I'm new here

I was diagnosed with CLL in July of 2015 at the age of 50. It was found through routine blood testing. The oncologist believes that I have had CLL for 3 years. Of course, like most people, I freaked out at first. I have had no symptoms except for an increasing white blood cell count (23,000) until now. Recently I have started experiencing extreme fatigue. My doctor doesn't seem to think much about this since my ALC was stable at this visit. Just wondering if this is normal or if I need to get a second opinion.

[AussieNeil Partner Administrator]

Hi Colleen and welcome to our community,

Good to hear that you have no symptoms other than what led to your diagnosis, which incidentally is how most of us discovered we had CLL. Sadly you have plenty of company here, in having a doctor dismissive of fatigue when your ALC is stable and other blood counts are fine. It's a pity that very few of the medical fraternity don't appreciate that blood lymphocyte counts don't correlate with CLL related fatigue. Hopefully your specialist accepts your extreme fatigue could be due to your CLL and supports your efforts - probably best done through your doctor, to reduce your fatigue. Many in our community have found that checking their vitamin D in particular and sometimes their vitamin B levels and using supplements to bring them into normal range can help, as can increasing exercise levels if you aren't too fatigued to do so. There may also be other non-CLL related causes of your fatigue, such as Sleep Apnoea and/or Thyroid Function, a degree of anaemia (though apparently your red blood cell count and haemoglobin are fine), so checking your B12/folate and Iron studies will verify that . Making certain that you aren't impacted by any of these should also be ruled out or corrected as appropriate.

Here's a starting point for CLL related fatigue:

healthunlocked.com/cllsuppo.....

And here's a list of posts in response to a search of CLL and fatigue:

healthunlocked.com/search/f...

I hope you find the means via these shared tips to get your life back.

Neil

[Hidden in reply to AussieNeil]

I found out today that my vitamin D level is at 15. I'm sure that is the culprit. B12 and thyroid are fine. Maybe now I can get back to being "me."

[AussieNeil Partner Administrator in reply to Hidden]

Fast work Colleen!

There are two different measurement units for serum vitamin D with what's considered normal ranges as follows:

32 - 100 ng/ml

60 - 160 mmol/l

On either scale you are woefully low! So good news - you may soon be feeling far less fatigued!

Neil

[BeckyLUSA]

Welcome to our community! Sorry you have the diagnosis but you will find great support in this group. I too am newly diagnosed and still in wait and watch mode. You are in good company here.

About your fatigue, I agree you should check out other issues that could be causing the fatigue; however, I'm fortunate that my oncologist does not dismiss it. He acknowledged that most doctors disregard it, but says his experience shows otherwise. If that is the only issue you are worried about, I would not seek a second opinion just because of th fatigue issue. But if you don't feel comfortable with your specialist for other reasons, by all means get a second opinion.

[Salohcin in reply to BeckyLUSA]

Cheers BeckL, it's nothing too much at the moment just more that you know your own body when things are not just right. I'm just starting on the global challenge at work, a fun challenge where you need to complete of a minimum of 10,000 steps per day. My boxers dogs love it lol. I feel better already for starting this.

[CLLCalifornia-USA]

I found that yoga helps to relax the mind and body. Especially that chattering monkey that won't stop the "what if" in my mind. Along with my two yellow labs, it starts my day off feeling well. Enjoy your boxers☺️.

Kindest regards,

Sally

[Salohcin in reply to CLLCalifornia-USA]

Thanks Sally I might try that, I have done Pilates for many years but was thinking about a change

[BCTexas]

Welcome to the place nobody wants to be a part of... but we are all lucky to have. Most people with CLL experience fatigue this is common. It's always good to get a second opinion especially if treatment is needed. I have been on W&W since last September. I'm going to MD ANDERSON next week for a second opinion to see if W&W is the best thing for me.

Best wishes,

BC

[Salohcin in reply to BCTexas]

Yeah it does seem strange ..... You have cancer but we are not going to treat it bi guess they know what they are doing. I've been fortunate I think as I'm under my specialist rather than my doc but I have lots of questions, many raised by people on here which I'm grateful for that I want to ask him

[Hidden in reply to BCTexas]

I went to MDA for a second opinion when I was diagnosed. They were wonderful. I am seeing an oncologist in my home town but if I ever do need anything major, I will go back to MDA. I saw Dr. Ferrajoli.

[BCTexas in reply to Hidden]

That's the same doctor I will be seeing next week Dr. Ferrajoli . How was he?

I was told I would be there all day on the first day. Luckily I don't live too far from MD. Do you live in Texas?

[Hidden in reply to BCTexas]

She was great. She has a good team. You will be there all day and possibly more than one depending on test results. I live in Mississippi.

