Can anyone offer me any information about this? It occurred during an illness and my specialist dismissed it as a 'lab didn't process it right' but has stayed down.
I have been on W&W for just over 2 years, (with stable, and not alarming progression, in Stage 0).
ALC was found at circa 30 on diagnosis and was not present 4 years prior the last time I'd had a CBC to reference it with) and then continued on a pretty stable upward trajectory.
I've had a really good run after making great lifestyle changes to look after myself (as was experiencing B symptoms at the time at time of diagnosis). Been feeling pretty good and have prioritized staying really active/fit and I work full time I live on my own, but manage well overall. I had an unknown "likely virus" late last year that put me in hospital (high fevers) after I'd had repeated incidences of the same prior, but that was the worst of them (felt truly awful) but the identified cause was not found so it was classified as likely viral but matched to no known viruses (including Covid). It corrected itself, yet I've never felt quite the same since. It's summer here (in NZ) so I know heat and humidity is a factor for me, but I'm not managing the same normal as before. My tiredness has increased and I'm sleeping up to 11 hours at night to compensate. I'm night sweating despite having air con on at night to keep the temp cool. I'm really struggling with the same level of activity I previously breezed through (feel like I'm struggling to breath - yet Oxygen saturation levels are showing as normal. It feels like I'm riding in altitude, which I have done before, but without being in altitude.!).. I have no other known health issues factoring.
Yes, I'm off for a chat to my GP this week about this, and following up to request a CT scan my haemotologist suggested I get if there were further issues after the aforementioned hospitalisation...
So I guess I'm posting here, in this wide web of CLL wisdom, to see whether this story resonates with anyone else?
Sue
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I became anaemic after a virus some years ago. Had to have a 3month course of iron to get me back on track. Also felt tired, night sweats for a brief period, no energy. Hope you feel better soon {{hugs}}
The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for re-activation of common childhood diseases, so here it is again.
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Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue. We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications.
Why do CLL patients experience fatigue? Dr. John Burke and Dr. William Wierda, renowned CLL experts, explain the potential causes of fatigue in CLL patients in this video: patientpower.info/video/wha...
Joseph writes in this question about fatigue. He says, “I sometimes have days where I’m extremely tired. Mornings are okay, so I’m able to shower and take care of myself and my home. But by noon, I’m exhausted. I feel I have no quality of life. Just walking across the room, I feel unsteady. Is this fatigue all about my CLL?“
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Dr. Thompson:
This is a really good question. Fatigue is, by far, the most common symptom that patients with CLL have, and the reason for this is that the CLL cells themselves are producing these chemicals called cytokines, and also, they induce the immune system to produce these chemicals called cytokines that are the same chemicals that you make when you’ve got an infection, like the flu. The symptoms that you have when you have the flu, the exhaustion, the fatigue, not being able to get out of bed, this is a common complaints that patients with CLL have. This can happen even when the CLL is, what we call, early stage and doesn’t need to have specific treatment for the CLL.
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It can be a big frustration for patients, and it can result in a significantly impaired quality of life. Now, that having been said, fatigue is a somewhat vague symptom, and it have many potential causes, so I would strongly encourage any patient for whom they have significant amount of fatigue, like you, where it’s effecting your quality of life to a significant degree that you should go and see your doctor, be thoroughly evaluated to determine whether there are any other causes for the fatigue.
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We see many patients who may have undiagnosed sleep apnea or an undiagnosed endocrine disorder, or any number of other things that can cause fatigue, and treatment of those will make it go away. In many cases, those things are not identified, and it is determined, ultimately, that it was the CLL that’s responsible. Now, in that situation, you have two options. You can take symptomatic treatments.
