It is amazing how differently some of us react with CLL. I was diagnosed with it (stage 0) in Sept of 2022 after no other explanation was found for my elevated white blood count. Since I had not seen a doctor in many years before the April ER visit where blood work was just a routine item, I have no idea of how many years I have had it. I am on a 6 month blood work schedule and now yearly oncologist visit. When the results of the blood tests come back and they remain stable, I put this aside until the next blood draw. But then I have a type where the prognosis is good.
I was diagnosed with cll in Feb of this year. I thought I was going through menopause lol little did I know what was ahead. When I looked at the blood work, I went back as far as Jan 2023 and my lymphocytes had been high at that time. Gradually going higher and higher, I also had a chronic UTI. Finally in Feb of this year something clicked with my primary care provider. Remember, I and she thought it was menopause. So I was being treated for that which had my hormones all out of wack. When she said you have a UTI, I said. What’s new, I always have one. That’s when she started digging deeper into what was going on with me. Yes I had a uti and the antibiotics that was given to me before wasn’t working because I had ecoli in my bladder. She gave me stronger meds and referred me to the oncologist. I’m a stage 1 with cll/sll, lymph nodes are enlarged as are the lymph nodes around my liver and spleen. I have every symptom except weight loss. Lol. I need that! Haha. I have to find the funny in this disease. Lately I have had joint pan with swelling in my ankles mostly the right one and my hands hurt so bad. Tonight I noticed a bump and swelling on my thumb. Sometimes I just want to cry. I’m 53 and this sucks.
Hi @lori413 Reaching through the computer to give you a hug…and let you know it’s ok to cry. It’s a great release for pent up anxiety and that crazy fear of the unknown that leaves us rattled sometimes. So purge with the tears and then forge onward! ☺️ I agree though, laughter is the best medicine. Keeping a sense of humor (sometimes inappropriately so, LOL) through these life adventures has been my saving grace.
Fortunately CLL, according to many sources of credible data, remains one of the more treatable forms of leukemia with patients often living full and productive lives with the disease. And it’s generally very slow to develop so treatment may be delayed for years. I know that doesn’t stop the underlying thoughts of having a chronic condition or the occasional side effects that surface, but it should offer some level of encouragement that this is something you can live and try to put in the background of your thoughts.
I have a young neighbor (early 40s now) who was diagnosed 10+ years ago. He and his wife have several young children. He’s out daily playing football, jogging, mowing lawn, working… Nothing seems to slow him down. His case was diagnosed at stage 2 so he was placed on targeted therapy right way. He’s doing fabulously well with no advancement of the disease. I know everyone’s journey is different but I remember how terrified the family was initially of ‘having cancer’ and worried about treatments. Now it’s just routine daily life…
So I hope you’ll be able to take all these new little symptoms that pop up here and there with a grain of salt and a dose of quick tears. It’s pretty normal to have a surge of anxiety when we get a new ache or pain. When that happens I try to dismiss it and most of the time whatever it was has disappeared within 24 hours! Like what the heck was that?? LOL. Anyway, you’ve found a great group of new friends here in Connect, so Welcome!
Does your doctor feel the ankle and hand pain are related to your diagnosis?
Hi @lori413 Reaching through the computer to give you a hug…and let you know it’s ok to cry. It’s a great release for pent up anxiety and that crazy fear of the unknown that leaves us rattled sometimes. So purge with the tears and then forge onward! ☺️ I agree though, laughter is the best medicine. Keeping a sense of humor (sometimes inappropriately so, LOL) through these life adventures has been my saving grace.
Fortunately CLL, according to many sources of credible data, remains one of the more treatable forms of leukemia with patients often living full and productive lives with the disease. And it’s generally very slow to develop so treatment may be delayed for years. I know that doesn’t stop the underlying thoughts of having a chronic condition or the occasional side effects that surface, but it should offer some level of encouragement that this is something you can live and try to put in the background of your thoughts.
I have a young neighbor (early 40s now) who was diagnosed 10+ years ago. He and his wife have several young children. He’s out daily playing football, jogging, mowing lawn, working… Nothing seems to slow him down. His case was diagnosed at stage 2 so he was placed on targeted therapy right way. He’s doing fabulously well with no advancement of the disease. I know everyone’s journey is different but I remember how terrified the family was initially of ‘having cancer’ and worried about treatments. Now it’s just routine daily life…
So I hope you’ll be able to take all these new little symptoms that pop up here and there with a grain of salt and a dose of quick tears. It’s pretty normal to have a surge of anxiety when we get a new ache or pain. When that happens I try to dismiss it and most of the time whatever it was has disappeared within 24 hours! Like what the heck was that?? LOL. Anyway, you’ve found a great group of new friends here in Connect, so Welcome!
