Anyone have chronic lymphocytic leukemia (CLL)?

@loribmt
Good advice. It’s hard to wait. Thank you.

I have been wondering about how to ask if anyone has experienced any help at all with the horrible fatigue I've been having with CLL. I was diagnosed in February of 2020 when my WBC started climbing steadily from 10.46 (10,460/L) to 41,430/L today. Lymphocytes started climbing at the same time to 36,620/L today. I had Covid in August of 2021, and was diagnosed with "Long Covid", ME/CFS, and fibromyalgia in October of 2021. Fatigue has always been the worst part, along with weakness and extreme sweating during the day, whether it's cold or hot outside, plus I get mild sore throats and feel like I'm always coming down with the flu. Starting this year, the fatigue has gotten so much worse, to the point to where I had to go to Urgent Care yesterday because I could barely make it from the parking lot to my car at Kaiser. I went back in to ask for a blood pressure check (which was okay), but when the nurse saw the sweat literally pouring off my body and I told her I was having intestinal cramping, nausea, chills and was really weak, all of a sudden there were 6 nurses surrounding me, taking all my vital signs. Diabetes number was high but not alarming. EKG was good. Urinalysis showed UTI and the doctor gave me antibiotics for that and possible diverticulitis. But he said that he suspects the fatigue, weakness, chills and sweating could be from the CLL. Both my PCP and oncologist say there's no way to know if it is from ME/CFS, fibromyalgia, or CLL, so I am left trying to deal with it and not knowing what I can do. So this is my question: Has anyone had any relief from the fatigue, etc., after treatment? One guy at CLL Society said he insisted on treatment even though his numbers weren't indicating it, and it helped with the fatigue, but I read that a few years ago. This fatigue is basically keeping me in my recliner most of the day, which is no way to live!

My wife was diagnosed 2 yrs ago. Continues to be at stage 0 with an elevating white cell count. The fatigue has gotten much worse. Has anyone begun treatment based on fatigue alone? If so what was the tx and did it help with the fatigue?

@loriskt My goodness, gurl!! You are in a world of hurt right now. I’m glad that you came here to share what’s going on. First, having a UTI and possible diverticulitis can just completely wipe out any last bit of energy you have…on top of fibromyalgia and long Covid? Yikes. No wonder you feel like you’ve gone through a wringer!

Yesterday must have been harrowing for you! But now that you’re being treated with antibiotics I think you’ll start feeling some relief in a couple of days to some of the issues going on.
If I may though, as someone who was on antibiotics for 2.5 years, let me help keep your guts healthy. I’d suggest getting a couple tubs of non-fat, plain Greek Yogurt. You can sweeten it a little with jam, honey, fruit, etc. But don’t buy the sweetened yogurt. Just too much sugar.

Eat 1/4 cup or more, three or four times per day. Do this at least 2 hours after and 2 hours before you have your antibiotics. If you take it too closely to the meds, the antibiotics will kill off the probiotics of the yogurt. This will take planning on your part but it’s worth it to avoid diarrhea issues! Even when you’re done with the prescription, keep up the yogurt another couple of weeks past that! And drink lots of room temp water to keep things flushed…

I’m not sure if the CLL is the culprit for all of the symptoms right now. Though many are common with CLL like night sweats, fatigue, chills. But usually not to the extent that you’re experiencing right now. It may also be from your gut issues and the UTI. While you’re waiting for other members to comment on that, I have another thought.

Since you’re having so many systemic issues happening with long covid, fibromyalgia & CLL I’m going to toss out the idea of visiting a Functional Medical practitioner. Functional Medicine is a science-based, root-cause approach that looks at how your body’s systems—nutrition, sleep, stress, hormones, inflammation, gut health, metabolism—interact. Rather than treating symptoms singularly, this approach evaluates how the whole system functions together.
For some people it can really provide answers to their health issues. I’ve had my own experience with this type of practice and it was so helpful along with my stellar conventional medical teams.
Not sure where you live but here is a guide in finding a clinic near you.
https://www.ifm.org/find-a-practitioner
Has your CLL doctor mentioned a stage for your disease? Have there been any signs of progression with changing blood numbers since your diagnosis?

@loribmt
Thank you for all the tips and the link for a functional medicine practioner! I'm on my second full day of antibiotics, no relief yet but I'm hopeful.

