Absolutely exhausted.

[GD-K]

Tiredness that seems to be associated with CLL just gets worse. I feel absolutely exhausted all the time. I don't get much sympathy from my gp who says I need to pace myself. Can't believe this is normal. Anyone else have the same issues.

[lankisterguy Volunteer]

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.

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See Dr. Terry Hamblin’s blog on immunodeficiency

mutated-unmuated.blogspot.c...

and his comments on fatigue: mutated-unmuated.blogspot.c...

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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...

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The Mayo Clinic has this text explanation of Cancer related fatigue: mayoclinic.org/diseases-con...

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From Patient Power Video: patientpower.info/video/im-...

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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 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.

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Len

[annmcgowan in reply to lankisterguy]

Thanks for your post Len it is most informative.

Stay safe and well

Ann

[stevebran in reply to lankisterguy]

Thanks very much for this really useful post. I know many of us find dealing with fatigue very difficult as there is no escape from it. It can come on instantly and becomes all consuming. I have spent hours and hours looking for insights from published scientific papers and reliable sources and still believe that my own fatigue and QOL will not improve until my CLL goes beyond A0 and I am actively treated. They have nothing to offer in the UK apart from CBT which I have tried but didn’t find helpful.

Stay safe and healthy

Steve

[stewie]

Hi GD-K

Sorry to hear that , is your hb normal (hemoglobin levels ) when you last had your blood taken ?

Stewie

[annmcgowan]

Hi in follow up to Lens reply to you. We often wrongly assume symptoms are all down to CLL, especially tiredness, I did.

I haven’t experienced the type of fatigue some people with CLL do. However, I have been less energetic for a number of years. Probably 2 years, since treatment started. I assumed it was CLL, the ageing process ir down to treatment itself. Following a routine blood test at my GP practice for cholesterol etc they discovered I was very low in iron. I hadn’t even considered iron deficiency assuming this was measured in my bloods with specialist visits, wrongly so, it is not. I have been on iron therapy for a number of weeks now and slowly my energy is returning to normal, age appropriate normal i presume as I am 68. That will do nicely for me.

The point I am trying to make is never put everything down to CLL, age or treatments. Get the normal tests for other possibilities checked out too.

Good luck and good health

Ann

[sandybeaches in reply to annmcgowan]

Low ferritin levels are what caused my fatigue as well, and cannot believe this was not tested even though the fatigue brought me to the doctor before diagnosis. I now have iron infusions occasionally and have my energy back! Only took five years of suffering!

Sandy Beaches ( west coast Canada )

[annmcgowan in reply to sandybeaches]

I know it was 2 years for me. I had a bad cough for 2 years too and GP put it down to treatment until I insisted on an endoscopy. It turned out to be oesophagitis which was treated and cough disappeared. Learned later and cough beyond 6 weeks should be investigated for osophagitis. Not much faith in GP since then.

Take care

Ann

[1962jns in reply to sandybeaches]

Are iron infusions safe with CLL. My ferritin has been low for as long as I’ve been tested for it. I take iron pills but they really don’t help. My oncologist said she would do the infusions. My other iron panel blood tests ok.

[sandybeaches in reply to 1962jns]

I do believe iron infusions are given to CLL patients when required, and patients are monitored for reactions during the infusion. It is very difficult to raise low ferritin levels with oral iron supplements alone.

If your doctor has recommended this type of treatment, I would definitely discuss your concerns.

Wishing you the best.

Sandy Beaches

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Rule out the obvious and get your thyroid tested.

[sun_flower]

Yes l do yesterday l felt so fatigued l couldn't keep going even though l am shielded at home and using far less energy, its a curse, hopefully you will feel better soon mine come in waves out of nowhere 😪

[mkawass]

Hi GD-K,

My father has CLL. For his case, CLL causes anemia , low levels of red blood, hence low levels of hemoglobin since the cll cells overcrowd the bone marrow. he had 3 blood transfusions before he started chemo which helped him move around. And also the Cytokines are at play. But after chemo, all the fatigue is gone. Check your blood test and let us know your hemoglobin levels

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I started taking a very small dose, 5. mg of Adderall in the morning so I can get the housework, laundry, and shopping done. Otherwise I can barely move most days.