Does your doctor feel the ankle and hand pain are related to your diagnosis?
i see the dr in December. i see my primary on wednesday. i will mention it to her and see what she says. thank you for the kind words and the encouragement. i so appreciate it
Nature's sunshine lymphatic drainage and pure health lymph system support. I'm also going to try the raw Herb form from these in a tea. I recently found out that high ambient temperatures can make it worse.
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?
@loribmt Hi Lori
I have been in contact with a hematologist for a few years due to blood tests not being normal. No one has actually said I have CLL but I just happened to read it on my clinic notes so I want to prepare myself. I have bouts of tiredness, night sweats and bones which ache and ache. There are times when walking is very difficult because of back issues but recently I have begun to walk again with poles to help me for stability and I breathe through the pain because it is important to do some exercise so I push myself. I also do Chi Chong and Feldenchrist so am not a couch potato! November cannot come soon enough for a proper diagnosis. Due to the situation here in my country, my clinic has been sending my blood results to the hematologist and they have relayed the outcome to me all is well. Now that doctor wants to see me in person. Are there any questions I should ask I feel as if I am missing something?
@loribmt Hi Lori
I have been in contact with a hematologist for a few years due to blood tests not being normal. No one has actually said I have CLL but I just happened to read it on my clinic notes so I want to prepare myself. I have bouts of tiredness, night sweats and bones which ache and ache. There are times when walking is very difficult because of back issues but recently I have begun to walk again with poles to help me for stability and I breathe through the pain because it is important to do some exercise so I push myself. I also do Chi Chong and Feldenchrist so am not a couch potato! November cannot come soon enough for a proper diagnosis. Due to the situation here in my country, my clinic has been sending my blood results to the hematologist and they have relayed the outcome to me all is well. Now that doctor wants to see me in person. Are there any questions I should ask I feel as if I am missing something?
Good morning, @mcconachie. You seem very positive and disciplined, which is really giving you some healthy coping skills. Because knowing, only from a chance reading of your medical notes, that you have CLL but have never gotten any information from your doctor or confirmation, has to be nerve wracking and frustrating! I’m glad you have the determination to take action to regain your stability with exercising and mind/body exercises to gain a level of control over your pain. Very commendable!
With your hematology appointment coming up it will be helpful to have your list of questions and concerns handy. Time is always limited at these appointments, so notes can really be useful in keeping the conversations on track! Especially with waiting months to get your appointment! Yikes.
To help get you started I found 2 good sources with potential questions to ask your hematologist about CLL.
A combination tests of CBC,Fish and mutation of certain genes will give prognosis and the way forward
Excellent docs at Mayo where I go for treatment and follow up
Hi @lori413 Reaching through the computer to give you a hug…and let you know it’s ok to cry. It’s a great release for pent up anxiety and that crazy fear of the unknown that leaves us rattled sometimes. So purge with the tears and then forge onward! ☺️ I agree though, laughter is the best medicine. Keeping a sense of humor (sometimes inappropriately so, LOL) through these life adventures has been my saving grace.
Fortunately CLL, according to many sources of credible data, remains one of the more treatable forms of leukemia with patients often living full and productive lives with the disease. And it’s generally very slow to develop so treatment may be delayed for years. I know that doesn’t stop the underlying thoughts of having a chronic condition or the occasional side effects that surface, but it should offer some level of encouragement that this is something you can live and try to put in the background of your thoughts.
I have a young neighbor (early 40s now) who was diagnosed 10+ years ago. He and his wife have several young children. He’s out daily playing football, jogging, mowing lawn, working… Nothing seems to slow him down. His case was diagnosed at stage 2 so he was placed on targeted therapy right way. He’s doing fabulously well with no advancement of the disease. I know everyone’s journey is different but I remember how terrified the family was initially of ‘having cancer’ and worried about treatments. Now it’s just routine daily life…
So I hope you’ll be able to take all these new little symptoms that pop up here and there with a grain of salt and a dose of quick tears. It’s pretty normal to have a surge of anxiety when we get a new ache or pain. When that happens I try to dismiss it and most of the time whatever it was has disappeared within 24 hours! Like what the heck was that?? LOL. Anyway, you’ve found a great group of new friends here in Connect, so Welcome!