I just got an e-mail from myleukemiateam.com that said "The U.S. Food and Drug Administration (FDA) has approved the first all-oral, fixed-duration combination therapy for adults newly diagnosed with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). “All-oral” means the medications are taken by mouth — no infusions or injections are needed. “Fixed-duration” means the treatment is given for a set amount of time, not indefinitely.".

It's the first I have heard of therapy for newly diagnosed adults. I'm going to ask my oncologist about it.

@loriskt The regimen you speak of is Acalabrutinib (Calquence) +Venetoclax (Venclexta). It's typically prescribed as a time limited treatment with 2 cycles (28 days) of Acalabrutinib alone (the reduce or debulk the cancer burden) followed by 12 cycles of the drugs in combination. The biggest logistic challenge is that in cycle 3 the Venetoclax has to be given in a weekly ramp up from 20mg per day to 50mg, 100mg, 200mg and finally full dose 400mg with a good number of required blood draws and doctor visits. This minimizes the possibility of Tumor Lysis Syndrome (TLS) where the kidneys can't process the rapid die off of CLL cells. I'm on a similar regimen in a Mayo trial, but it uses even a newer combination of Pirtobrutinib + Venetoclax. This drug combination has worked beautifully and I've experienced no side effects. Proving just how far cancer treatment has advanced.

@tomatack
Thanks for that information. Were you at the stage where you needed the treatment? My doctor hasn't actually mentioned "stages" to me. She just says that when my lymphocyte numbers double within "x" months (forgot how many), it's time to look at treatment. She mentioned treating with Rituximab, but said again that there's no way of knowing if the fatigue is from CLL or not, but the fact that it keeps getting worse suggests it. In fact, like other people here have been told by their doctors, she has indicated that the fatigue is probably not from the CLL and there's no indication for treatment yet. I beg to differ. When you are always feeling like you have run a marathon and can barely make it from the store to your car, I for one will try anything because the quality of life I am experiencing is just not okay (I'm 72). Had you been experiencing a lot of fatigue, and have you noticed a difference since starting the regimen? Or, I imagine it might be the case that it is too soon to tell?

@loriskt. Staging of CLL/SLL is interesting, but doesn't really drive treatment. It's not like most cancers. I was diagnosed at Stage 1 and started treatment at Stage 1 for "progressive Lymphadenopathy ". In other words rapidly growing lymph nodes which were evidence of accelerated disease. My disease is almost exclusively in my nodes as my blood ALC has been normal since diagnosis. In fact my ALC was 1.77 when I started treatment. Your comment that you doctor mentioned Rituximab tells me they are not a true CLL specialist. Rituximab is a anti-cd20 antibody that has been proven inferior to Obinituzimab which is now far more widely used by specialists. There are also multiple targeted drugs that are very effective. I'm currently enrolled in a Mayo clinical trial which is working beautifully.

My personal recommendation is that all CLL/SLL patients should consult a true specialist and go to a major academic cancer center (Mayo, MD Anderson, MSK, Dana Farber, City of Hope, OSU, Weill Cornell, Fred Hutch, etc). I see my specialist every 90 days and travel from Atlanta to Rochester, MN to see her. I also have a local Hematologist, but he is more of an emergency backup. He readily admits CLL is not his specialty.

If you go to the CLL Society website and look under resources you'll find a link of CLL doctors. If yours isn't on the list they aren't an expert and you deserve an expert. My 1st Oncologist wasn't an expert and everything he said was wrong. A bit scary when you think of it.

@tomatack
Boy, that's quite a drive you make every 90 days. I went to cllsociety.org and found a CLL specialist, Dr. Stephen Spurgeon, at OHSU in Portland, Oregon who is taking new patients! I live about two hours from there. I will call Monday and see when I can get in. Thank you very much for suggesting that. I have had the oncologist at Kaiser for over a year and I think I may have actually seen her one time.
I hope your ongoing treatment is successful and you live long and prosper!

@loriskt Smart move. This disease isn't commonly seen in local clinics and the treatment landscape is changing nearly annually. The local docs just don't seem able to keep up. I trust you will see a difference. I don't know the doctor at OHSU, but I will offer Dr. Sharman at Williamette is one of the leading experts in the CLL field and well respected worldwide. The most important thing to understand is your CLL's IGHV mutation status. Mutated-IGHV is a good prognostic sign and unmutated-IGHV a less favorable sign (seems counter intuitive, but it's the one time mutated is a good thing in cancer). Both forms respond to the new treatments, but those of us who are unmutated will tend to have more aggressive disease and need more therapy.