1. < Blood Cancers & Disorders

CLL leukemia: Just diagnosed, what can be done?

Posted by kegraves @kegraves, Jun 6, 2022

Husband 84 just diagnosed with CLL,
Is this common in older people and what things are done to stop from progressing?? We are new to this site and this diagnosis..

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nana120 | @nana120 | 2 days ago
In reply to @pinkpocketbooks "OMG.....You can imagine how happy this makes me feel. Did you make any major lifestyle changes?..." + (show)
@pinkpocketbooks

OMG.....You can imagine how happy this makes me feel. Did you make any major lifestyle changes? You're amazing...kudo's to you,

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No real changes, just regular lab work to check white blood count and listen to your body. Rest when you need it! I remember how unnerving my original diagnosis was and would tell you to take a deep breath & live your life.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @pinkpocketbooks "Hi there...I am 53, and was diagnosed with CLL this week. I got the news while..." + (show)
@pinkpocketbooks

Hi there...I am 53, and was diagnosed with CLL this week. I got the news while traveling abroad with my family; we were celebrating that both of my children are gainfully employed and leaving the nest this summer. I was shocked and devastated to say the least. Just as I was able to start focussing on my own wellbeing, this came out of nowhere. I hear great things about living long and fulfilling lives....but I am starting at (what I feel is) such a young age. Has anyone else been diagnosed in their early 50's and what has your experience been like?

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@pinkpocketbooks, I'd like to add my welcome. I'm so glad you connected with @nana120.

I moved your question about CLL to this existing discussion:
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I did this so you can read previous posts and connect with members like @kegraves @carl50 @rlybolt @mabfp3 @njhornung and many other members who have shared their CLL experiences.

CLL is generally a very slowly developing form of chronic leukemia. Treatment may not be needed right away. What next steps have been suggested for you?

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pinkpocketbooks | @pinkpocketbooks | 3 days ago
In reply to @pinkpocketbooks "Hi there...I am 53, and was diagnosed with CLL this week. I got the news while..." + (show)
@pinkpocketbooks

Hi there...I am 53, and was diagnosed with CLL this week. I got the news while traveling abroad with my family; we were celebrating that both of my children are gainfully employed and leaving the nest this summer. I was shocked and devastated to say the least. Just as I was able to start focussing on my own wellbeing, this came out of nowhere. I hear great things about living long and fulfilling lives....but I am starting at (what I feel is) such a young age. Has anyone else been diagnosed in their early 50's and what has your experience been like?

Jump to this post

OMG.....You can imagine how happy this makes me feel. Did you make any major lifestyle changes? You're amazing...kudo's to you,

REPLY
1 reply
nana120 | @nana120 | 3 days ago
In reply to @pinkpocketbooks "Hi there...I am 53, and was diagnosed with CLL this week. I got the news while..." + (show)
@pinkpocketbooks

Hi there...I am 53, and was diagnosed with CLL this week. I got the news while traveling abroad with my family; we were celebrating that both of my children are gainfully employed and leaving the nest this summer. I was shocked and devastated to say the least. Just as I was able to start focussing on my own wellbeing, this came out of nowhere. I hear great things about living long and fulfilling lives....but I am starting at (what I feel is) such a young age. Has anyone else been diagnosed in their early 50's and what has your experience been like?

Jump to this post

I was diagnosed with CLL at age 54 & I’m now 82. It is a watch & wait chronic leukemia. I have taken oral chemo 3 times in past years when my white count got to over 80. Other than fatigue it has not caused any other life changes.

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pinkpocketbooks | @pinkpocketbooks | 3 days ago

Hi there...I am 53, and was diagnosed with CLL this week. I got the news while traveling abroad with my family; we were celebrating that both of my children are gainfully employed and leaving the nest this summer. I was shocked and devastated to say the least. Just as I was able to start focussing on my own wellbeing, this came out of nowhere. I hear great things about living long and fulfilling lives....but I am starting at (what I feel is) such a young age. Has anyone else been diagnosed in their early 50's and what has your experience been like?

