Diagnosed with CLL in Aug 2013. Numbers are good and no treatment started yet. I have fatigue every
day to the point that I don't want to do anything. Oncologist says the fatigue is not from CLL but everything I read says that fatigue of one of the symptoms. Does anyone have any suggestions??
I agree with Jeff...
When I was diagnosed in 1998 CLL fatigue wasn't in the 1980 Merck Manual my doctor was referencing... 
This is probably one of the most discussed topics on this forum... you need another opinon, perhaps seek out a CLL specialist... not a general oncologist... even a haemetologist would be better...
~chris
Unfortunately that response (your fatigue is not from your CLL) is too common from many oncologists and GPs. CLL haematologists/specialists should acknowledge that your fatigue is real and could be due to your CLL, because "significant fatigue (ie, ECOG PS 2 or worse; inability to work or perform usual activities)"* is one of the recognised severe constitutional symptoms that can trigger treatment. (The others are night sweats,fever and weight loss.) Medical understanding of the cause hasn't advanced much, if at all for many years. Basically there are a few of theories, but no consensus.
It's pretty common for people that have had treatment finding that they've got their lives back, not having appreciated how their fatigue had imperceptibly increased over the years until it was severely impacting on their quality of life. For those of us with good numbers and not needing treatment, yet struggling with fatigue, I'd say that the best approach is to work with your GP to eliminate other possible causes and once that's done, if you are not significantly better and if you can't get any help from your current oncologist, seek a second opinion as Jeff and Chris suggest.
Check the community posts below for more information, including tips on what you can do that may help you:
healthunlocked.com/search/c...
* Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia:
a report from the International Workshop on Chronic Lymphocytic Leukemia
updating the National Cancer Institute–Working Group 1996 guidelines, updated Dec 08, 2008, section 4. Indications for treatment - 4.1. Primary treatment decisions.
Neil
Great answer Neil.
Thank you Neil , I'm confused to this day I've never had a night sweat or lost weight had a two day fever. 8 years ago .Doctor said stage 2 treatment right away. I've been well but wonder how long I could have been in w+w. Best wishes to all.
Diagnosed in Jan 2014, bloods good and in watch and wait. However, fatigue and other health changes receive that shrug of the shoulders and "not related to CLL". I looked at a video on here "wonderful video" by Prof Fegan, Cardiff University. It made me feel things were not "in my imagination". I found it inspiring.
For me, I am selective in what I eat, exercise, listen to me body and rest when needed and do my best to "get on with life". Not easy if you are working or have children to care for. There seems little understanding from most of the impact of a CLL diagnosis.
I am feeling good at the moment, so take heart.
The advice from others is excellent.
All the very best
Seven6
I have a lot of fatigue too and have had it for a long, long time. My white blood count was very slow to go up but the fatigue was always there. I would go to the doctors and say I am OK but I am so tired all the time. The docs would say they didn't know why. I agree with you it must be the CLL and it does no good to tell us it's not. It just make you feel like your crazy and your not. I was tired even though I was happy. This was not in my head. A better answer would be it certainly could be the CLL. Everybody is different. For example one glass of wine and I am done. (I do not drink at all anymore) Two glasses of wine and Its like I had the whole bottle. We are all different. Take good care of yourself.
There doesn't seem to be any correlation between ALC and fatigue; people with extremely high counts can have little to no problems with fatigue while others with very low ALCs can really struggle with it. I was really struggling with fatigue nearly always in the afternoons and sometimes mornings and my ALC was under 5.0. Fatigue levels may relate to how active the CLL is (perhaps the CLL is pumping out lots of Immunologic messenger molecules i.e. Cytokines), the total tumour burden, levels of inflammation/infection or any or all of these along with other factors...
I could not agree more. My white blood cells are slowing increasing but I am always fatigued.
