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 @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
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?
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.
Hello,
I have had CLL for 3/4 years. The first 3 years it was dormant if that’s the right word. Then I had a flare up: un steady on my feet, light headed. That was caused by a hemoglobin reading of 6 which is not good. So after two units of new blood and 4 infusions of ribitaux (sp?) my blood results are back to normal as my Doctor tells me. But she also said once one has CLL one will have it for the rest of their life. So other than living a healthy lifestyle there isn’t really anything one can do.
I have posted on this site before with my advice (?) and maybe I’m becoming redundant but hope for the best with my positive attitude. Life goes on and enjoy it. I am 77 and will continue with my positive attitude.
Butch Ukura
Please tell me what Lymphatic drainage herbal supplement you take. I could use that.
Taking Brukinsa has made a huge difference in all my swollen Lymph glands went away. Get lots of exercise, because that will help you.
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.
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.
I take Brukinsa too. What side effects do you have, and how do you manage them? I bruise extremely easily, have dry skin, nails and eyes.
Also petechiae on my leg. I am lucky to not have any fatigue.
I've been on Brukinsa since June'24. No side effects so far. I take 2 pills twice a day & generally have at least something little to eat (7:30am/5:30pm). I drink tea throughout the day. I have noticed I am slightly more prone to bruising. A lot more likely to be sick longer – but that's a CLL side effect. Most of my non-CLL stats are pretty much ok. The only other drug I am on is a low dose statin - just thinking about other drug interactions you might have. I'm not sure anyone knows why we all end up with different symptoms from any drug...
About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention. I was already on water pills but still retaining water. The doctors tried a few different medications but was getting worse. I switched doctors a few times and looked at my organs a few times. Last year my new doctor suggested that I see a hemotaligist and they discovered that I had CLL. I'm at stage zero but the fatigue comes in waves now and my empedima is flaring up like crazy. I've just started taking lymphatic drainage herbal tonic and it's working draining the water from my feet, ankles, and legs. It's also improving my energy. Unfortunately I can no longer work as electrician because of my condition. At 55 I can't collect social security, so I'm now struggling with my health and finances. I'm hopeful that I'll be able to manage my illness so that I can at least perform normal tasks again.
@fg050370, dealing with health and financial issues isn't easy, especially with debilitating fatigue. I wanted to let you know about FindHelp https://www.findhelp.org/
FindHelp is a resource directory that helps people find and connect to social services in their area. Services include food pantries, help paying bills, housing, job training, after-school programming and more.
About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention. I was already on water pills but still retaining water. The doctors tried a few different medications but was getting worse. I switched doctors a few times and looked at my organs a few times. Last year my new doctor suggested that I see a hemotaligist and they discovered that I had CLL. I'm at stage zero but the fatigue comes in waves now and my empedima is flaring up like crazy. I've just started taking lymphatic drainage herbal tonic and it's working draining the water from my feet, ankles, and legs. It's also improving my energy. Unfortunately I can no longer work as electrician because of my condition. At 55 I can't collect social security, so I'm now struggling with my health and finances. I'm hopeful that I'll be able to manage my illness so that I can at least perform normal tasks again.
Please tell me what Lymphatic drainage herbal supplement you take. I could use that.
Taking Brukinsa has made a huge difference in all my swollen Lymph glands went away. Get lots of exercise, because that will help you.
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I looked on Amazon, but it's no longer available. Where can I buy this lymphatic drainage support?
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
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?
-
Like -
Helpful -
Hug
3 ReactionsIt 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.
Hello,
I have had CLL for 3/4 years. The first 3 years it was dormant if that’s the right word. Then I had a flare up: un steady on my feet, light headed. That was caused by a hemoglobin reading of 6 which is not good. So after two units of new blood and 4 infusions of ribitaux (sp?) my blood results are back to normal as my Doctor tells me. But she also said once one has CLL one will have it for the rest of their life. So other than living a healthy lifestyle there isn’t really anything one can do.
I have posted on this site before with my advice (?) and maybe I’m becoming redundant but hope for the best with my positive attitude. Life goes on and enjoy it. I am 77 and will continue with my positive attitude.
Butch Ukura
-
Like -
Helpful -
Hug
6 ReactionsNature'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.
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.
-
Like -
Helpful -
Hug
1 ReactionI've been on Brukinsa since June'24. No side effects so far. I take 2 pills twice a day & generally have at least something little to eat (7:30am/5:30pm). I drink tea throughout the day. I have noticed I am slightly more prone to bruising. A lot more likely to be sick longer – but that's a CLL side effect. Most of my non-CLL stats are pretty much ok. The only other drug I am on is a low dose statin - just thinking about other drug interactions you might have. I'm not sure anyone knows why we all end up with different symptoms from any drug...
I hope this helps!
@fg050370, dealing with health and financial issues isn't easy, especially with debilitating fatigue. I wanted to let you know about FindHelp https://www.findhelp.org/
FindHelp is a resource directory that helps people find and connect to social services in their area. Services include food pantries, help paying bills, housing, job training, after-school programming and more.
Please tell me what Lymphatic drainage herbal supplement you take. I could use that.
Taking Brukinsa has made a huge difference in all my swollen Lymph glands went away. Get lots of exercise, because that will help you.
-
Like -
Helpful -
Hug
1 Reaction