, and this gives me even more incentive because I want to be strong and not have to rely on others to do stuff for me if this progresses. My diet is very healthy. My doctor said I shouldn't drink alcohol at all, but I think I'll stick with one glass of wine a day, because it's something I enjoy, and I've read that moderate (1 drink a day for women) drinking is more or less okay. I'm not ready to live like a monk yet!
My only concern is some skin issues--rashes on my hands, arms, and chest, and what appear to be petechiae on my belly and legs. I'm seeing a dermatologist next week.
Oddly, I'm not really freaked out. I just don't want my son (he's 26 and we're close) to be worried.
So that was my introduction. 🙂 I'll probably be "around" here to ask questions and chat with others going through similar things.
Bone marrow biopsies are pretty rare these days; FISH test and other blood work gives sufficient information for a treatment plan, which is often simply watching for disease progression. Hopefully you are getting competent medical advice. If it's available to you, make an appointment with a CLL expert. Check out the CLL Society website, where many are listed.
My doctor just told me yesterday that I have CLL, Stage 0. This came after months of bizarre lab results, and an abdominal ultrasound on which everything was "unremarkable," fortunately. I'm 64, and pretty much never get sick (even the last time I got Covid, I only found out because my son had it so I took my temp. and it was slightly high). I'm waiting to be scheduled for a bone marrow biopsy.
I've been working out regularly for about a year, and this gives me even more incentive because I want to be strong and not have to rely on others to do stuff for me if this progresses. My diet is very healthy. My doctor said I shouldn't drink alcohol at all, but I think I'll stick with one glass of wine a day, because it's something I enjoy, and I've read that moderate (1 drink a day for women) drinking is more or less okay. I'm not ready to live like a monk yet!
My only concern is some skin issues--rashes on my hands, arms, and chest, and what appear to be petechiae on my belly and legs. I'm seeing a dermatologist next week.
Oddly, I'm not really freaked out. I just don't want my son (he's 26 and we're close) to be worried.
So that was my introduction. 🙂 I'll probably be "around" here to ask questions and chat with others going through similar things.
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
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 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!
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!
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).
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
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Hi @nancybev
My kids were also concerned until I got us all up to speed. There is a ton of information to learn, but fortunately so many great & reliable resources available.
I was dx'd May'24 @ 64. I went on drugs (Zanubrutinib) immediately. Both Mayo and UMN Med Center did biopsies, FISH, along with too many other tests to keep track of. As you have learned, or will hopefully soon learn, for most people it's something to live with... though unfortunately some people are impacted to a much greater degree.
There is a lot of support right here & out there for CLL and its variants. Staying healthy is a great idea, so kudoos for that! Happy to answer any questions if you have them.
-
Like -
Helpful -
Hug
2 ReactionsThanks for responding. My options are somewhat limited for oncologists in my area, but my doctor seems to have an excellent reputation and is very thorough.
From what I can tell, a few things might be prompting her to do the biopsy--the petechiae and weird rashes I've been getting since around the time I initially got bloodwork done, as well as anemia which has since resolved, and some bone joint pain, which hasn't been bad lately but was excruciating a few months ago (a big part of the reason I went to my GP in the first place). Perhaps she wants to rule out other infections or abnormalities?
The skin stuff in particular has just been weirding me out. I do have an appt. with a dermatologist (as my doctor recommended) next week. I do worry about something like leukemia cutis or something, but I'm still just trying to work through everything. If the biopsy will help to clarify anything, I have no problem having one.
Bone marrow biopsies are pretty rare these days; FISH test and other blood work gives sufficient information for a treatment plan, which is often simply watching for disease progression. Hopefully you are getting competent medical advice. If it's available to you, make an appointment with a CLL expert. Check out the CLL Society website, where many are listed.
-
Like -
Helpful -
Hug
2 ReactionsMy doctor just told me yesterday that I have CLL, Stage 0. This came after months of bizarre lab results, and an abdominal ultrasound on which everything was "unremarkable," fortunately. I'm 64, and pretty much never get sick (even the last time I got Covid, I only found out because my son had it so I took my temp. and it was slightly high). I'm waiting to be scheduled for a bone marrow biopsy.
I've been working out regularly for about a year, and this gives me even more incentive because I want to be strong and not have to rely on others to do stuff for me if this progresses. My diet is very healthy. My doctor said I shouldn't drink alcohol at all, but I think I'll stick with one glass of wine a day, because it's something I enjoy, and I've read that moderate (1 drink a day for women) drinking is more or less okay. I'm not ready to live like a monk yet!
My only concern is some skin issues--rashes on my hands, arms, and chest, and what appear to be petechiae on my belly and legs. I'm seeing a dermatologist next week.
Oddly, I'm not really freaked out. I just don't want my son (he's 26 and we're close) to be worried.
So that was my introduction. 🙂 I'll probably be "around" here to ask questions and chat with others going through similar things.
-
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 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 ReactionHi 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 ReactionsI 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!
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Like -
Helpful -
Hug
3 ReactionsInfections, 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).
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
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Like -
Helpful -
Hug
1 Reaction