What have you done to maintain/improve your ge... - CLL Support
What have you done to maintain/improve your general health since being diagnosed with CLL? Please tick those that apply to you and feel free to add other examples in your comments.
HAIRBEAR_UKFounder Admin113 VotersPlease select all that apply:
I try to keep as fit as i can, I cycle to work at least 4 days a week, go circuit training once a week and i maintain a small allotment. I take green tea capsules daily - I heard they could help but even if they don't they are full of anti-oxidants. I also try my best to stay away from anyone with colds etc. I've no idea if any of this helps but i've got my fingers crossed. I feel as if I'm one of the lucky CLLers as I've been on 6 monthly blood tests now for 6 years with no obvious deterioration. The down side is i was only 52 when diagnosed.
There's not much I can do about the CLL at this point and so it seems logical that by not making it the focal point of my everyday life, I am concentrating on the things that I can control to help improve my quality of life while putting up some kind of defense against things that I can control.
I also got up to date on my dental care. I'd been ignoring a couple of teeth with rumbling infections in, (because they'd got deep fillings in and the only other treatment was to have them extracted). However, now I have appointments to have them extracted. My doctor advised me to do this before I need chemotherapy.
I have found that going on sites like these and keeping abreast of new developments in possible CLL cures helps me to keep hopeful. I've also been told by the consultant to drink more water, exercise and take Vit D3 in oil capsules every day.
Like Mollyfletcher above.
Lots more exercise
Much more careful with the diet
A few vitamin D and other vitamin pills each week, not daily, just about 3 times a week, they are cheap, cannot do any harm in moderation and might do some good.
Drink more ( water..? ) After lots of exercise I go for beer.!
A little bit of what you fancy does yer good..!!
I think I have appeared in the 'other'! Essentially I have not changed much, as I was pretty active before. So continuing to swim/gym/cycle.
I am taking folic acid (prescribed by consultant) and green tea capsules (recomended by my consultant) and trying to understand the disease (not so much treatments (too early), but what it is and the 'Watch and Wait' phase/signals it is at an end). My consultant, CLLSA material, this site, Dr Sharman bloggs and videos from a female american doctor (name escapes me at the moment) are invaluable and have helped me immensly to put it all in perspective.....here is to a long W&W period!
Diagnosis has prompted me to properly evaluate what I am doing, in particular why my office is 2 hours from home when I have kids I want to see (I have to go there 2 or 3 times a week)! So I am looking at jobs nearer home, even if it comes with a lower salary. The diagnosis prompted me do this properly, but perhaps it is something I should have done before...........
I have leg pains and muscle aches and I am a bit overweight so I decided to cut out all sugary things (hard but I am doing it). So far I have lost 7 lbs in 6 weeks. This I hope will make it easier for me to walk as I was not exercising much due to the leg pains. It was a vicious circle so now I am creating a better circle which I hope will keep me fitter. I have been on watch and wait for nearly a year now and hoping it stays that way, although I know things can change at any time.
I also decided to spend what money I have on some holidays. I might as well enjoy life whilst I am here as leave it behind!
Good luck to everyone else in this situation, may your watch and wait last for a very long time. 
I have tried most things to keep my white count down which has gone up and down over the years and was more or less stable until January when it shot up fifty points. I am in my sixth year since diagnosis and eight since it started with five monthly reviews. So far I have experienced no infections, no swellings, no sweats, in fact nothing except my count gradually creeping up but now my consultant is suggesting that I think about a new trial to bring the count (250) down. I am sixty eight (male) and always quite fit although my fittness is not what it was due to needing new hips which they are reluctant to do at my level, walking is out of the question as it requires an immense amount of energy but swimming is the best option and gardening, pruning etc is good upper body excercise.
