One problem I had not anticipated is educating medical professionals about our watchful waiting approach. I had to go to the ER last night, another issue not associated with CLL, and was asked by the nurse and doctor if I was being treated. This ER has all of my medical records which includes medication taken. Granted they did want to check on that important issue.
Yesterday, I wet to my acupuncturist, who can’t treat my cancer or he’ll lose his license. However, he could deal with my fatigue and nausea, which he thinks is being caused by a small ulcer. For the first time in weeks, I was able to have a 2.5 mph walk without feeling crappy after and help with kitchen chores after dinner.
My body responds to acupuncture. Unfortunately, Kaiser only allows it for chronic pain, so I have to pay out of pocket. I couldn’t understand why I was feeling crappy, if I was supposedly “asymptomatic.” That and not being diagnosed at Stage 0, even though I had my physical last year, had me reliving the nightmare I lived through nine years of not being diagnosed with hyperparathyroidism. I feel much calmer now, though not happy about this new expense at tax paying time, and just here to document what is calming me down and helping me to get back to my regular routines. I know acupuncture doesn’t work for everyone, but find what does work for you and go for it! I’m at Stage 1 today but I’m hopeful now.
I was diagnosed on Monday with CLL. It is Stage 0 and detected during blood test at annual physical. I’m stage 0 and have no symptoms. I feel fortunate; even though having cancer isn’t great news, it helps me to prioritize my life at 64 years old. Many thanks for this forum and all of you who help ease the burden of this event. It has been a source of great comfort for me.
God Bless and stay strong.
The difference is that before, I ignored people when they said I pushed myself too hard. I didn’t listen to the fatigue or them. Now, my question to those of you who have been dealing with this for a while, does it make a difference to rest or is there no telling what causes the stages to advance?
Adequate sleep is needed for your bone marrow make to make efficient blood cells. Sleep is reparative and healing for blood cells and it helps your immune system stay strong. After I absorbed the shock of feeling healthy and then being told I needed a bone marrow biopsy to confirm that my routine blood work showed CLL I went through about a month of depression and felt lethargic. That was not because of my elevated white count. I was going through the classic phases of coming to terms with the new me, a person with cancer. A supposedly incurable cancer. Yet 25 years later, without treatment my CLL for the last 15 years has regressed back inside my bone marrow and my blood is perfect, even the lymphocytes are in the normal range. Regression is not considered a cure. Kind of like herpes, it can go dormant and reappear. After my initial depression I accepted my new reality as a cancer victim and began attacking life with a gusto not wanting to waste a moment on it. I took an early retirement. I didn't feel the need to rest or take naps even if physically tired from my obsessive home and community gardening projects. All that lead to a good nights sleep.
However if my CLL had advanced and I felt tired or sleepy during the day and doctor's told me to slow down and rest during the day I'd follow their advice and try to enjoy my napping.
For many years, we have had the mindset of early detection/early treatment for cancer instilled in us. For many cancers that is true but is not for CLL, yet we fall into that trap. It can be hard for us and our families to take a giant step back from that conditioning. With luck, we may never need treatment or only on a limited basis. That is so in opposition to what we have been conditioned to think.
Colleen Young, Connect Director | @colleenyoung | Apr 15, 2025
@hikerny, I hope you've been following all the responses to your call for finding others who have been diagnosed with chronic lymphocytic leukemia (CLL).
I look forward to hearing more about your journey. When were you diagnosed with CLL? Is this a new diagnosis? Will you be having treatment? How are you doing?
Thank you I have CLL and the Oncologist spent an hour explaining that I’m ok and not to worry as it is slow growing and need no medication etc..will check my blood work and keep a watch on me…
I know how you are helping me and others do I thank you !
Pat Lepkowicz
Good morning, Pat. Your doctor sounds like a ‘keeper’! It makes such a difference when you have a doctor who takes the time to explain the situation, answers questions and gives reassurance that you’re on their radar should something pop up. My oncologists/hematologists are like that too. I think their understanding and concern gives us the sense that we’re free to move forward, to enjoy our lives and to not focus on the diagnosis. We’ll be taken care of ‘if’ anything needs tending in the future.