Does your doctor feel the ankle and hand pain are related to your diagnosis?
@loribmt I find your words very encouraging. I was diagnosed with CLL in November of 2023. I’m still considered stable. No treatments needed to date. I find the disease is always in the back of my mind and with every new ache or pain I do get concerned. It’s hard not to! Your comments always help! I have bloodwork every 3 months. Lymphocytes and Leukocytes always a bit high. All other results are good.
@loribmt I find your words very encouraging. I was diagnosed with CLL in November of 2023. I’m still considered stable. No treatments needed to date. I find the disease is always in the back of my mind and with every new ache or pain I do get concerned. It’s hard not to! Your comments always help! I have bloodwork every 3 months. Lymphocytes and Leukocytes always a bit high. All other results are good.
Good morning, @marynoelle. I know what you mean about having something going on in the back of your mind such as a diagnosis or whatever little bean that got planted which really doesn’t need any tending. And certainly doesn’t warrant encouragement…but it can take root and bloom into thoughts out of our control! 😳 We humans seem to have that knack for always letting our mind wander to the ‘worst case scenario’, which is often just some vague notion and seldom becomes reality! So we end up wasting so much time, energy and peace of mind worrying about nothing!
I found this quote a while ago and I know I’ve shared it with Connect before. There was no author cited but it was impactful.
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”
While it’s ok to note you have a condition that may need attention someday, it’s important to not let it define you. IF something progresses and you need treatment, that is the time to deal with it. I know being in active surveillance can feel a bit unsettling. I’m flagged as active surveillance too, even though I am in full remission. But for me it means my doctor is vigilant to catch any potential issues in the future and until IF or WHEN that happens, it’s for him to worry about, not me. ☺️
I read (and saved) an article on Watchful Waiting the other day from Roswell Cancer Center. It gave such a good explanation for why active monitoring and delay of treatment in some cancers such as CLL and lymphoma is the better option! Maybe you’ll appreciate it too. Here’s the link: https://www.roswellpark.org/cancertalk/202501/what-watchful-waiting-lymphoma-or-chronic-leukemia
Not sure where you live, but right now in northern Wisconsin we’re enjoying glorious autumn weather! Enjoy your weekend and no ‘what if’ thoughts allowed. 🥰
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It is amazing how differently some of us react with CLL. I was diagnosed with it (stage 0) in Sept of 2022 after no other explanation was found for my elevated white blood count. Since I had not seen a doctor in many years before the April ER visit where blood work was just a routine item, I have no idea of how many years I have had it. I am on a 6 month blood work schedule and now yearly oncologist visit. When the results of the blood tests come back and they remain stable, I put this aside until the next blood draw. But then I have a type where the prognosis is good.
Hi @lori413 Reaching through the computer to give you a hug…and let you know it’s ok to cry. It’s a great release for pent up anxiety and that crazy fear of the unknown that leaves us rattled sometimes. So purge with the tears and then forge onward! ☺️ I agree though, laughter is the best medicine. Keeping a sense of humor (sometimes inappropriately so, LOL) through these life adventures has been my saving grace.
Fortunately CLL, according to many sources of credible data, remains one of the more treatable forms of leukemia with patients often living full and productive lives with the disease. And it’s generally very slow to develop so treatment may be delayed for years. I know that doesn’t stop the underlying thoughts of having a chronic condition or the occasional side effects that surface, but it should offer some level of encouragement that this is something you can live and try to put in the background of your thoughts.
I have a young neighbor (early 40s now) who was diagnosed 10+ years ago. He and his wife have several young children. He’s out daily playing football, jogging, mowing lawn, working… Nothing seems to slow him down. His case was diagnosed at stage 2 so he was placed on targeted therapy right way. He’s doing fabulously well with no advancement of the disease. I know everyone’s journey is different but I remember how terrified the family was initially of ‘having cancer’ and worried about treatments. Now it’s just routine daily life…
So I hope you’ll be able to take all these new little symptoms that pop up here and there with a grain of salt and a dose of quick tears. It’s pretty normal to have a surge of anxiety when we get a new ache or pain. When that happens I try to dismiss it and most of the time whatever it was has disappeared within 24 hours! Like what the heck was that?? LOL. Anyway, you’ve found a great group of new friends here in Connect, so Welcome!
Does your doctor feel the ankle and hand pain are related to your diagnosis?
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3 Reactionsi see the dr in December. i see my primary on wednesday. i will mention it to her and see what she says. thank you for the kind words and the encouragement. i so appreciate it
I looked on Amazon, but it's no longer available. Where can I buy this lymphatic drainage support?