I have consulted many people and tried many things, including red palm oil recommended by a chinese person in Jakarta, green tea in high doses(five times the norm). Unfortunately I have lived a very very stressful life and this is positively very bad for CLL, I am also overweight (6'2" 17 stone). My level seems to go down in the summer and up in the winter so lack of excercise and putting on weight makes it go up and warmer weather makes it go down as the body is no fighting to keep warm. So my formula is no alcohol (or very little-a glass of wine at Christmas), alcohol is poison, lose weight, keep fit, green tea tablets daily, keep well away from people with infections particularly children ( always ask the question of anybody visiting) colds take three days to come, three days of misery and three days to go for normal people, for us it takes a lot longer and it's always best to start strong antibiotics before it gets a grip, fortunately I have not had a cold or flu for two years or any infections for that matter, and last but not least kick stress out of the door and get a good eight hours sleep as sleep and rest are the real cure-all of many illnesses.
I was diagnosed in December 2011 and what a shock! My family were very supportive but couldn't comprehend my true feelings with CLL. I felt very much alone until I joined the local Haematolgy Support Group. The Group is an informal, friendly, patient-led group and my husband attends with me and has a much more informed understanding of the disease.
I was lucky enough to get a puppy a few weeks before I was diagnosed. Oliver is a Cocker Spaniel and does not give me time to feel depressed - we walk for miles and I appreciate everyday that I have with him. My husband and I appreciate the CLL Support Group of Health Unlocked - it has helped us enormously. I too am on "Watch and Worry".
I have changed my diet which is now mostly fruit & fibre in a bid to keep my weight down, as I.m now basically housebound due to other medical conditions ( physical/sensory ) which has put an end to my hillwalking.
Infections have not been as bad this year ( other than January ) and I am feeling ' strong '.
I am 54 and this is my 8th year on watch & wait I don't know what my blood counts are, and as long as the consultant says " they are up slightly " - and nothing more thats my good news I'll accept that until she tells me otherwise.
My hobbies are annoying the wife, with my ever increasing music collection - and fighting with DWP ...
This forum and other sites are a good support, and help especially in the ' infection ' season
when - at worse I feel as if there is no ' life force ' in me.
I do take quite a few suppliments daily about 10 or so as part of my healthcare, but as far as mentally / spiritually is concerned I am living with my CLL etc until I am told otherwise
ygtgo
I take green tea capsules, curcumin, Vitamin D3. Omega 3 and a multivitamin. I have never smoked and only drink alcohol (ie one glass of wine) very rarely. I go to the gym, go walks and try to practise Mindfulness, having attended a course on this at Maggie's Centre. When I return the to the UK in May (after 6 weeks in Oz) I'm going to start doing yoga.
Since being diagnosed in August 2012 (I'm on Watch and Wait) I have not returned to work. When I think about it, I was stressed to death, waking and looking at the clock every hour during the night. I'm sure that would be a major reason why my body defences were unable to heal me and deal with rogue cells during the night.
I still have difficulty sleeping and have to get over-the-counter help for that.
One of the GPs at my practice told me just to forget I've CLL(as if) and my very nice, kind consultant made no lifestyle suggestions to me so it really interests me that others are saying that they have had advice.
Currently, I'm reading Chris Woollams' book, 'Everything You Need to Know to Help You Beat Cancer' and I've ordered his Rainbow Diet book. I wonder if anybody has any comments regarding this?
I worry re next hospital visit in June but then try to put it out of my mind and enjoy the day.
Making sure I have more time with my children and little grandchildren cheers me up. I think family, friends and this website are highly therapeutic. It isn't good to feel alone or lonely on this 'journey'.
I have been taking 350 mg of Source Natural EGCG green tea supplement as well as 350 mg of Grifron's Maitake D-Fraction. I took these daily for 6 months, had another blood test and my numbers went down.
I was diagnosed eight years ago and am on "watch and wait". My level has remained low hence I only have yearly check ups. I am aware that many of you have much more to worry about than me and so I feel a "fraud" at times. However, I do have several other conditions which can be quite debilitating and therefore battle with tiredness all the time whether or not this is made worse by CLL I am not sure. My strategy is to do everything Iwant to do and enjoy my life and if I have to pay for it afterwards with a day or two in bed, it's worth it. I am retired so can plan my life accordingly.