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Some of our patients take stimulant medications to help them with the fatigue, like Ritalin. We also have a clinical study at MD Anderson with a drug called ruxolitinib or Jakafi that is approved in other types of cancers. This drug actually blocks the production of these cytokines quite effectively in many patients, and we’ve noticed at least half of our patients have a fairly significant improvement in their fatigue levels on this treatment. The other option is to receive treatment that’s designed to kill the CLL itself, and which of those is most appropriate depends on your individual circumstances. I would strongly encourage patients with significant fatigue to talk to their doctor about it, make sure it’s not something else, and then discuss what options might be available to help them with that fatigue, because it’s awful going through life feeling exhausted all the time.
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Now to my (Len's) personal experience:
All 4 times my CLL has progressed I’ve gotten severe fatigue and weakness in my thigh muscles, possibly due to a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.
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I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically.
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In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 (an infant disease called Roseola) was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed my fatigue entirely.
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I was on Idelalisib from Dec 2012 to May 2015 and then switched to Ibrutinib until Feb 2016 and had full strength in my legs. I was able to ski like a 40 year old (at 68 years) but after being off the drugs for 8 weeks my ALC was only 43 but the muscle weakness in my thighs returned. We have tested for all the above causes but cannot find a smoking gun beyond a drug resistant HHV-6 at log 4 x normal. I've been on Acyclovir daily since 2012, but that has no effect on the HHV-6.
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I started Venetoclax in June 2016 and within 3 weeks the cramps and fatigue were gone. So for me treating the CLL has solved the fatigue problem 3 times.
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When I had a full round of Prednisone and then Venetoclax, Dr Furman had me taking a prophylactic medicine Atovaquone to prevent my contracting Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system
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So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.
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Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.
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Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.
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And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.
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Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications. Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.
Thanks for sharing that info @lankisterguy 👍 They looked for every known bacterial or viral infection at the time, including a lumbar puncture (to be sure) and came up without cause. I did recover afterwards, although never feeling quite the same, but the bad fatigue and sweats have just been around over the last 2-3 weeks (Iron and B12 are just fine). I will explore further with my GP this week, and I have some additional ideas to discuss, and investigate further to look for some clues and/or potentially rule out some other things.
Len, Thank you for this thorough and useful list of resources! I struggle with HSV2, and possibly other viruses and have not been able to find enough information about it.
I take acyclovir while I’m on V and A, but I think it impacts my blood negatively- low RBC and low HGB.
Viruses have evolved with humans for millennium and are here to stay, but for the immunocompromised they are particularly challenging.
I am hung up on the fact that they haven't a clue about your presumed virus. What if it is bacterial or fungal or parasite? Toxoplasmosis type stuff. Do you have animals? You say you were tested for some bacterial, but often they come on post-virus, so maybe you didn't have it but do now. I would definitely check for the various issues Lankisterguy recommends, like epstein barr which can knock you flat, but wouldn't think such viruses would lower WBC which is why wondering if it is something altogether different. Bacteria would likely lower your iron level (not sure about fungal, parasite). Good luck solving this mystery -- please keep us informed.
Fatigue can occur with CLL patients but there could be something else going on. Along with your regular bloodwork, try having your Vitamin D and iron/hemoglobin checked to make sure they're okay. Mine were extremely low after a 2 month long bout with diarrhea and fever. This was before I had treatment.
Hello friend, so sorry to hear of your travails. The first thing that came to my mind was your thyroid gland. My sister-in-law experienced many of the symptoms you listed upon her return to the US after spending 4 months in Malawi Africa on a photography assignment. She had taken a new (at that time) prophylaxis for malaria and so her doctors in Boston focused on that. She could hardly get through each day and was sleeping excessive, too. Her case was so puzzling that she was referred to the medical school at Harvard. One doctor wasn’t distracted by the malaria drug and trip to Malawi and thought to check her thyroid. Bingo! That was the problem and she returned to good health with treatment. Please let us know how you are getting on. I hope your situation can be resolved soon. Sending rays of support from snowy Michigan, US. Carolyn
I repeated my bloods 2 days ago, and they went from all time low to all time high in two months. Had a good chat to my GP yesterday and her concerns were more about this, and the night sweats I’ve been having. She’ll link to my specialist for next steps advice and advise, likely CT scan follow up next step.
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