Are you still feeling experiencing the chills you were having?
Welcome to Connect, @jerseyjim13. I think most everyone worries about developing the big “C” at some point in time, me included. CLL, chronic lymphocytic leukemia, statistically remains one of the more treatable forms of cancer. As you’ve already found, many people who develop CLL don’t require treatment for several years and when/if they do, treatments have a high rate of success.
Very well health.com https://www.verywellhealth.com/cll-prognosis-5211991
Hopefully you’ve read through some of the positive comments in this current discussion you’re following. More conversations can be found by typing in CLL in the top search bar. I’d posted this comment a couple days ago to newly diagnosed CLL member @hikerny. It’s filled with other links for information and discussion topic. https://connect.mayoclinic.org/comment/1277732/
As for worrying about the future?! Whether we have cancer or not, none of us can know what our future holds. So make the best of every day that you’re on the planet and try not to dwell on ‘what if’ thoughts.
One of my favorite quotes (unknown author):
Fear does not stop death. It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.
So try to focus on enjoying your life and living each day to the fullest. ☺️
How frequently will you be having lab work?
Thank you I have CLL and the Oncologist spent an hour explaining that I’m ok and not to worry as it is slow growing and need no medication etc..will check my blood work and keep a watch on me…
I know how you are helping me and others do I thank you !
Pat Lepkowicz
It is highly possible that I misread this abstract. I will let you read it yourself and see if you draw the same conclusion that I had. https://pubmed.ncbi.nlm.nih.gov/32407752/
I was just diagnosed on Tuesday, 4 days ago. The big "C" has always been a fear of mine and now I have to worry about the possibility of increasing cancer in other organs. Now that really scares me even though CLL is at the early stage and needs no treatment at this time. That means I have to worry about the future.
Welcome to Connect, @jerseyjim13. I think most everyone worries about developing the big “C” at some point in time, me included. CLL, chronic lymphocytic leukemia, statistically remains one of the more treatable forms of cancer. As you’ve already found, many people who develop CLL don’t require treatment for several years and when/if they do, treatments have a high rate of success.
Very well health.com https://www.verywellhealth.com/cll-prognosis-5211991
Hopefully you’ve read through some of the positive comments in this current discussion you’re following. More conversations can be found by typing in CLL in the top search bar. I’d posted this comment a couple days ago to newly diagnosed CLL member @hikerny. It’s filled with other links for information and discussion topic. https://connect.mayoclinic.org/comment/1277732/
As for worrying about the future?! Whether we have cancer or not, none of us can know what our future holds. So make the best of every day that you’re on the planet and try not to dwell on ‘what if’ thoughts.
One of my favorite quotes (unknown author):
Fear does not stop death. It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.
So try to focus on enjoying your life and living each day to the fullest. ☺️
How frequently will you be having lab work?
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One problem I had not anticipated is educating medical professionals about our watchful waiting approach. I had to go to the ER last night, another issue not associated with CLL, and was asked by the nurse and doctor if I was being treated. This ER has all of my medical records which includes medication taken. Granted they did want to check on that important issue.
-
Like -
Helpful -
Hug
2 ReactionsYesterday, I wet to my acupuncturist, who can’t treat my cancer or he’ll lose his license. However, he could deal with my fatigue and nausea, which he thinks is being caused by a small ulcer. For the first time in weeks, I was able to have a 2.5 mph walk without feeling crappy after and help with kitchen chores after dinner.
My body responds to acupuncture. Unfortunately, Kaiser only allows it for chronic pain, so I have to pay out of pocket. I couldn’t understand why I was feeling crappy, if I was supposedly “asymptomatic.” That and not being diagnosed at Stage 0, even though I had my physical last year, had me reliving the nightmare I lived through nine years of not being diagnosed with hyperparathyroidism. I feel much calmer now, though not happy about this new expense at tax paying time, and just here to document what is calming me down and helping me to get back to my regular routines. I know acupuncture doesn’t work for everyone, but find what does work for you and go for it! I’m at Stage 1 today but I’m hopeful now.
