Same post in Macmillans CLL forum, apologies to those who use both
When I was diagnosed in Feb this year, I found these groups and read up lots of information on the condition but as I feel fit and well, I took some of the symptoms with a pinch of salt, in particular the fatigue and the susceptibility to illness due to immune deficiency. My view has changed today.
I took the opportunity to catch up on some DIY this bank holiday Monday so today I started by putting some 6ft fence panels into their pre-set concrete posts. now my garden is 200 ft so we had to carry the 8 fence panels from the one end to the other then install them (my wife was the willing helper here).
I was shocked at how much it took out of me, yes the weather is nice and it was warm but a year ago I would have handled this no problem, today I was slowing down and felt absolutely shattered when we finished, an hours work at the most! I had to rest for a couple of hours before I tackled the task of putting up 3 curtain poles and 2 shelves and now I am feeling dead on my feet.
This set me thinking about those symptoms and the need to take this information seriously even at such an early stage in my diagnosis (my WBC was only 41 at my last consultation). I realise now that I caught a cold just before Christmas, it came on really quickly and took ages to shake off, I don't normally suffer with colds but this time I had a real bout of man flu!
Time to take these leaflets and their advice more seriously now. I am considering joining a gym to get my fitness up and help lose some weight but I am now concerned that it will lead to even more fatigue and burn me out. I am due to see my consultant on the 17th so I will ask him about the exercise thing.
Take care all
Kirk
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pitbull
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Nice notion about the gym, unfortunately you won't find the energy rates any better. Keep as fit as you can without over doing it would be my advice. I'm on 3rd phase of fcr and still waiting for a sign of increased energy. Just managed my first 18 holes of golf. Took me 3 days to recover LOL. Fatigue is the most infuriating part of cll imo.
Regular exercise is the key - some 15 minutes a day to start but it must be fairly intense. No gain without pain! You only improve fitness levels by increasing gradually the intensity and workload. Fitness is specific too. Swimming, walking and cycling ideal cardiovascular activities for improving stamina.
Fatigue can also be due to your RBC being lower, ie less oxygen moving around the body, as well as the fact that you body is actively fighting the effects of the with the addition of the FCR , personally I find I am tired for the first 3-6 days and then back to normal.
My diet is now a very cleansing one; with an abundance of fruit and veg, organic foods and pulses / nuts etc and have at least 2 litres of water each day as the kidneys are working over time to remove the toxins.
Worth exercising thou, esp since the weather is so nice recently, do remember that you skin will be more photosensitive (ie burn) more now that FCR is in your system.
FCR is chemoimmunotherapy... the F is fludarabine, the C is cyclophosphamide, both chemo. The R is Rituaxan a monoclonal antibody, half human, half Chinese Hanster ovary cells...
FCR is the gokd stabdard treatment in CLL for younger, fit patients, and for some can offer a 10+ year remission.
IVIG.. is IV intravenous immunoglobulin G, it is an immune system replacement/booster...antibodies collected from the blood of up to 10,000 people worldwide...
Thank you for clearing up what FCR is. Can Rituxin be used alone for treatment of CLL or does the fludarabine and cyclophosphamide always get mixed with it?
Rituxan can be used alone, and it is, but not FDA approved... might be used with fludarabine alone, bendamustine or chlorambucil... its also being used with other new treatments...
I just started 8 rounds of rituxan combined with idelalisib... a new small molecule ...
Thanks for the advice all. I will discuss this with my consultant on the 17th. I do try abd walk for at least 30minutes a day was thinking that swimming would help.
You will also find fatigue very commonly discussed on CLL forums.
Also, you need to look at both your red blood cell AND haemoglobin levels to eliminate anaemia as a cause, with haemoglobin levels seen as the better measure of iron concentration in your blood. Frustratingly, you can have good RBC and haemoglobin levels and still experience body enervating and mind numbing fatigue. As Foolish says, regular exercise certainly can help, though I found that it took me several years to find my new limits and not overdo it post CMV and I'm sure that would be a common experience after any long or severe illness or treatment.
I have definitely found taking VitD3 ( the sunshine vitamin) in oil capsules every day has helped with the tiredness. Before taking D3 I used to look up at the stairs and see them as mountainous, now I enjoy the exercise of running up and down them - it really has made a huge difference to my energy levels. All of us CLL ers are found to have extremely low levels of Vit D3 even more than the average sun deprived Northern hemisphere population.
I feel rotton most of days since past few weeks. I am 66 w and w, stage0. My onco gives no attn to my misery. How much dose of vit D3 do you take? Can u share the make of capsules?
I suppose when it comes down to it, the best advice whether with or without CLL is pace yourself.... To be honest though, I find it hard at times to heed my own advice, being good with my hands ( Engineer and Glassblower ) and watching my family take on DIY doesn't wear well ..... An hours work can equal a few days of fatigue.
I think I'll go along with Molly and give the Vit D3 a try.
Red blood cell and haemoglobin counts being correct, I wonder if the problem could be in the heart rate: mine is frequently below 50, and doesnt want to go above 60/65, even under effort... Can somebody concurs ?
My pulse was 38 to50 and for other reasons I had to have a defibrillator that brought my pulse to 70 , and I still notice no difference in the fatigue level... am going to research vit D
Hemo was 8.6 and blood count 3.56 Started taking 325 Iron with folic acid , vit,C B6 B12 and now have a hemoglobin of 11.5 but rbc is still the same..fish 61
Have your VitD3 levels checked before supplementing and while at it, your B12 levels and B9 as well... My CLL masked my case of pernicious anemia. Now a monthly B12 shot makes a HUGE difference in my energy levels and has enabled me to come off antidepressents I was on for many years...
