Hi, I"m new to this support group. In the last 6 months my husband has been suffering from very debilitating mental and physical fatigue. In 2013 he was diagnosed with CLL, his lymphocytes level are at the moment 7.2 and his hematologist does not consider any treatment at this stage.
He has had numerous tests to find out the cause of his fatigue symptoms, including his heart and all other internal organs and the results came up all negative. His cholesterol and sugar levels are both fine and dispite he's 70 yrs he has been quite athletic until these symptoms started to manifest.
Seeing him in bed for most of the day, unable sometimes even to talk it really breaks my heart!
Can anyone there give me some advice please?
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Jade9
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You might wish to listen to this. I have CLL and have no major issues with it at this point. However my first cousin has just been diagnosed and is suffering with extreme fatigue which is like your husband’s. You might find this video interesting.
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.
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. See Dr. Terry Hamblin’s blog on immunodeficiency
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.
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.
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.
I started Venetoclax in June and within 3 weeks the cramps and fatigue were gone. So for me treating the CLL has solved the fatigue problem 3 times.
Since I recently had a full round of Prednisone and now Venetoclax, Dr Furman currently has 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
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.
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.
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.
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.
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.
Sorry your husband is suffering so much. Has clinical depression been ruled out? Are there wt loss or loss of appetite, or repetitive negative and/or morbid thinking present? In the presence of a known medical condition and its symptoms, depression can be overlooked.
That's a very good point and thank yo so much for bringing it up. Yes, thinking in retrospection his attitude of being a doer even when his physical energy would have been low might have contributed to his physical and also mental exhaustion, and we'll soon consider booking a consultation with a psychiatrist. He's lost very minimal weight as he's forcing himslf to eat even though often has no appetite, feeling bloated & nauseated.
Hi everyone My husband was diagnose with CLL 5 years ago . His counts went as high as 62,000 . Blood work was done every 3 months ... watch and wait . He is still trying to work a full time job , which i can tell is becoming unbearable for him . No treatment has been offered to him yet . More CT scans was done 2 weeks ago , his spleen was enlarged 3 times its normal size , and he has small lymph nodes throughout his chest , and abdomen. His is so fatigue , even with his medications . He has come down now with a cough that is continuous .and has got worse in the past couple of months . No problems with his liver , pancreas , kidneys . Any guidance would be greatly appreciated . His blood count are way down to 24000. Thank you so much
From what you have shared, I suspect that your husband will benefit most by seeing someone with greater experience with monitoring and treating CLL than his current specialist, as it sounds like he is having regular CT scans. CLL specialists have greatly reduced their use of CT scans, having the expertise to monitor the state of our CLL largely without their use, whereas general oncologists are more likely to do them regularly, increasing the risk of secondary cancers in the future - not to mention the financial cost now. Some of us have an arrangement where we see our distant CLL specialist say once a year and our more convenient local oncologist works with our CLL specialist to ensure we get the best possible care.
It's encouraging that your husband's (presumably white blood cell) counts have dropped back so much, but as you'll read elsewhere, there's no particular correlation between fatigue and white blood cell count levels. Severe fatigue is one of the recognised reasons for starting treatment, but only if it is severe enough and other possible causes have been discounted - and there are so many!
Right now, his fatigue will be worsened by that chronic cough. The cause of that really needs to be investigated, so it can be treated correctly. With CLL, we can have great difficulty fighting off infections that others overcome in a week or so. That may mean doing a culture to find out what bug is causing his cough, so that if it isn't viral, the appropriate antibiotic can be prescribed to kill off the relevant bacteria or fungus. That's probably best done by him seeing his doctor and if necessary, being referred to a specialist - who should be put in touch with his CLL specialist, so the respiratory specialist is aware of how your husband's CLL is impacting his immune system
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My husband was diagnose with CLL 5 years ago . His counts went as high as 62,000 . Blood work was done every 3 months ... watch and wait . He is still trying to work a full time job , which i can tell is becoming unbearable for him . No treatment has been offered to him yet . More CT scans was done 2 weeks ago , his spleen was enlarged 3 times its normal size , and he has small lymph nodes throughout his chest , and abdomen. His is so fatigue , even with his medications . He has come down now with a cough that is continuous .and has got worse in the past couple of months . No problems with his liver , pancreas , kidneys . Any guidance would be greatly appreciated . His blood count are way down to 24000. Thank you so much 
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