CLL Support Association
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Hi I’m 42 and just received a diagnosis of cll last week. My dr called me with results and I have appointment on dec 5 so I really am just trying to figure everything out. My main question is about fatigue. I can’t go a Day without having to nap. Is this normal and does it get better? Thank you

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I am 43 and was diagnosed shortly after my 42 birthday. Fatigue is my biggest issue and I have to take a nap most days. Many people with CLL have significant fatigue. I am in watch and wait. But I have asked others if their fatigue improves after treatment, many have commented that it does. On the other hand, some treatments can cause severe fatigue. Significant fatigue that substantially impairs your daily activities is one of the recognized reasons to initiate treatment. I am trying to gather some stats regarding the number of people with CLL who have initiated treatment solely because of severe fatigue. Hang in there. There are great treatments coming out every year.

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Thank you so much for your reply. I didn’t realize that severe fatigue is a reason alone for treatment. That’s interesting.

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Hi. Yes I was very tired. Not so much now (I’m nearly 8 years I’m remission) but still have to have a nap sometimes.

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Hi and welcome to our community, where you'll unfortunately find plenty of fatigued company. Sadly, CLL seems to regularly bring with it serious levels of fatigue that aren't reflected in blood test results. That has the challenging result of many of us being dismissed by our medical teams as having no basis for fatigue that can seriously affect our quality of life. CLL specialist do appreciate that fatigue can frequently accompany a CLL diagnosis, though there's not much they are prepared to do unless it seriously impacts us, when it can be a trigger for starting treatment.

Many of us have found some benefit from ensuring our vitamin D and B12 serum levels are in the normal range, that we are getting sufficient iron and folate in our diet and perversely enough, improving our fitness. Going for a walk is probably the last thing you feel like doing when you are feeling fatigued, but provided the fatigue isn't too overwhelming, sometimes just getting some exercise can lift our fatigue. It's important to have a thorough check with your general doctor to ensure that there is no other reason for your fatigue as there are so many potential causes.

Here's some past posts on fatigue: healthunlocked.com/search/f...

Neil

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Thank you for your response. I have been going through a lot for two months before my diagnosis. Started with pain in my lower left abdomen and elevated wbc which after ct scan showed a cyst on my ovary and gp sent me to er. Ultrasound showed no blood flow to cyst and they did emergency surgery only to find it wasn’t twisted and they removed the cyst but kept me in hospital for three days because of rising wbc while on iv antibiotics. Finally started going down and sent me home and gp scheduled colonoscopy and scope which showed nothing. Pain has continued and fatigue has gotten extremely worse. But even though this is not the diagnosis I wanted it was a relief to finally have one and know I’m not crazy.

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Hi jbuckner-75. I just wanted to share that I too was recently diagnosed (last month) and am also 42. The first few weeks were unbearable as I had no information other than my CLL label. I was a weeping mess as I have 2 young boys and Dr. Google told me I only had 5 yrs left if I'm lucky! The wait for my CT scan and FISH results combined with my unrelenting online research about my demise stressed me out so much that I was overheating, losing weight, and feeling so exhausted. I was certain that my fatigue was due to my CLL, but I'm almost certain it was stress induced. I still have moments of hypochondria - currently dealing with a chronic cough, sternum pain and new lymph node discoveries, but having met my hematologist on my first consultation has calmed me down. People here assured me that I would soon get a better handle on my symptoms and uncertainty, and they were right. Hopefully your fatigue is a result of sleepless nights and worry, but if it is CLL related, then there are certainly ways to manage it (others more knowledgable than I am will soon give you some good tips). Welcome and know that you are not alone. This is safe and hopeful place to express your concerns and get informed.

Ash

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Dr. Google still says 5 years? That's what it told me in 2003. I'm still here. Look at cllsociety.org and the links listed on the home page for reliable, up to date information.

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Hi, I'm in the same boat as you. I got the bad news last week that I have CLL. At the minute I'm researching everything about it and asking why me. I'm 41 cyclist so I'm pretty fit, fantastic diet, don't drink that much, never smoked.

I don't really have much fatigue throughout the day (my WBC count is probably not as high as yours). After lunch I sometimes get tired so I take a Vitamin B complex tablet which seems to help.

I'm starting back to the gym on Monday to try and put on some weight, as I'm guessing in the future I'll loose it due to illness.

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Alastair - see the link above. Much better that searching google!

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Thanks will have a look

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Hi Alastair,

Welcome to our community (hope I’m not too late with that - cant find previous posts from you). I just wanted to respond to your “researching everything” statement.

Please be careful with Dr. Google, he never forgets so there is some wrong and misleading info he will throw up. Try not to panic (easier said than done), typically CLL is a slow burner and treatment can come years down the line.

CLLSA is a good starting place and will point you to a few other places as well. The CLLSA is UK based and runs three or four meetings a year around the UK. I’ve found these a great help (along with this site).

best, rob

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Hi Rob,

I appreciate the advice. Yes I just join but have now wrote an inductory post introducing myself to the community.

I'm trying now to research from reputable websites like CLLSA.

Thanks,

Alastair

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I can't speak to the fatigue (I don't really have any yet), but just wanted to say hello from one newly diagnosed under-50 (I'm 35) to another!

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Jbuckner-75

I was diagnosed in July this year after my routine annual blood work noticed my wbc elevated and was trending with further blood work. About a year or so before diagnosis I was getting very fatigue in the afternoons at times and thought I was fighting a bug. I’m pretty sure it was the cll Because I had elevated blood counts then and being someone that worked out every day and sometimes twice a day I used to have endless energy. I find now I work around it when I’m tired I nap and try to get a good night sleep 8 ours minimum. I also believe stress which may impact our immune system plays a role. Shortly after being diagnosed my stress was thru the roof and I was always tired. I went away to Europe on a trip we planned a year ago in September which got my mind off of cll and walked between 5 to 10 miles a day eating and drinking lots of wine. It’s not easy to think about it but I know worrying and stress adds to the fatigue. Hope that helps best to you.

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I was diagnosed in July 2016 and am now napping twice a day. I am fortunate that I am retired. I could not make it through a whole day at work. Mornings are the best.

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Are you still on w&w?

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I was supposed to start treatment at the end of October. After one infusion of Gazyva my numbers dropped so low that we suspended treatment, and I am now back on w&w. My doctor said he had never seen quite that reaction from one 10 percent dose of Gazyva. I will be getting a second opinion before I start treatment again. I still have the fatigue. I have learned to do the heavy duty stuff in the mornings when I have the energy.

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