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Sudden weight loss and decrease in appetite
My Mom was diagnosed with CLL last January. Late January of this year she went to her doctor because she was weak and was losing her appetite. As it progressed she became very confused and out of it. We had her admitted to Bellin and they ran every test they could, but were unable to find anything that would be causing it. They decided it was probably Delirium and she is now in a rehab center, but her condition has not improved at all in the last 2 months. She still says she’s full and barely eats anything. I’m wondering if anyone else has experienced this, and if it would be worth getting a second opinion. I’ve read that spleen issues can be a symptom of CLL. They did a CT scan at the hospital and they said that was fine, but could there be any underlying issues that would be missed with that? Any help would be greatly appreciate. Very hard to see her in this state.
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Check out the CLL Society website and ask there. CLL is an orphan disease. Not many people have it and oncologists don’t necessarily keep up with rapid developments happening. Get an oncologist who knows to do the two genetic tests first. Chemo is NOT the first line treatment anymore.
My wife was diagnosed about a year ago. I could be wrong, but the “fullness” and weight loss sound like the watchful waiting period is over and it’s time to start treatment. Don’t know about the dementia.
CLL Society has a search engine for CLL-aware oncologists near you. And set up an Ask the Expert appointment (free, online).
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2 ReactionsI'm not so sure about that. I don't have CLL but something similar in nature. I have t-cell non-Hodgkins Lymphoma. (It's rare for NHL). I'm still in watch and wait status after 15 mos, however, when I saw my oncologist in January, he mentioned low dose Methotrexate since my WBC is now up to 6600. Low dose because even at 6600, he thinks it will improve upcoming symptoms and kill some cancer cells. Also, I'm refusing high dose due to my age.
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3 ReactionsHi, @deezerjr. Oh dear, that sounds like such a scary situation with your poor mom. She’s very lucky to have you advocating for her health. You mentioned Bellin…are you talking about Bellin Health in Green Bay, WI?
With your mom’s diagnosis of CLL, (Chronic Lymphocytic Leukemia) she should really be seen by a specialist who is familiar this form of leukemia. I highly encourage you to have a 2nd opinion soon. If she is in Green Bay or the surrounding area, I’d suggest a larger, highly accredited cancer team with a deeper bench of specialists such as Green Bay Oncology. Here’s their website. https://gboncology.com
The clinics where they are affiliated are on that site…including St Vincent and St Mary’s in GB. Also Sturgeon Bay, Appleton, Oshkosh, etc.
I don’t live in Green Bay but I am a patient of GB Oncology in one of their other offices which you’ll see on their website. I had 5 doctors on my team and they were all wonderful. Very attentive, compassionate and knowledgable.
You’re right, one of the common symptoms of CLL can be an enlarged spleen, especially if the disease progresses. The enlarging spleen can cause a great deal of discomfort with eating and breathing because it crowds the other organs and the diaphragm. This leaves your mom feeling full and possibly short of breath. I’ve gone through this myself with another form of Luekemia and it is miserable! What helped me was basically nibbling throughout the day. No big meals at all. Small portions of easily digested, non gassy foods. So nothing greasy or friend. Encourage your mom not to lie on her left side. Maybe try reclining but propped up with pillows.
CLL is usually very slow to progress and often doesn’t require treatment right away. But it is also difficult to know when your mom actually started developing this disease so she may be in a more advanced stage which would now require treatment. CLL remains one of the more treatable forms of leukemia with great success, but it’s important to get treatment. Is your mom taking any medication for her CLL?
@mattg, welcome. Is your wife currently on watch and wait treatment or other treatment? How is she doing? How are you doing?