Living well with CLL

[Flipper5610]

I was diagnosed with CLL in 2014. I had been sent to the local cancer clinic upon diagnosis. I was followed up there for a few months and then discharged from their care as my CLL has been very stable. MY WBC count is rising ever so slowly. Last count was 39.2 . I have no other symptoms other than feeling less energetic. Should i be worried? OR when should i get worried??

[Newcastle1962]

Hi flipper. I am like you. Diagnosed last year. Wbc approx 20 and slowly rising. Im taking the attitude i cant change what is going to happen to me so live now and try to live in the moment. Im finding out as much as i can from this site as knowledge is power. For the time being i am trying to have a positive mental attitude and focus upon living my life rather than being miserable as it may be years before treatment is needed. Im taking the attitude that this disease can be treated and we are fortunate that its not acute. You are not alone. I cannot comment on anything else as im like you in the very early stages. Keep strong.

[Flipper5610 in reply to Newcastle1962]

Thanks for the note. I have always been a very happy-go- lucky type person so its not hard for me to keep strong in that sense BUT i was a nurse for over 30 years so i have seen a lot of "things" including patients with leukemia with unfavourable outcomes.SO i do worry a bit . BUT i am still very encouraged that I do not require any treatment at this point and that the doctors feel i have many more years to look forward to. Let's keep in touch.

[Newcastle1962 in reply to Flipper5610]

Thats good to hear I will do. I have bloods taken at end of month then have the results first week in June. I will let you know how i get on.

[ygtgo in reply to Flipper5610]

Hi Flipper

" my CLL has been very stable - My WBC count is rising ever so slowly " ... that's what we like to hear.

Personally, I've been lucky in that that has been my diagnosis since 2006 ... I'm still on Watch & Wait.

I'll quote Newdawn ' However, your immune system is still compromised '

That is the the main thing ... It's up to me and my GP to deal with any symptoms of me having a compromised immune system ... it's my Hospital Consultant who does the Watching and Waiting.

Worrying a bit is the reason that we all found ourselves drawn to this site, so you are with friends here who know the score, and if anything is bothering you, just ask, you won't be ignored.

... you've been a nurse for over 30 years eh ? The next time I have a few twinges, I'll know where to come ... I'll keep you busy mind !

ygtgo

[baq724 in reply to Newcastle1962]

Diagnosed in October 2016. Old blood counts show probably had it for 4 years prior. After my initial worry, I feel so much better about life. I am back to the old me. I just have a "quiet buddy" who is tagging along for awhile. Luckily he is quiet and I have no symptoms. My WBC was 23 when diagnosed and has actually gone down in each of my tests since then. Went to MDA for all the fancy tests and saw a specialist. I exercise and enjoy life with my children. Doctors feel it will be stable for quite some time. Good luck to you and come here for reassurance if you need it. It's been a Godsend for me!

[Newdawn Administrator]

My advice would be resist the worry simply because you feel it's expected. Your WBC is rising very slowly, you sound asymptomatic and in general good health. CLL has a way of telling us when it's becoming problematic and the figures are not the main indicators. As long as you're being monitored and your ALC doesn't suddenly double in 2 months (over 30), your RBC/haemoglobin and platelets stay within reasonable levels and your neutrophils are holding up, there's no reason to allow it to dictate your thoughts or further deplete your energies.

However, your immune system is still compromised so take the necessary precautions, have the recommended immunisations, eat and exercise as well as you can and watch for any changes, pains or swellings that could signal advancing disease.

Sending best wishes and hope your CLL meanders along very boringly for a very long time!

Newdawn

[UK-Sparky]

Sound advice Newdawn, I guess being a nurse with decades of Knowhow may be a cross to bear as well as a blessing! You do sound stable and as my consultants keeps telling me it is not down to one magic number but often a cluster of indicators that will trigger treatment. Keep well, keep positive Flipper

Best wishes

UK Marc

[Hazel33]

Good to know others in the same position and we are not alone which I always feel as no-one wants to hear about it. It seems to be a taboo topic. After 6 years diagnosed my wbc is 50 so that is good. So the best thing is to fill your life with what makes you happy, concentrate on other things/people and hopefully you will outlive the condition😇 I love having this group😊

[Quarry]

If WBC rising 'ever so slowly'...you might not need to worry for many (even 10s of) years. Enjoy life!