I'd try looking up the company that makes it. It takes a little longer to ship but there's not much of a price difference. I'd get two bottles.
@loribmt Hi Lori
I have been in contact with a hematologist for a few years due to blood tests not being normal. No one has actually said I have CLL but I just happened to read it on my clinic notes so I want to prepare myself. I have bouts of tiredness, night sweats and bones which ache and ache. There are times when walking is very difficult because of back issues but recently I have begun to walk again with poles to help me for stability and I breathe through the pain because it is important to do some exercise so I push myself. I also do Chi Chong and Feldenchrist so am not a couch potato! November cannot come soon enough for a proper diagnosis. Due to the situation here in my country, my clinic has been sending my blood results to the hematologist and they have relayed the outcome to me all is well. Now that doctor wants to see me in person. Are there any questions I should ask I feel as if I am missing something?
Good morning, @mcconachie. You seem very positive and disciplined, which is really giving you some healthy coping skills. Because knowing, only from a chance reading of your medical notes, that you have CLL but have never gotten any information from your doctor or confirmation, has to be nerve wracking and frustrating! I’m glad you have the determination to take action to regain your stability with exercising and mind/body exercises to gain a level of control over your pain. Very commendable!
With your hematology appointment coming up it will be helpful to have your list of questions and concerns handy. Time is always limited at these appointments, so notes can really be useful in keeping the conversations on track! Especially with waiting months to get your appointment! Yikes.
To help get you started I found 2 good sources with potential questions to ask your hematologist about CLL.
This is an article from Mayo earlier this year:
~ Living with chronic lymphocytic leukemia: Here’s what to ask your healthcare team during your next appointment
https://mcpress.mayoclinic.org/managing-cll/living-with-chronic-lymphocytic-leukemia-heres-what-to-ask-your-healthcare-team-during-your-next-appointment/
~~~~~~~
~From the American Cancer Society:
Questions to Ask About Chronic Lymphocytic Leukemia (CLL)
https://www.cancer.org/cancer/types/chronic-lymphocytic-leukemia/detection-diagnosis-staging/talking-with-doctor.html
I also tossed in this discussion on meeting with a new specialist:
~Your tips on how to get off to the best start with a new specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
You mentioned your blood numbers have been off for several years. Were these results never discussed with you?
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2 ReactionsA combination tests of CBC,Fish and mutation of certain genes will give prognosis and the way forward
Excellent docs at Mayo where I go for treatment and follow up
@loribmt I find your words very encouraging. I was diagnosed with CLL in November of 2023. I’m still considered stable. No treatments needed to date. I find the disease is always in the back of my mind and with every new ache or pain I do get concerned. It’s hard not to! Your comments always help! I have bloodwork every 3 months. Lymphocytes and Leukocytes always a bit high. All other results are good.
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Helpful -
Hug
2 ReactionsGood morning, @marynoelle. I know what you mean about having something going on in the back of your mind such as a diagnosis or whatever little bean that got planted which really doesn’t need any tending. And certainly doesn’t warrant encouragement…but it can take root and bloom into thoughts out of our control! 😳 We humans seem to have that knack for always letting our mind wander to the ‘worst case scenario’, which is often just some vague notion and seldom becomes reality! So we end up wasting so much time, energy and peace of mind worrying about nothing!
I found this quote a while ago and I know I’ve shared it with Connect before. There was no author cited but it was impactful.
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”
While it’s ok to note you have a condition that may need attention someday, it’s important to not let it define you. IF something progresses and you need treatment, that is the time to deal with it. I know being in active surveillance can feel a bit unsettling. I’m flagged as active surveillance too, even though I am in full remission. But for me it means my doctor is vigilant to catch any potential issues in the future and until IF or WHEN that happens, it’s for him to worry about, not me. ☺️
I read (and saved) an article on Watchful Waiting the other day from Roswell Cancer Center. It gave such a good explanation for why active monitoring and delay of treatment in some cancers such as CLL and lymphoma is the better option! Maybe you’ll appreciate it too. Here’s the link:
https://www.roswellpark.org/cancertalk/202501/what-watchful-waiting-lymphoma-or-chronic-leukemia
Not sure where you live, but right now in northern Wisconsin we’re enjoying glorious autumn weather! Enjoy your weekend and no ‘what if’ thoughts allowed. 🥰
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Helpful -
Hug
7 Reactions