Seen my Haem/Onc today. She reviewed abdo pelvis CT scan. Said the
Multiple enlarged nodes were to be expected with CLL. Feels that they are not cause for alarm.
She said nodes either side of neck were fine. Advised me to see a gastroenterologist re nausea although suggested it could be due to 2 courses of Klacid back to back to treat sinusitis way back in Feb/Mar. ordered Immunoglobulin blood tests again. Last results were from July last year. She said CLL does not cause Fatigue or nausea that I am experiencing. I wondered if anyone here has experienced nausea in the absence of enlarged spleen.
Indie
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Indie1234
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I get so irritated when doctors say that CLL does not cause fatigue and/or nausea, or any of the other dozens of things it can cause. Don’t they recognize the existence of cytokines? My CLL specialist is quick to point out that CLL can cause fatigue, nausea and many, many other things. However, other issues must be ruled out as well. If CLL does not cause fatigue, then why is extreme fatigue one of the symptoms that can lead to starting treatment?
Make sure all your vitamin and mineral levels are up to where they should be and check with your primary care doctor to full out other causes. I do agree that you should see a GI doctor about the nausea, but “ multiple enlarged nodes” could be pressing on the vagus nerve which is just one example of how CLL could cause nausea. While we cannot blame every little (and big) ache and pain on CLL, when other issues are ruled out, it simply could be the CLL. This disease is so different with each person, it would be difficult to blame or rule out anything just as a general rule.
One last thought. Is your onc/hematologist a CLL specialist? If not then getting a second opinion might be a good option. It could not hurt.
My specialist CLL haematologist at a leading London teaching hospital is quite clear: CLL causes tiredness. She is also quite clear that she cannot do anything about it - much to her regret!
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