[sun_flower]

Hi flipper,yes I agree with everyone above, really was a worrier at Ist infact previous blood tests show have had CLL since 2006 my A L C is up and down but mostly indolent l have blood tests every six months,get all the reccomended vaccinations and be mindful of hygeine,l must admit I get very tired but am getting older 69 tomorrow so l suppose it's to be expected,take care and by the way this is a fantastic forum no question is ignored and l feel l have made lot's of virtual friend's ,maggie

[mombasa333]

THANK YOU. THANK YOU, THANK YOU for this post.

Short version here, I'm actually good with CLL, just tired all the time. In my church we have had lost a couple of church family members and I have lost family members to CLL.

I changed my diet big time and dropped from stage 2 to 0. My attitude is, I'm the hunter, I'm the killer. So obviously I'm aggressively pro active.

Since then a couple of more individuals have been diagnosed with CLL, I reached out and was body slammed and put into my place quickly.

Some people prefer to play the victim, refusing to take responsibility and make changes at least trying to make an attempt to contribute to their own well being. Preferring to wallow in self pity and bringing other people down with them with their constant complaints. Rock on people!!!

Fantastic post.

[ezabella in reply to mombasa333]

Hi Mombass

Could you please give me some information in regard to your new diet, what do you eat and what food to avoid? as I am very worried because I got CLL with inflirtation in liver, causing me mild pain and my liver function test showing some ubnormality in two enzymes, am diagnosed Feb 2016 I got a swollen node on my neck.

Thank you

Ezabella

[mombasa333 in reply to ezabella]

Ezabella , exactly the same with me, including spleen. It hurt for me to turn a corner in my own home as my liver was that inflamed!!!

Check it out, real simple. Leviticus Chapter 11. There is a book "What the Bible says about Healthy Living. It's by Rex Russell. MD. That breaks it all down. Nowhere in Scripture does it say Animal Crackers or Rice-A-Roni those where my two loves.

Another one is " The cancer killers "

By Dr. Charles Majors, Dr. Ben Lerner and Sayer Ji.

You want to read some irony. I brought this up to some fellow church members who have CLL and I got skewered big time they wanted to know the logic.

I figured the cancer community with all the scientific professionals with their computers and labs have enough logic to go around the world multiple times, so I'm going by faith.

[MariLiz]

My husband is in the same position as you, and been discharged from the hospital back to the care of the GP. We have felt a bit concerned about this, but his only symptoms are increased tiredness. I feel reassured reading some of the replies to your post. Wishing you well. MariLiz

[EmilyLondon]

Thanks for this. You say you have no symptoms apart from feeling less energetic. I'm interested in what other patients' experience has been of energy levels and fatigue at very early stages of the disease. My consultant is of the view that my MBL/CLL is not playing any part in the fatigue levels I am experiencing, since the disease is at such an early stage. WBC level only about 12 and MBL only about 3 of that. What do others think? I recognise of course that being a busy person in my early 50s with what was a demanding job (I am signed off currently with fatigue and likely to leave), caring responsibilities, the menopause and repeated viral infections, I am likely to be tired. But I have been working for some years now on being well - drink very little, never smoked, get plenty of sleep, pace myself, walk about, have a nice partner and teenage son, take vitamins and eat fresh foods.

[Newcastle1962 in reply to EmilyLondon]

Hi i am in same position as you. Very early stages. Age 55, dont smoke or drink, eat well, menapause, thyroid, work, 3 children i never stop. I feel fatigue which is different from being tired. I have started to exercise more. I hula hoop and kids have a trampoline in garden. I also take vitamins green tea and vit d it seems to work. I do feel a lot better but the fatigue is always hanging around i guess i have learnt to live with it.

[EmilyLondon in reply to Newcastle1962]

Hi - I don't have any problems with my thyroid. Wow, three children and you can hula hoop!

[Newcastle1962 in reply to EmilyLondon]

I decided to hit this head on. I hula hoop whilst watching tv to get my lymphatic system going. I trampoline in garden also as and when. Its good overall exercise. I work on 3rd floor and can now run up and down. Im one of the few in my office of healthy indicviduals that can do this without panting. My work involves having to do this up to 10 times a day so i thought i may as well use it to keep fit.it is a double edged sword as the more fatigued u are the less you want to do. This way its not hard work and it fits around family life.

[mgh348]

I think it's frustrating when doctors say fatigue is not due to CLL. We all know that it's not true. Cytokines cause flu-like fatigue and other symptoms. Debilitating fatigue can be an indication to treat.

[Hazel33]

I find the worst symptom for me, 6 years diagnosed and low wbc of 50, is the fatigue. I am sure it's CLL related as my friends seem so much more energetic! However it's a symptom which is always ignored. I'm grateful that is all I have