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed on Monday with CLL. It is Stage 0 and detected during blood test at annual physical. I’m stage 0 and have no symptoms. I feel fortunate; even though having cancer isn’t great news, it helps me to prioritize my life at 64 years old. Many thanks for this forum and all of you who help ease the burden of this event. It has been a source of great comfort for me.
God Bless and stay strong.
-
Like -
Helpful -
Hug
7 ReactionsAdequate sleep is needed for your bone marrow make to make efficient blood cells. Sleep is reparative and healing for blood cells and it helps your immune system stay strong. After I absorbed the shock of feeling healthy and then being told I needed a bone marrow biopsy to confirm that my routine blood work showed CLL I went through about a month of depression and felt lethargic. That was not because of my elevated white count. I was going through the classic phases of coming to terms with the new me, a person with cancer. A supposedly incurable cancer. Yet 25 years later, without treatment my CLL for the last 15 years has regressed back inside my bone marrow and my blood is perfect, even the lymphocytes are in the normal range. Regression is not considered a cure. Kind of like herpes, it can go dormant and reappear. After my initial depression I accepted my new reality as a cancer victim and began attacking life with a gusto not wanting to waste a moment on it. I took an early retirement. I didn't feel the need to rest or take naps even if physically tired from my obsessive home and community gardening projects. All that lead to a good nights sleep.
However if my CLL had advanced and I felt tired or sleepy during the day and doctor's told me to slow down and rest during the day I'd follow their advice and try to enjoy my napping.
-
Like -
Helpful -
Hug
11 ReactionsFor many years, we have had the mindset of early detection/early treatment for cancer instilled in us. For many cancers that is true but is not for CLL, yet we fall into that trap. It can be hard for us and our families to take a giant step back from that conditioning. With luck, we may never need treatment or only on a limited basis. That is so in opposition to what we have been conditioned to think.
-
Like -
Helpful -
Hug
1 Reaction@hikerny, I hope you've been following all the responses to your call for finding others who have been diagnosed with chronic lymphocytic leukemia (CLL).
I look forward to hearing more about your journey. When were you diagnosed with CLL? Is this a new diagnosis? Will you be having treatment? How are you doing?
Good morning, Pat. Your doctor sounds like a ‘keeper’! It makes such a difference when you have a doctor who takes the time to explain the situation, answers questions and gives reassurance that you’re on their radar should something pop up. My oncologists/hematologists are like that too. I think their understanding and concern gives us the sense that we’re free to move forward, to enjoy our lives and to not focus on the diagnosis. We’ll be taken care of ‘if’ anything needs tending in the future.
Are you still feeling experiencing the chills you were having?
-
Like -
Helpful -
Hug
2 ReactionsThank you I have CLL and the Oncologist spent an hour explaining that I’m ok and not to worry as it is slow growing and need no medication etc..will check my blood work and keep a watch on me…
I know how you are helping me and others do I thank you !
Pat Lepkowicz
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Like -
Helpful -
Hug
3 ReactionsThanks for the link. I think it is good as a cautionary warning but too many unknowns and too small group to draw accurate conclusions.
Welcome to Connect, @jerseyjim13. I think most everyone worries about developing the big “C” at some point in time, me included. CLL, chronic lymphocytic leukemia, statistically remains one of the more treatable forms of cancer. As you’ve already found, many people who develop CLL don’t require treatment for several years and when/if they do, treatments have a high rate of success.
Very well health.com
https://www.verywellhealth.com/cll-prognosis-5211991
Hopefully you’ve read through some of the positive comments in this current discussion you’re following. More conversations can be found by typing in CLL in the top search bar. I’d posted this comment a couple days ago to newly diagnosed CLL member @hikerny. It’s filled with other links for information and discussion topic.
https://connect.mayoclinic.org/comment/1277732/
As for worrying about the future?! Whether we have cancer or not, none of us can know what our future holds. So make the best of every day that you’re on the planet and try not to dwell on ‘what if’ thoughts.
One of my favorite quotes (unknown author):
Fear does not stop death. It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.
So try to focus on enjoying your life and living each day to the fullest. ☺️
How frequently will you be having lab work?
-
Like -
Helpful -
Hug
7 Reactions