REPLY
3 replies
5gk | @5gk | Oct 25, 2023
In reply to @justinesmith "Thank you for this information about green tea. I was a little confused about how much..." + (show)
@justinesmith

Thank you for this information about green tea. I was a little confused about how much to take. I have been taking two capsules of green tea extract from Costco daily. I have read on another blog that some of the people in the Mayo Clinic trial had to drop out because their liver enzymes became to high. I think they were also taking Tumeric pills. This is very interesting about the beet juice also. I have read that it is an old remedy to build blood and have been boiling and eating 2 beets a day. Do you know the amount of EGCG and the type of EGCG used in the study? There are also studies from Taiwan about traditional Chinese medicine (herbs) being very effective for watch and wait people who have CLL which I am looking into. How long have you been taking the green tea and beet juice?

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For the last 2 years- since I was diagnosed.

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donsunlover | @donsunlover | Oct 24, 2023
In reply to @dorphy82 "Thank you for your response and support Lori. My oncologist simply admitted she does not know..." + (show)
@dorphy82

Thank you for your response and support Lori. My oncologist simply admitted she does not know what treatment to pursue that will help me ...... I will start leukeran in July (which I also had in 2014), if that doesn't help, will try chemo and finally radiation. I am very active physically, the only symptom at present is a swollen abdomen. I do not expect a further diagnosis or treatment suggestion, simply would appreciate knowing what other members have tried with success ..... i.e. in 2014 I went on an extreme health regime taking Barleygreen, ginger, curcumin and fresh juices, etc but find the juicing time-consuming ......thanks again for your prompt response! Have a good day!

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Medicine is changing very quickly over time. It is necessary to keep informed of the last changes for the best approach. One important example of this is the Chinese approach using curcumin. The following older study show curcumin was important, but also points out that in it's normal form capsules even up to 8000 to 12000 mg/day were not absorbed into the blood stream. What little gets to the blood only stays a few hours because it is water soluble.
https://www.sciencedirect.com/science/article/pii/S222116911730494X

All has changed now. Taking 95% curcuminoids with black pepper extract capsules orally is 2000% more absorbed into the blood. Available online. It still only stays in the body a short time, which can be remedied by taking it several times a day. More trials are being done to show the new found effectiveness of available cuccumin in the treatment of cancer and many other disorders or conditions.

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lucksuen | @lucksuen | Oct 23, 2023
In reply to @justinesmith "Thank you for this information about green tea. I was a little confused about how much..." + (show)
@justinesmith

Thank you for this information about green tea. I was a little confused about how much to take. I have been taking two capsules of green tea extract from Costco daily. I have read on another blog that some of the people in the Mayo Clinic trial had to drop out because their liver enzymes became to high. I think they were also taking Tumeric pills. This is very interesting about the beet juice also. I have read that it is an old remedy to build blood and have been boiling and eating 2 beets a day. Do you know the amount of EGCG and the type of EGCG used in the study? There are also studies from Taiwan about traditional Chinese medicine (herbs) being very effective for watch and wait people who have CLL which I am looking into. How long have you been taking the green tea and beet juice?

Jump to this post

In fact, the effectiveness of traditional Chinese medicine (herbs) in the treatment of CLL is approached with caution in China. While some hospitals and doctors do emphasize that traditional Chinese medicine (herbs) can alleviate the suffering caused by CLL to some extent, the majority of CLL patients in China have not participated in the treatment involving traditional Chinese medicine (herbs)。good luck！

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zernone5 | @zernone5 | May 25, 2023

Thank you for this helpful information.

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justinesmith | @justinesmith | May 24, 2023

I've had stage 0 cll for a year and was told I may not need treatment for many years. If you like, you can contact the cll society and have a free consultation with one of their expert doctors. He looked at my tests and gave his opinions.

One thing to be aware of though is that a person may not be considered needing treatment but they might still have treatments. I have heard about people of suffer from tiredness and lowered immunity due to cll but they are not yet on treatment. Also, I have heard of some people who have treatment and it doesn't help them much.

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