Fingers crossed!

Hi all .... just thought I would add my tuppenceworth and share my experience of CLL treatment. Diagnosed in Oct 2009 at age 47 with 'Watch & Wait' (lymphocyte count 16) ..... however by Jan 2011 my lymphocyte count was around 130 so was offered treatment on a Clinical Trial at Southampton General Hospital and I was randomly selected for the 'Gold Star' FCR which I started in March 2011 - and finished in July 2011. I had to move to an apartment in Southampton from my home in Guernsey - on my own - and I was very fortunate/lucky to never suffer ANY side effects from the treatment - apart from two mornings where I felt a little sick for a couple of hours. I have always been a fit chap and after the chemo treatments I used to go out and about - as I hated being on my own with no one to talk to! Yes - I was aware of infection risks, but I always felt as I always did before!

THough it sounds odd, I have always had a good immune system and hardly ever had colds or was rarely ill .... just as well as my job is an airline pilot.

It took me a year to get my Medical back and I am enjoying a normal life and in good health and good remission ...... though my lymphocyte count a few weeks ago was just above the upper normal level at 4.7 .......... so I hope that this rise will either be a 'blip' or a long slow increase!

Lessons learned ..... be as fit as possible for your age (within reason!) ..... don't get stressed up ..... eat healthily ... and take everything in your stride in a calm manner.

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  • Thanks so much for sharing your story, Timobeanie. It was great to hear how well you've done.

    Paula

  • You are welcome Paula. Everyone is different and you have had a long 'watch and wait' ....... please keep me posted! Tim

  • Good readin Tim,

    Out of curiosity, what changes have you made to your diet? Always interested to learn from others experiences.

    Rob

  • Hi Rob

    Take number vitamins every day including 1 - 2 grams of Vitamin C and a high strength multi vitamin + extra selenium/zinc/calcium (all from Holland & Barrett) ....... cut right down on potatoes and bread (only eat gluten free bread the few times I do eat it - and it tastes fine) ...... make myself a fresh fruit smoothie ) mostly out of berry fruits with a sprinkle of omega mixed seeds and flaxseed for breakfast (all bought from H&B) ...... I stopped drinking milk and eating cheese/dairy which was quite hard but now I am used to it and I drink green tea instead and use Hazlenut or Almond milk instead on muesli (one benefit was my cholesterol went down from 6.0 to 4.0 !) ...... and I am NOT an H&B employee!!

    I have read in recent months that Diet Sodas (Coke etc) have been linked to Leukaemias - the aspartame is the culprit apparently ........ so I have cut down on those - as I used to drink Diet Coke.

    Also I go to the gym 2 - 3 times a week ....... important to do 1 or 2 aerobic machines with the workout .... but I don't go mad! Alternatively cycling or jogging outside just as good.

    I hope this helps, but I am not saying this 'cures' or anything like that ...!!!!!

    Bye for now!

  • I second that,also first discovered CLL since 2009.

  • Hi there . this is my reply to Rob:-

    Take number vitamins every day including 1 - 2 grams of Vitamin C and a high strength multi vitamin + extra selenium/zinc/calcium (all from Holland & Barrett) ....... cut right down on potatoes and bread (only eat gluten free bread the few times I do eat it - and it tastes fine) ...... make myself a fresh fruit smoothie ) mostly out of berry fruits with a sprinkle of omega mixed seeds and flaxseed for breakfast (all bought from H&B) ...... I stopped drinking milk and eating cheese/dairy which was quite hard but now I am used to it and I drink green tea instead and use Hazlenut or Almond milk instead on muesli (one benefit was my cholesterol went down from 6.0 to 4.0 !) ...... and I am NOT an H&B employee!!

    I have read in recent months that Diet Sodas (Coke etc) have been linked to Leukaemias - the aspartame is the culprit apparently ........ so I have cut down on those - as I used to drink Diet Coke.

    Also I go to the gym 2 - 3 times a week ....... important to do 1 or 2 aerobic machines with the workout .... but I don't go mad! Alternatively cycling or jogging outside just as good.

    I hope this helps, but I am not saying this 'cures' or anything like that ...!!!!!

    Bye for now!

  • Did you loose your medical just during chemo? I have a PPL IR (US and UK) but havent bothered trying to renew my medical since very low platelets and low hemaglobin will result in a fail. It would be wasted money to even bother going for the medical. So for now, while on w&w! I keep "in touch" using PMDG 747-400 sim software and I am hopeing that once i have treatment, levels will return to normal. Not sure how painful the medical process will be then with the CAA to recover my license.

    Mike

  • Hi Mike

    Yes - my CLass 1 medical was suspended ..... it's a temporary suspension NOT a permanent suspension because a number of pilots have had this. I had a small battle getting it back because not many are willing to put their signatures on paper to get you back flying ... but eventually they do! They want to see your white cell count get to normal range. I got my two crew medical back 11 months after chemo and my sincle crew medical back another 9 months later!