Hi, I was diagnosed about three years ago and am in w&w. Have intermittent fatigue daily, hard to get motivated to do anything unless I have to. I really like my hem/onc but she doesn't seem to be too impressed. I know what you mean exactly. It's good to read that others are having the same experience and I'm not crazy.
Just returned from Dr Clive ZENT now at u of Rochester, formerly of mayo clinic. Dr ZENT treated me on my first round of CLL treatment and since it was time for round two I saw him again. The subject of fatigue was on my list. I reported overall loss of energy and difficulty waking. He described CLL associated fatigue as start out fine and then drop. Not what I am having. In this case, with CLL I believe one aspect of the fatigue we experience is CLL directly but we may need to look to other even associated, related causes as well. Fatigue from medications taken for other conditions, interrupted sleep due to sweats, worry, pain and even some depression. While these may not BE CLL they are real and perhaps due to CLL indirectly. relief can often be found by first examining what else is going on in our life . This may require further exploration, even medical evaluation all the way to exercise or relaxation. Anemia can cause exhaustion, as can infection even other cancers. There are two opposing theories of medical diagnosis. Okams razor says one chooses the most obvious. While Hickams dictum says a patient can and often does have as many diseases as he pleases. Over the years we often are reminded that we are not CLL nor does it define us. It may however play a large role in how the rest of our life looks. It's just not necessarily the ONLY thing wrong with us. in fact I'm not sure one can ever separate the various causes of fatigue in CLL whether due to CLL or because of what CLL does to us.
Fatigue was ever present prior to my diagnosis and is even worse post FCR (finished end July ). My blood tests show ever decreasing cell count hoping upsurge soon. Anyway Haematologist confirmed fatigue as an outcome of low bloods. Onwards and upwards.
Mike
Twining,
This is just a bit preliminary--I'm only now testing what seem to be strong results--but I'm finding that acupuncture is truly relieving my fatigue. In fact, it's restoring energy. Not all of it, but enough to get me to make my bed in the morning without sighing.
I used to be able to go all day and into the evening. I worked hard. I never took a real "sabbath," in the sense of a day of rest. It took a few years, but now, six years into my diagnosis, I'm still at W&W, my numbers are creeping up very slowly, but fatigue has been knocking me over. I've been missing many of my regular afternoon water aerobics sessions, many evening 12-Step meetings--a big loss for me--and pretty much eliminate evening concerts and theater performances from my life. I have felt, in 12-Step lingo, that I'm powerless over CLL and my life has become unmanageable.
Having read about acupuncture for symptoms of Chronic Fatigue Syndrome, I began regular acupuncture sessions with a trusted provider I've used in the past for other issues. Wow. After about three weeks and six sessions, the results are amazing. I made it to my Tuesday evening meeting without wanting to sleep. Made both of the water aerobics classes so far this week. And I plan to get to my Thursday 6pm meeting tonight, inshallah.
It's certainly worth a try. It's not just placebo. My ortho doctor actually recommends it. He has a brother who uses it regularly in his large animal veterinary practice. As the doc says, "Horses are not subject to the placebo effect."
Good luck. If this energy recovery continues as it's begun, I'll post on this site for the whole group.
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 usual 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...
Both times my CLL progressed I got severe fatigue and 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 but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.
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 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 me entirely.
So is it CLL and an opportunistic infection?
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.
Twining
Can u please update current status. How do you manage fatigue?
I am male66 dx 18months ago. Experiencing fatigue which has increased in last few weeks. Feel stress in jaws, no strenght in body, dry tongue, droopy eyes and desire to keep lying in bed.
vinnet
I often get tired. Need to give my self an umph to get out of bed. Get tired around four.
Greetings , I was diagnosed in June of 2015 and also had terrible fatigue, Finally got the doctors attention. recommend getting test for Vit D , B-12 and have your thyroid checked. Once i got started treating all three of these I am feeling better.
james
CLL and CFS
Fatigue with CLL
CLL and Sjogren's
Year after CLL diagnosis~
Fatigue