My blog on Fatigue and my own experience is in the archives here. I think everyone has to find their own way to cope - we are all different.
I don't subscribe to the 'no pain no gain' theory. To me, pain is a warning and it is very easy to overdo things, without realising, until it is too late; sometimes it is worth it, sometimes not. Only you can judge how much you can push yourself; for me, 'pacing' is the answer. However, I live with a lot of pain because of other problems and that is not the same for everyone.
My Vitamin D levels were checked a long while ago and I had virtually none - I take 40,000 IUs a month but I don't actually feel any benefit....could be worse without it though! As Chris says, do get levels checked before supplementing.
As I said, we are all different.
Good luck Kirk.....it is not easy and all a tough balancing act.
With. Vitamin D it is not only important to have your level checked to determine whether you need to supplement, but also to be checked regularly ( every 3 months or so) untilmyounarrive at a stable healthy level. Then checks can be less frequent, but if you live in an area where sun is lacking in the winter months you probably should discuss the best schedule for monitoring with your doctor. Imlivemin sunny Southern California and get a supposedly adequate amount of sun, but my levels were almost non existent, so don't assume that sun or diet alone means that your level is in the normal range.
I've had CLL diagnosed in 2007. Fatigue the last couple of years has gotten worse. I worked up until Nov 2012 full time. Napped on my lunch hour every day. I'm 62 and in W&W also. However due to chronic illnesses I have monthly treatments of Immunoglobulin (IVIG) that have helped with the colds, sinus infections and bronchitis. Since disability retirement I have not been a tired. Vitamin D and B12 low and take supplements which help some. I do see a therapist for depression. This is my 3rd cancer diagnosis and I also have Lynch Syndrome. Be proactive and keep your doctors informed on your condition.....
I look forward to hear what your consultant says. I have a theory that too much exercise is also bad but I have been on a low carb diet, lost 2 stones over 3 months and feel a lot better and look a lot better.I also pray every day, this combination seems to work wonders.
Hmmm in response, my consultant doesn't seem too concerned with the fatigue and almost dismisses it when I mention it.
My last consultation in Jan shows my bloods have remained stable for the last 11 months and therefore while I have CLL, it is very early stages and not progressing. Get on with life is the prognosis at this time and he doesn't want to see me for 9 months. I imagine if they are still stable then I will go onto an annual check.
I am really pleased with that result as it means I can carry on with life and plan for the future knowing I am stable and long may I remain so. Fatigue wise, I try and get exercise daily by walking and take it slower when doing DIY.
Well since that post, nothing really changes, I have learnt to pace myself and get rest really. I don't mention it to my consultant as he always dismisses it.
I have had stable results for the last 4 years and remain on an annual consultation so I just get on with life.
Thanks Kirk. I pray and hope that my numbers remain stable. I am only one yr after dx.
Your GP does not advise u on any diet/ supplements which can improve or the numbers? My GP and ONCO give no time/importance to my qol. Last time my GP said" EAT WHAT U WANT, IT HAS NO CONNECTION TO CLL."
We are all different,that's for sure! That said,two years ago,at official diagnosis,I couldn't walk around the block or complete a full sentence without gasping for breath. Two years later,I am jogging 2-3 miles daily or walking them,5x a week. I was so fatigued at diagnosis,I really couldn't focus. For me it is the consistency and the type of exercise that seems to have been the catalyst. A good 30 minute jog or a 40 minute walk seems to just invigorate me for about ten hours. More important,was the switching to a very wholesome diet. Probably that,more than anything,is the true catalyst to lessening fatigue. I eat a macrobiotic diet. I stopped eating a lot of foods that I truly believe were inflammatory in nature. At diagnosis I was 192 lbs(fluctuated from 187 -199)....today about 145lbs. Using the yet unproven theory that if you get rid of a lot of the typical age related maladies that afflict us---high blood pressure,diverticulosis,acid reflux,allergies,poor liver functions,high cholesterol and repeated nasal congestion,earaches and other stuff---it stands to reason that you just feel more vital. I got rid of all of those annoying afflictions. It does not happen overnight,but it can happen within a few months. The bottom line ,at age 64---I have more energy than ever. I think that getting enough vitamins D,A,C,K,B-12 and folate in your diet, greatly influences your level of fatigue. And doing some kind of consistent aerobic exercise just makes your heart stronger and oxygenates the blood.
This input is really useful. I anyway do yoga for past 10years. Pranayam essentially gets more oxygen in the body.
As immediate change, I will include walking and increase pranayama. This shud improve my vitality and general well being.
On diet, I take a purely vegetarian diet since birth as per my religion. How much impact occassional icecream or fried snack can have on our wellbeing?
Prior to beginning Ibrutnib my fatigue level had become bad. I would find myself falling asleep as soon as I set down. Would fall asleep before a movie even started and would have bouts of brain fog. I had been running 5k races to help stay in shape. Once I started on Ibrutnib my energy level improved and I was determined to run again. I would sign up for a race a month to help motivate and try to train around three days a week. I think this running, determination and medication has helped me keep fatigue somewhat under control. I will not set any course records but this helps me stay motivated. I have high risk factors and plan to be as strong as possible before beginning a clinical trial in June.
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