[Hidden in reply to BCTexas]

Definitely plan on all day for an initial visit, maybe 2.

Bring copies of any old blood tests you have which show red & white cell counts. Going back a decade or so if you have them. One of the pieces of information which speeds the diagnosis is if you have enough history so they can determine the rate of white cell count doubling time.

[BCTexas in reply to Hidden]

Thank you I have all of my records for the last 9 months from my current Oncologist. I just want to hear MD say we agree you should be on W&W. Also nobody can figure out why I am experiencing pain in my groin area. It comes and goes..My regular doctor I see doesn't know..my Oncologist doesn't know and most people I talk to that have CLL do not have this as a symptom. Some say they do. I think it may be swollen lymph nodes but I'm not a doctor. I have had everything you could think of done..a physical..blood work..CT scans..I had everything done and besides being a little out of shape and having high Cholesterol I'm in good health..minus the CLL

BC

[Murphy1021 in reply to Hidden]

Hey Colleen. I found this post by searching site for people in my area. I live in the Jackson area. Anyway, I'm seeing Dr. Ferrajoli for the first time next Monday as well. Let me know what you think about her.

[Hidden in reply to Murphy1021]

Hi Murphy! Dr. Ferrajoli is wonderful. I just saw here at the end of July and have decided to continue with seeing her instead of my local haemotologist. I have learned how important it is to see a CLL specialist as most don't know enough about the symptoms to help. As a matter of fact, the doctor I was seeing told me that my extreme fatigue is all in my head. Of course, Dr. Ferrajoli confirmed otherwise. It is worth the travel. I take someone with me and we make a mini vacation out of the trip. I don't know anyone else in Mississippi that has CLL so was glad to receive your message. Let me know how your visit goes.

[Murphy1021 in reply to Hidden]

Thanks Colleen! I'm driving today to Houston after my sons soccer tournament. My appointment is early in the morning. I'm assuming a one day visit so I came alone so my wife can get my kid to school and practice etc. I will definitely let you know how things go. By the way, if I didn't mention, I live in the Jackson area. Flowood to be exact.

[fayeander]

Hi ColleenS,

I am fairly new to the Support Association, but I can speak first hand in saying that fatigue was my number one symptom. I am 69 years old and was diagnosed in May 2015. My WBC had been elevated for over a year, but I did not know that. I had to crawl out of bed to go to work and in the evenings after work I would sit in my car until I rested to drive home. Even walking around my office and in my home was a chore.

I took six months of chemo, completing treatments in December 2015. I never completely recovered with my energy levels, but felt 90% better. Unfortunately, I am beginning to feel the same fatigue I felt a year ago. It's not as advanced as before, but I can tell it's the same weak, tired, aching feeling that I had before the treatments. I go to my oncologist tomorrow. I continue to work, help raise my 2 granddaughters, stay active in church, and at this time I help care for my older sister. I'm one of those people who does not listen to her own advice nor do I listen when my doctors tell me to rest. A woman has to do what a woman has to do!

My Mother had CLL and she was the first family member diagnosed with it. Now I have it.

My advice to you is to rest as much as possible, you may continue to feel the fatigue. But the rest will not hurt you so go for it. Drink water! Start or continue with your exercise program.

Keep a positive attitude! That's the key to beating this disease!

[Salohcin in reply to fayeander]

Thanks fayeander, wow you seem to have been through the mill and still not out of it yet. My tiredness is no where near those levels but I suppose it's a progressive thing. I hope you get the right treatment very soon

David

[BCTexas in reply to fayeander]

So true about having a positive attitude

[goneblonder]

Hello and glad your stable..

[Peggy4]

Hi Colleen and welcome. Certainly fatigue is one of my problems and seems to come over me in waves. Some days I cope better than others and it doesn't seem to tie in necessarily with my workload.

Nice to have you on board, even though I eish you weren't.. This is a good place to ask questions. Many knowledgeable people willing to help.

Peggy

[mpaull]

Hi Colleen, I was diagnosed Jan 2015. Other than low palettes and low hemoglobin most of my numbers are near normal. I have been told I am pre-stage 0 (zero). I suffer from fatigue from time to time and about once every three weeks I am so exhausted I just sit in chair and veg. I have gotten used to it. One day at a time. We checked iron and B12 numbers and there in the norm too. I have adjusted my diet to include more leafy greens, much fruit, no alcohol and limit the colas and drink a lot of water. The diet may not help, but I do feel better overall and may help if I get treatment down the road. God bless you and stay positive!!! Mitch L

[Nanapapa6]

I too have CCL and have constant fatigue, some days I can hardly get out of bed so I know how you feel