Hi @ftmolloy, and welcome to Connect. I’m so glad you joined our family where you’re able to chat with others who have share the same diagnosis of CLL. This remains one of the more treatable forms of leukemia. And as you’ve seen, treatments can often be delayed or maybe not needed at all.
But even so, I think anytime we get a diagnosis involving the word cancer or leukemia/lymphoma, we go on high alert. A reminder to live our lives to the fullest, and to refocus and prioritize what’s truly important in life. It looks like you’ve embraced that fully. Thank you for sharing how positive this forum has become for you. Feel free to drop in anytime to share more of your story.
Were you having symptoms that led up to your diagnosis or was this found through an annual physical or routine blood work?
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.
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 agree with you about the benefits of acupuncture. I have acupuncture just once a month (because I, too, have to pay out of pocket), but it is very worthwhile to me. I agree that it might not have the positive effects for everyone, but for those of us who do benefit, it is like having an extra tool in our toolbox of "how to deal with chronic illness."
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.
Hi @ftmolloy, and welcome to Connect. I’m so glad you joined our family where you’re able to chat with others who have share the same diagnosis of CLL. This remains one of the more treatable forms of leukemia. And as you’ve seen, treatments can often be delayed or maybe not needed at all.
But even so, I think anytime we get a diagnosis involving the word cancer or leukemia/lymphoma, we go on high alert. A reminder to live our lives to the fullest, and to refocus and prioritize what’s truly important in life. It looks like you’ve embraced that fully. Thank you for sharing how positive this forum has become for you. Feel free to drop in anytime to share more of your story.
Were you having symptoms that led up to your diagnosis or was this found through an annual physical or routine blood work?
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 12:41pm
@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?
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It was discovered during my annual physical and I found your site to be both informative and comforting! Thanks again.
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3 ReactionsThanks so much! I have the same feelings and your story really helps me understand the situation better!
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2 ReactionsHello @minglu,
I agree with you about the benefits of acupuncture. I have acupuncture just once a month (because I, too, have to pay out of pocket), but it is very worthwhile to me. I agree that it might not have the positive effects for everyone, but for those of us who do benefit, it is like having an extra tool in our toolbox of "how to deal with chronic illness."
-
Like -
Helpful -
Hug
2 ReactionsHi @ftmolloy, and welcome to Connect. I’m so glad you joined our family where you’re able to chat with others who have share the same diagnosis of CLL. This remains one of the more treatable forms of leukemia. And as you’ve seen, treatments can often be delayed or maybe not needed at all.
But even so, I think anytime we get a diagnosis involving the word cancer or leukemia/lymphoma, we go on high alert. A reminder to live our lives to the fullest, and to refocus and prioritize what’s truly important in life. It looks like you’ve embraced that fully. Thank you for sharing how positive this forum has become for you. Feel free to drop in anytime to share more of your story.
Were you having symptoms that led up to your diagnosis or was this found through an annual physical or routine blood work?
-
Like -
Helpful -
Hug
4 ReactionsOne 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
10 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?