Doctor advice requested.

[Swarupkbasu]

My wife is having CLL in stage 1. Some times she goes to sleep for hours togather. Is it normal in case of CLL patient? How to wake up from sleep. Please advice now. As I am worried. Please advice.

[ygtgo]

Hi Swarupkbasu

Is your wife prone to being fatigued ?

Fatigue is my main symptom of having CLL.

I am stage 0 and I can go out like a light ... it's not 'sleep' or feeling tired I hate the feeling of suddenly 'jumping' awake and finding myself sitting at the PC still holding the mouse.

It can come without warning ... my wife says that I wouldn't wake up if a marching band burst into the room !

Take you time and browse the site, there are some good posts on fatigue. If you would like to give some more details about your wifes symptoms etc, it will give the members on here a better chance of helping you.

ygtgo

[hsouter in reply to ygtgo]

It is important to investigate other possible causes of fatigue—some are “secondary” to a primary CLL diagnosis. However, there are others that could be unrelated. Anyhow, it is something that perhaps may be treated...

H

[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. 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

mutated-unmuated.blogspot.c...

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

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.

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

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?“

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.

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.

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.

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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The following was submitted to CLLForum (cllforum.com )by Mark: cllforum.com/reply.php?topi...

There are many reasons for people to feel tired, and CLL patients are not exception. One the common reason is an infection, and the body is trying hard to repair and rebuilt itself.

Without the crucial process of acute inflammation, the body could not heal itself. All inflammation starts in this acute phase. Whenever your body becomes damaged in some capacity due to a foreign agent, and it responds immediately to repair the damage. In many cases, this reaction goes undetected, or your symptoms are so mild that they are even unnoticeable.

Once the threat (fire) is gone, the body is able to go back to a non-emergency state—and the acute inflammation process turns off. Chronic inflammation occurs when your body has to continuously and unsuccessfully try to get rid of an ongoing (smoldering embers) bacterial or viral infection, fungus, heavy metal and/or chemical contamination. When this happens to you, your body’s inflammation process fails to shut down - and your body is progressively weakened over time because it is overstressed. Pro-inflammatory cytokines are the part of our immune systems that attack and kill cells with oxidative chemicals. If they don’t stop their attacks, they will start killing the good cells that our body needs.

Every chronic disease is an inflammatory disease. No matter what so-called disease you have, from cancer to the common cold, inflammation is a major part of your problem. Most Americans suffer from chronic inflammation, caused by a variety of factors that seriously undermine health and ages us prematurely. Common inflammatory diseases include allergies, Alzheimer's, asthma, arthritis, autoimmune diseases, bursitis, cancer, cervicitis, colitis, cystitis, diabetes, gastritis, heart disease, hepatitis, infections, myocarditis, nephritis, neuritis, osteoporosis, prostatitis, sinusitis, tendonitis and aginitis.

ncbi.nlm.nih.gov/pmc/articl...

Testing for Chronic Inflammation - C-reactive protein is a solid indicator for disease potential. Interestingly, research reveals that chronic inflammation increases the level of C-reactive protein (CRP) in the blood. As such, the American Heart Association and the Centers for Disease Control and Prevention (CDC) jointly recommend using inflammatory markers such as CRP to assess heart disease and stroke risk. Taking it a step further, high C-reactive protein levels may alert you to the potential for other diseases, not just heart disease and stroke. CRP is a simple blood test. While the CRP test does not specifically diagnose a particular disease, it is a general marker of infection and inflammation that alerts medical professionals that further testing and treatment may be necessary. CRP tests can also tell you if you’re getting better, or if medical treatments and therapies are working.

Len

[Awksom in reply to lankisterguy]

Can you shorten your reply to just the salient points. I don’t mean to be rude but you tend to lose the reader with your same extended response listing every time. Thank you.

[PaulaS Volunteer in reply to Awksom]

Len is responding to different people each time, Asksom. He usually starts that post with the same sentence so you can easily recognise it. If you've read it before, just skip it. There's a lot of valuable information in it, that can be very relevant to some people.

Paula

[Awksom in reply to PaulaS]

Ok got it, my bad, didn’t mean any disrespect just that the same long info rendition when looking for specific information.

[Mitchlaprade]

I have had cll since 2005. I have always complained about fatigue to my doctors and they seemed puzzled. There is much information about fatigue. Sometimes it hits me all of a sudden. So yes tiredness is normal in my case and don't let the docs tell you no. I have a nap every day too.

Good luck

Mitch