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[fayeander]

I was diagnosed with CLL in May 2015. Continue to be extremely tired after completing six months of chemo in December 2015. Are there any other CLL followers bothered with this extreme tiredness?  

[pumpkin48]

Hello Fayeander and a warm welcome.I am sorry I have no advice about being tired after treatment as I have been on w and w for a year ,stage 1.I am happy you found this community as you will get much informed advice and support here.How did you find out you had CLL and what stage were you when diagnosed? Well wishes,Pumpkin

[fayeander in reply to pumpkin48]

Hello Pumpkin, Thank you for your concerns and your message. In March and April (2015) I started getting extremely tired, to the point of exhaustion. Dragging myself to work and back home, then falling into bed. I would have to hold on to the walls or furniture to walk around in the house, and the same thing at work. I went to my primary doctor several times, each time doing lab work. I received a phone call about  my labs in early April and I got very angry as they told me that my labs looked okay, B12 still a little low, even after taking injections of B12 once a month for a year, my Vit D was a little low. My Thyroid was good, I also take Synthroid for Hypothyroidism.  I knew all of these could make me tired if they were low. In the end of the conversation they told me my WBC was low, but that it had been low since May 2014. I had major surgery in July 2014. I told this nurse that I wanted to see my doctor that day, but they tried to put me off. I told them what time I would be there. I have been going to this doctor for over 25 years. I went, the doctor and I discussed the WBC, and why I was not told it was low and had been low since 2014.  Without further delay, this doctor whom I have total respect for as a friend and a doctor, referred me to a Hematologist.

I was the primary caregiver for my Mother, she had CLL for eight years before her death in 2004. I knew what was going on with my body, I knew what I had. I had all the symptoms! I keep all of my medical records, family medical history, my prescriptions, my surgeries, etc., in a file in my computer. My granddaughter helps me update this every time something changes. 

When I went to the Hematologist/Oncologist for the first visit,  this was also my late husband's doctor, he circled my Mother's medical history in red ink on the medical history info sheet I gave him. He ask me one question and that was, "Faye, you already know what you have, don't you?" And I told him that I was almost sure, but needed to hear his diagnosis. He told me that I had CLL, but fortunately, unlike with my Mother, we caught mine at an early stage. He said my symptoms were far more advanced than what my blood work was. 

I also have been diagnosed with memory loss, an illness that seems to be difficult to find a good doctor. I also have tremors, mostly in my hands and head...

I took six months of chemo and so far, my labs have been good. I go back for check-up with Oncologist on May 19.

For almost two months I suffered from exhaustion, to the point that I would begin to cry because I was so tired. I never once thought I had CLL until the WBC elevation was mentioned. That was the last thing on my mind! 

I hope I didn't go to extreme with trying to answer your simple question about my CLL. I have come to realize that when you have cancer or any illness, you have very few people to discuss your illness with. No one wants to hear how you really feel. Sometimes it helps to talk abut it! 

Thank you for listening!

Faye  

[CLLCalifornia-USA in reply to fayeander]

Faeander,

Sending you a big hug. You've been through a lot. Now that chemo is over, I hope you will be able to find the cause for extreme exhaustion. We're here when you need to vent.

Best of luck,

Sally

[fayeander in reply to CLLCalifornia-USA]

Thank you Sally! I caught the hug! Everyone seems to be so nice and such a spirited welcoming committee~~I appreciate everyone's opinions and first hand experience information. All information helps me and I look forward to hearing from more CLL Supporters. 

Thank you,

Faye

[wroxham-gb]

Hi Fayeander and welcome to our community. 

What does your specialist say Fayeander,I would have thought you would have started to feel a little bit better by now. Can you say what chemo you had. Fatigue and tiredness is a common symptom of CLL and we all have different ways of coping. Another thing which gets mentioned a lot is vit. D and B12, has yours been checked? If not it's a good idea. I still get fatigue and i find if I rest during the day I can carry on.

If you type in tiredness andfatigue in the search CLL support Assoc. Box (top right hand side) it will bring up lot of posts by our community for you to read.  Another good read is "coping strategies for living with CLL" by Paula, again found on the right had side under pinned posts.

I hope you soon start to feel better.

My best wishes.

Sue

[Peggy4]

Hi Fayeander. A very warm welcome to our group. Like yourself I was diagnosed with CLL in May 2015. Fortunately, I am still W&W so cannot give you much advice re treatment. However, if you want a place to 'be yourself' then this is it. Always someone to listen and sometimes that's all we need.

Peggy

[fayeander]

Hi Peggy, Gosh! Your sunshine smiley face reflects your message/personality. Awesome!

Your message is the best advice, it brings sunshine to my office! 

You hang in there! I feel better, if I could just get some of my energy back. 

Thank you,

Faye

[PE1234]

Hi Faye and a big welcome from me too .

I am on Ibrutinib and I must say it isn't without a few side effects but nothing major .

I too get some fatigue but mine seems to come and go .

I am not a good sleeper so I put a lot down to that .

Before I was diagnosed I used to take Black Strap Mollases when I got a tired spell and it would work very quickly for me .Now I take Ibrutinib I try rightly or wrongly not to take much else .

I do find eating watercress daily and beetroot seems to keep me going .I also nibble dried apricots at night .Wether this does any good or not I don't know but it seems to work for me .

Try it it may make you feel better too .Wont do you any harm anyway .

I hope you will soon feel better .Its dreadful to feel so tired and eaxausted all the time .

Take care and welcome once again .

Brenda 🍆🌞🌞🌞🌞

[PE1234]

Should have said exhausted .Some times my fingers want to do the walking in stead of my feet 👯👯

[fayeander in reply to PE1234]

Hi Brenda,

I know how it is to try to type and my mind doesn't cooperate with m y fingers. 

Thank you for all the suggestions of what to eat to try to build up my energy. That's great because I am a nibbler! I eat constantly!

Thanks,

Faye

[magnolia_cat]

I experience fatigue most of the time and have not had any treatment yet 😴

[fieldmeadow]

Hi Raye,

I completed 6 months of chemo about 2 years ago. Initially felt good. Still feel good apart from fatigue. Turns out I have an underactive thyroid. This may just be a result of getting older as I wouldn't have thought it is a result of my FCR treatment - but may be worth checking if there are no other obvious causes for your post-chemo fatigue.

[fieldmeadow in reply to fieldmeadow]

Sorry, got your name wrong in the above post.

[Loves2walk]

Welcome Faye and also sorry for the need to find the site.

I am a newbie as well (my husband was diagnosed two months ago). He is W&W and very lucky to be symptom free. Im afraid I can't offer any insight to your fatigue BUT I can second everyone's opinion so far that you've found the right place to come for answers to your questions!

Take care and I look forward to getting to know you!

[fayeander in reply to Loves2walk]

Hello Loves2walk, 

Thank you for your kind words of encouragement. So sorry to hear that your husband was diagnosed, but great that he is symptom free. 

I think I would feel much better if I could just get some energy back, and keep it. I am working today, but just feel that I have no energy to even pick my arms and legs up. 

It's great to have someone to discuss/complain/vent to. I rarely talk about my CLL to my coworkers, friends, or family, unless they ask first. I get this feeling they don't want to hear about illnesses from anyone.  This is just probably my feelings and not really the way they feel. 

My granddaughters are the one's with real caregivers hearts, ages 13 and 17 years old. They always ask me about how I'm feeling and if they can do anything for me. Real sweethearts!

Thank you again and I pray that your husband continues to be symptom free.

Faye