Hello all. I’m writing here very nervous and a little bit lost. I was diagnosed in February with CCL Chronic lymphocytic leukemia. It was discovered because of kidney problems. I’m having treatment for that and everything is going well according to my hematologist. I made the tests in February regarding bence jones, lambda and everything returned negative. Now my nephrologist told me to repeat them again because of an albumin protenuria relation in my urine and I will. Besides on the last days I’m having an arm shoulder pain when I woke up. Really painful. After a few hours no more pain. It appears again after I go to bed. It’s only in the morning but really painful. I’m dealing already with CLL, I have 47 years old and two kids with 2 and 5 years so I’m really worried because the need me. Thank you for all the help!
CLL + Multiple myeloma?: Hello all. I’m writing... - CLL Support
CLL + Multiple myeloma?
Are you on any medication for your protein leak? I know you had CLL cells infiltrate your kidneys, my case is a bit different because I present more like MM but bmb just showed CLL with 5 MM cells. My protein leakage before treatment was around 14000, now around 400. Treatment helped and my nephrologist also put me on valsartan 320 mg a day and Farxiga to prevent further kidney damage. You might have some permanent kidney damage from the infiltration which can cause you to leak protein in your urine. As long as it less than 1 gram, my nephrologist is not worried.
Hi! Thank you for your answer! Yes I’m having treatment for my protein leak. Things are really improving in that field. Recovered the albumin and protein leakage is becoming smaller and smaller. The only think that she thought it was strange was a presence of 50% albumin in the protein leakage. Sometimes that can mean I have a monoclonal gammopathy or another thing or not. About the Multiple myeloma she called me today and said that she asked the tests but she doesn’t suspect Multiple myeloma after talking to my hematologist. About the arm pain I went to Fisio and he told me that it’s an inflammation only. All the best!
I was diagnosed 3-1/2 years ago with CLL. Underwent O+V treatment for a year and have been in remission. Prior to that, my PCP said I had high protein in my urine. He referred me to a nephrologist, she put me on a couple of drugs that made me damn near incontinent, but a year later, I was back in normal range and off the drugs. My choice. I told her that I was tired of planning my day in 90 minute increments because of pee breaks. I am currently having chronic upper arm pain after I go to bed - hurts like when you've had a serious injection in your upper arm, but worse. I get up in the morning and it subsides greatly. Likewise, I mentioned it to my PCP this week (who does a lot of basic sports medicine with young athletes), he said I'm probably sleeping on it wrong, or could have rotator cuff issues and/or arthritis. He said he would order an MRI if I wanted it. I said no thanks.... I will if it gets worse. My stepfather died from Multiple Myeloma in 1981. He wasted away 2 years after diagnosis. They had no treatment back then. Now they do. In fact, I was talking to my oncologist last week about my CLL remission and my stepfather. She said they have even better drugs in the works for CLL, and Multiple Myeloma patients are living 30 years after diagnosis now days with the new drugs. You are a young 47..... they will have a cure for CLL and MM in your lifetime. All the best to you!!
Hi! Thank you for your answer! My CLL caused kidney infiltration and protein leakage. Recovered the albumin and protein leakage is becoming smaller and smaller. The only think that she thought it was strange was a presence of 50% albumin in the protein leakage. Sometimes that can mean I have a monoclonal gammopathy or another thing or not. About the Multiple myeloma she called me today and said that she asked the tests but she doesn’t suspect Multiple myeloma after talking to my hematologist. About the arm pain I went to Fisio and he told me that it’s an inflammation only. Let’s see how it goes. All the best!
Interesting. I probably had CLL for years causing the high protein in my urine and my PCP or nephrologist didn't know it. The kidney issue was in 2014 and CLL diagnosed in 2020. I agree, the arm pain is probably inflammation because I took some Ibuprofen for mine, and it helped a lot. I feel that you don't have MM.... with CLL. Is that rare, or what? Anyway, the bottom line is that you have many decades yet to spend with your children. Take care!
I tested positive for bence jones proteins and was cleared of MM. Some folks with CLL have bence jones proteins. I would ask your hematologist to test for MM to rule it out and be on the safe side.
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