Fatigue, Headaches, Fevers, Numbness Without Obvious Cause?

[MommaDP]

My now 63-yo husband was diagnosed with CLL/SLL in January 2018 when external and internal lymph nodes removed during a prostatectomy tested positive for CD5, CD20dim, CD21, CD23, LEF-1, and BCL-2. FISH results were positive for CD5, CD19, CD20dec, CD23, CD43, CD79b dec/partial, CD200, and dim kappa light chain. He is IGHV mutated, positive for one trisomy12 clone and one D13S319 deletion. Since that time his lab draws have been excellent, with expected low Ig numbers but good levels of just about everything else.

In August 2020, he had a terrible bout with Covid that landed him at MD Anderson after being hospitalized locally with poor care. He had multiple small and large clots in both lungs and was nearly placed on a vent, but the doctors were able to treat him effectively. After 4 months on air support following release from hospital, he has been fine ever since.

Until now. Three weeks ago, he lost 12 pounds in days and has been experiencing concerning symptoms daily since then, including extreme fatigue, regular headaches and low-grade fevers, and numb toes. He has no cold or respiratory symptoms, and he has tested negative for flu and Covid more than once. He lost 2 additional pounds a week ago, but is holding firm at 14. We visited his oncologist at MDA two weeks ago, and his labs were "perfect." The doc was suspicious of either a third malignancy or Richter, so he ordered a bone marrow biopsy and a CT-PET, all of which showed nothing concerning. We will be at MDA again on January 25 for another round of labs.

Has anyone had a similar experience? He is still working but comes home thoroughly wiped out every day. He's taking acetaminophen to address his headaches, and the intermittent fevers still persist. The numb toes are especially weird.

Would love to know your thoughts.

[MisfitK]

Op, I'll send your spouse my thoughts and prayers!

Not knowing what they checked in the labs (and knowing I'm not a doc), did they check for a B-12 deficiency? That can present with most of your listed symptoms, including the toes...I'd say diabetes, too, but you'd think that would have been checked in the labs...

[MommaDP in reply to MisfitK]

Thanks for your kind reply, MisfitK. The labs at MDA are always far more extensive than our initial local oncologist ordered, so we're very pleased with that element. I keep a running spreadsheet of all results, so that we can visualize the bigger picture, and there is literally nothing that is concerning in his labs. Given that scenario, the doctor is referring my husband to a rheumatologist at MDA to rule out autoimmune issues. We have also asked for an MMA/ methylmalonic acid test to rule out B12 deficiency.

[LeoPa]

If anybody loses 12 lb in such a short time frame it's most probably water loss. How are his kidneys? How is his blood sugar? With lots of water lost lots of electrolytes are lost too. That can lead to numbness in the fingers and toes. I am no doctor but sometimes the onset of diabetes could present this way if I remember correctly.

[MommaDP in reply to LeoPa]

Thanks for our thoughtful reply, LeoPa. He is at a total of 14 pounds now without trying and is holding steady. His kidneys and blood sugar, along with related lab numbers, appear healthy. We had considered the possibility of diabetes, but that doesn't appear to be the problem. We'll meet with a rheumatologist in the next few weeks and have a series of inflammation-related labs to be drawn that will hopefully rule out an autoimmune issue. It's certainly strange, but we're very thankful that a third malignancy and Richter have both been ruled out.

[texigal]

Hi Momma DP.. has any one considered Post- COVID Syndrome or Long COVID? CDC has an informative cdc.gov/coronavirus/2019-nc...

[MommaDP in reply to texigal]

Thanks for your question, Texigal. We are very familiar with long Covid because he battled that for several months after his ICU hospitalization for Covid pneumonia. He has experienced great health for more than a year since then. I have been reading through a number of recent medical studies dealing with the impact of Covid infection on cancer, and it’s certainly a possibility.

[skipro]

I don’t have any answers but my thoughts and prayers go out to you!!!

Skipro

[MommaDP]

Thanks so much for both thoughts and prayers, Skipro. I am sorry for the long journey you have had with CLL, and I send you the same. I also appreciate the details in your bio notes regarding the nucleocapsid antibody. I will be researching the connection between nucleocapsid antibody and cancer. There seems to be some recent studies to explore on the topic.