I've had CLL for almost 10 years on watch and wait. I had low energy for a couple of years before I was diagnosed, but it has become much worse over the last 2 or 3 years. I also catch any virus going and even a cold drags on for 7 or 8 weeks leaving me feeling more as though I have flu than a cold. My blood nurse doesn't seem to thinks it's a worry, even though it impacts my life a great deal. Has anyone any helpful advice on how to raise energy levels and maybe keep from catching so many viruses. I take beta glucan 400mg, ,vit d 1000iu, high dose vit b complex, a probiotic, a black garlic tablet daily.
Thanks in advance
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Have you tried a daily exercise? Did wonders for me... although treatment was the only thing that really lifted my extreme fatigue levels, which thankfully has never returned in 7 years...
Might also get your immunoglobulin levels checked by your hematologist, it can be augmented if low to prevent serial bacterial infections, primarily...
Chris, I am curious to know just how fatigued one has to be before treatment is initiated for this symptom, if there a no enlarged lymph nodes on scan, and hgb levels are low normal? No other reason to be fatigued, as all tested, walk as well as I can, but really interfering with life and work related obligations.
I don't honestly know... in the U.S. a CLL specialist they might start early treatment for fatigue (sick), but I'm not aware of many getting it unless they have other CLL related issues.
Have you done a sleep lab? Even with no nodes showing you can still have sleep apnea. I think they would require that prior to any treatment discussion .
Also for some CLL patients treatment doesn't make a huge difference in overall fatigue... like it did with me.
Important to remember also it is not actually fatigue in the true sense, its cytokine/chemokine 'sick' response... like flu without the temperature.
Did a sleep apnea test and it was ok. Had every system tested and all fine, or levels good for my body. Since the fall I have felt sick almost every day, drag myself around, and find this is really getting to me. Unfortunately cannot try an adhd medication due to contraindication with one of my meds. I am just beside myself at times as the fatigue is the worst it has ever been for the past few months.
Hi, I was feeling like I was coming down with flu constantly, fatigue, nausea, sick. Went to Mayo in Jacksonville, no node involvment, ALC only 30, but I was able to get on a trial and have been on acalabrutinib for almost 2 years, and doing so much better. If your doc won't start treatment, get another opinion. Don't settle for a terrible quality of life.
CLL related fatigue is an issue that all too many CLL doctors / specialists fail to understand just how serious and debilitating it is for the patient. Some even refuse to recognise that fatigue is CLL related at all. I would suggest you seek out a second opinion on this as long term serious fatigue should be considered a prime (but not the only) factor in consideration of starting treatment. As others have pointed out treatment is not certain to resolve your fatigue but many find that it does, or at least significantly improves it. There is a natural reluctance to "cross the treatment bridge", however many find that life on the other side is so much better than living with the growing multiple symptomatic issues that affect every day life. Personally I am in a much better place post treatment (Ibrutinib) and with hindsight wish I had had the opportunity to start it much sooner than I actually did. Good luck.
One thing to remember about treatment: if you were to go with either Ibrutinib or Venetoclax, fatigue is listed as a possible side effect for both. I don’t know about other forms of treatment, but just keep that in mind. It could possibly make your fatigue worse. But of course everyone is different and some get by with no side effects at all!
It seems like time to post this long reply again- I beg forgiveness from those who have seen it multiple times:
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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. 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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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.
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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All 3 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.
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 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.
Thank you for that. At my checkup at hospital last week the locum specialist suggested a ferrin test after I told her I was feeling a little better after taking Spatone Iron supplement for a few days. This is the first time I've even heard of this. Maybe ferrin and thyroid tests should be done routinely for CLL patients who complain of fatigue.
Great discussion. Fatigue is relentless. But you may also want to get your TSH levels checked. Thyroid issues seem to be common on CLL and can have great impact on fatigue.
Sounds exactly like myself sorry for the no energy. I’ve been there for 10 years myself ! I get a b12 shot every other week helps for sure I take 15 mg vita C as well! Giving serious consideration to bruntinib for 6 months to see how it works. If I can lose the nodes and spleen size that’d be great and maybe a little more energy I’d be super happy
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So much to learn
So much to share returning from Scotland for CLLAN Horizon and iwCLL
Feeling tired, and not having much appetite.
Falling apart mentally & physically, hate this disease, no energy..can't do the things I use to do