I've been on watch and wait since 2006 with 4 to 6 monthly checks. Keep myself fairly fit - running about 20 miles a week Also take green tea tablets and drink lots of green tea.
I lost 125 lbs by switching to a low glycemic index diet, rich in Cruciferous vegetables and walking 3k - twice a day. Sent my absolute lymphocyte count (ALC) into a 3 year regression...
Hi everyone I have lost 10 stone and changed my diet to protein and veg with little dairy. Did go to gym but am just too fatigued now so just do yoga and swim with walks regularly. Have had diagnosis for five years and am careful to get antibiotics whenever I get infections. Still working full time and just about coping. Will keep pushing myself as long as I can and have decided to opt for no treatment . So far just have high lymphocyte count and can't seem to get it down. Do drink green tea too and take care of myself by sleeping as long as I can.
Hi
I take Green tea tablets and Vitamin D3 oh and also drink a bit more Alcohol.
I go out more and Cycle lots
Julian
Taking time out for myself, particularly when I feel tired, without feeling guilty.
Learning more about CLL via CLLSA and Health Unlocked thereby being better informed to discuss my condition/results/treatment with my Consultant, etc. Knowledge taking away some of the helpless feeling felt at first diagnosis.
I have been following Professor Richard Beliveau and Dr Denis Gingras book called foods to fight cancer, whether it will help keep me on watch and wait i don't know, but if it helps prevent any secondary cancers it has to be good, some of their recommendations I like, the red wine and the dark chocolate especially! I would be interested to hear if anyone else has tried this.
Hi I find that I need to pace myself, I can only drink one glass of wine with dinner on odd occassions but I enjoy walking and help with a walk for life group. I also have healing at my local Church (not the American type, there is no charge and you don't fall to the floor). Stress effects me very badly and I try to make my life as stress free as possible which isn't always easy.
I have turned vegan for my diet, it has been difficult and my wife is ready to kill me, but I feel better and have lost more than 55 pounds since December, which shouldn't be a bad thing. I am taking green tea everyday, as well as vitamin D. I work out every second day with weights, and walk as often as I can to my destinations. I was diagnosed at age 52 and have been stable for a year and a half. Since turning vegan I have been having sleeping well. I have taken up golfing and am trying to have as many days off as possible. Not sure if everything is having an impact but I feel better than I have in years. I am thinking of taking up yoga, which I hope will be a good thing. Perhaps I shouldn't be such a keener?
I am just starting my 8th year of watch and wait and thankfully have not required treatment so far. I only have annual hospital appointments and blood tests and I am fortunate that the rate of variation of results each year has been relatively small. I am anaemic and the consultant did (back in 2010) say treatment may be needed soon because of this but I have not reminded her about it! I am happy to avoid treatment as long as possible. I have some enlarged lymph nodes that I can detect in my neck and face, and others I cannot detect which were shown up an a CT scan.
I manage my condition by just forgetting all about it until the next appointment and blood test comes around. It probably took me the first 4 years to get to this state of apathy about it! Having said that, I do take precautions in keeping away from crowded places (good excuse for doing all supermarket shopping on-line especially during the flu season!). I don't have a weight problem and I try to eat healthily in any case (especially avoiding too much saturated fats and sugars and processed foods). I am trying to become fitter and more active - I was a carer for my mother for 8 years meaning I was quite housebound but I sadly lost her last October. I use my CLL as an excuse to myself when I consider buying something new - well why not !
I was dx at age 48. (5 3/4 years ago.). I went to a Naturopathic doctor for advice on supplements. The main supplements I take for my Cll are curcumin, green tea and Vit. D3. She also has me on a blend of 'liver health' herbs in capsule form. I walk 2 miles a day and also cut out the sugar. I feel better than I did when I was diagnosed. I eat a healthy variety of whole foods. I raise my own garden and do LOTS of canning and preserving, just because I enjoy it!
Used glutamine powder during chemo to keep mouth sores at bay.
