Chronic Lymphocytic Leukemia: Anyone else in remission?

Posted by surreal name @sofaramnotdead, Aug 31, 2017

I have CLL. I had 5 chemo treatments which ended 13 months-ago, and so far, I'm still in remission. Has anyone else here been in remission from
CLL? Thanks.

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Profile picture for Cindy @ssid

Well, I started taking Imbruvica, 420 mg, on July 6th, 2018. Only two days where I felt nauseous with a headache. My wbc # peaked at 100,000 and 78,000 as of last week. My hemoglobin and platelets are also low which they are monitoring this week....blood draw in two hours. Hopefully the numbers will come up on their own. If not I will take a lower dose or stop for awhile...
The anxiety I have with all of this is crazy at times.

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@ssid what was your WBC before this treatment?

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Profile picture for sveta25 @sveta25

Congratulations!!!
My husband was diagnosed with CLL 3 years ago, his WBC is 127 now versus 23 when he was diagnosed, he is loosing weight but his oncologist still on « watch and wait» approach which makes me sick with worry. When did you start treatment and which one was it?
TYIA.

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@sveta25 my name is Frank. I'm in the same situation. I have all these things popping up and they still haven't begun treatment. I have these alments that they say is not related, but from where I'm standing it's all connected somehow. The medical practices today are advanced but their troubleshooting techniques are in need of an upgrade. Diseases evolve like people, so it's fitting that troubleshooting should evolve as well. What the doctors see isn't always the correct diagnosis. I believe that I've had this disease all my life. I look back at my medical experience from where I stand and I can see that even though I was diagnosed within the last few years, I've shown signs of the disease as far as puberty. Maybe if they test for the disease at birth they might be able to get a better understanding of what is happening to us. Please be diligent and educate yourself about your own body. It may help to make progress. For me I think that if I treat my spleen I may be able to slow down the disease and resolve the possible negative impact the disease is influencing on my body. Please remember that the blood supplys life to all your organs and that it is possible that your organs will react to it in a negative way. Please observe the chemical composition of your own blood and watch it closely. It will lead you to problem areas. This will allow you to get a better picture of how the disease is affecting your own blood. I think that because we have slightly different blood composition the disease attacks different organs differently. It's all in the details. I'm not saying doctors are wrong. I'm saying that there may be more to look at than the obvious. Second guess everything will make for better decisions and better troubleshooting. Movement is life.

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Profile picture for fg050370 @fg050370

@sveta25 my name is Frank. I'm in the same situation. I have all these things popping up and they still haven't begun treatment. I have these alments that they say is not related, but from where I'm standing it's all connected somehow. The medical practices today are advanced but their troubleshooting techniques are in need of an upgrade. Diseases evolve like people, so it's fitting that troubleshooting should evolve as well. What the doctors see isn't always the correct diagnosis. I believe that I've had this disease all my life. I look back at my medical experience from where I stand and I can see that even though I was diagnosed within the last few years, I've shown signs of the disease as far as puberty. Maybe if they test for the disease at birth they might be able to get a better understanding of what is happening to us. Please be diligent and educate yourself about your own body. It may help to make progress. For me I think that if I treat my spleen I may be able to slow down the disease and resolve the possible negative impact the disease is influencing on my body. Please remember that the blood supplys life to all your organs and that it is possible that your organs will react to it in a negative way. Please observe the chemical composition of your own blood and watch it closely. It will lead you to problem areas. This will allow you to get a better picture of how the disease is affecting your own blood. I think that because we have slightly different blood composition the disease attacks different organs differently. It's all in the details. I'm not saying doctors are wrong. I'm saying that there may be more to look at than the obvious. Second guess everything will make for better decisions and better troubleshooting. Movement is life.

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@fg050370
Thank you Frank,
Are you loosing weight also?
I have to ask my husband’s oncologist to check his spleen, she does not do that routinely . All she looks at is blood test, very frustrating and am really scared that when she will will suggest treatment he will be too weak for it:(

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Profile picture for sveta25 @sveta25

@fg050370
Thank you Frank,
Are you loosing weight also?
I have to ask my husband’s oncologist to check his spleen, she does not do that routinely . All she looks at is blood test, very frustrating and am really scared that when she will will suggest treatment he will be too weak for it:(

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@sveta25 no I'm not losing weight, but the exact opposite. I have slowly gained weight and the only way I can lose it is starving myself. I went through three nutritionalist and they all gave up on me. Maybe the thyroid is being affected by the disease with your husband's case. I would have them check the thyroid thoroughly to see if it's doing what it's supposed to do and go out from there. The blood could be telling the thyroid to burn energy uncontrollably like a broken thermostat in a heating system. Keep digging into it. His body will tell you where to look. Everything I'm stating is non destructive so there's no harm in looking.

Frank

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Profile picture for fg050370 @fg050370

@sveta25 no I'm not losing weight, but the exact opposite. I have slowly gained weight and the only way I can lose it is starving myself. I went through three nutritionalist and they all gave up on me. Maybe the thyroid is being affected by the disease with your husband's case. I would have them check the thyroid thoroughly to see if it's doing what it's supposed to do and go out from there. The blood could be telling the thyroid to burn energy uncontrollably like a broken thermostat in a heating system. Keep digging into it. His body will tell you where to look. Everything I'm stating is non destructive so there's no harm in looking.

Frank

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@fg050370 His doctor does not like it when I ask questions( I usually go with him). His appointment is in January so I will ask question that you suggested.
Wish you best of luck🙏🙏🙏

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Profile picture for sveta25 @sveta25

@fg050370 His doctor does not like it when I ask questions( I usually go with him). His appointment is in January so I will ask question that you suggested.
Wish you best of luck🙏🙏🙏

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@sveta25 good luck to you too.❤️

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