    Therefore I would think it would take up to 12 -18 months or so after you finish treatment ... but that's a rough guess!

    Hold in there .... you will get it back!

  • Fingers crossed for you, Im so jealous you never had chemo sickness. Im much the same age as you and fit. Im crawling chemo week, mostly to the loo the nausia is soooo bad. However your a pilot so you should have a strong stomach. I get sick if i read a text msg in the car! Ive just got a new ford with sync to help!

  • I'm sorry you get sick ... 99% of patients do I was told .....I was just very lucky and one of only 2 or 3 to have had this happen to them I believe! I was given two types of sickness tablets during my chemo and they must have been very good. All I can say is that the end result of FCR is worth it - with very good remission periods for most patients.

    Hang in there Mr Bear!

    ps ... my tummy is strong - especially after the recent bad turbulent weather Ive had to fly in!

  • Fabulous and positive story congrats on your obtaining medical back and getting back to work

    I hope my experience that is I'm due to see consultant in a week or so for FCR will be as positive also

    Roger out

  • Cammie ...... be strong ... take everything in your stride and don't get stressed if you can help it!

    One thing I did not have was a partner with me to support me through everything - I was on my own ... so if you have someone then that will help SO much.

    Best of luck!

  • H Timobeanie - appreciate you sharing your CLL journey thus far. Really good to hear how well you are doing - more importantly how positive you are.

    I completed FCR in January of this year. I am having my assessment in a couple of weeks - hoping and praying for a good remission.

    Thank you for all your tips - completely agree.

    Take care

  • Hi there ..... yes .. don't get stressed and take everything in your stride. I would think Yoga/Meditation would help some people and I would love to start that myself (never had thought of that before as a 'bit of a lad' type of guy!)

    Good luck!

  • Great to hear your so much better, I also am on W&W only diagnosed last summer, it's the unknown that lies ahead that sits in my head at night and keeps me awake.

    Stories like yours Timobeanie reassure me that there will be time to get to my bus pass and still be able to use it more to the point :) .

    So hope you remain well and happy !!!!

  • Hi Pixie! I am happy that it reassures you from my story!

    YEs the unknown is not nice ... but they know what they are doing!

    I don't know how fit you are Miss Pixie, but exercise is beneficial I am convinced ... even gentle exercise ..... aerobic things rather than lifting weights!

    Thank you for your good wishes and I hope you stay on W&W for a long time!

    Tim

  • lol I'm a very good girl where exercise is concerned ,I have a 2 yr old black lab who ensures we walk for at lease 2 hours a day, so no chance of becoming a couch potatoe with Hamish around.

    Thanks so much for yr good wishes

    Keep well and happy

    Have a lovely weekend it looks like great weather :)))

  • Thank you ..... I've had a fairly stress free weekend so far but early shift tomorrow + lose an hour sleep tonight so the matchsticks will be propping open my eyelids tomorrow!

    Good for Hamish!

    Take care :)

  • ps ........... Some info that you may find useful:-

    I have read that if one stops consuming sugar (in any form) then cancers/tumours are 'starved' of energy and have been known to shrink - with some completely disappearing.

    Lastly, I also read recently in a journal somewhere that the Aspartame in Diet drinks (Diet Coke/Pepsi/Fanta etc) has been linked to Leukaemia ..............

    that's a bit of a weak spot for me as I don't drink full fat sodas so drink the diet versions ... but now have cut right down!

  • hi timobeanie, I have SLL and completed my FCR in February, I am now 43, a firefighter and have always been a fit bloke. I did suffer quite a bit with side effects for 1 week in 4, however for the other 3 weeks I tried to live life as normal as possible, especially regarding exercise. I continued running and mountain biking throughout the 6 regimens and found it so important, both physically and mentally. It became more and more difficult but I found it so beneficial and I do believe any form of gentle exercise must help. As regards stress and diet I do agree but must add I do find a cheeky pint every so often also does no harm.

    Best wishes to you, and if your flying me to Portugal in July give me a shout on the tannoy!

    Good luck in the future Mark

  • Hi Mark

    Sorry I didn't reply earlier but been working!

    Seems you had a 'lucky escape' too! ....... Yes your story seems to back mine up and although one must be careful with any type of claim or advice concerning a 'cancer', I am in no doubt that exercise is beneficial in helping keep the body able to fight back.

    Some info that you may find useful:-

    I have read that if one stops consuming sugar (in any form) then cancers/tumours are 'starved' of energy and have been known to shrink - with some completely disappearing.

    Lastly, I also read recently in a journal somewhere that the Aspartame in Diet drinks (Diet Coke/Pepsi/Fanta etc) has been linked to Leukaemia ..............

    that's a bit of a weak spot for me as I don't drink full fat sodas so drink the diet versions ... but now have cut right down!

    It wont be me flying you to Portugal - I stopped those routes a few years ago!

    Now I fly closer to home!

    All the best

    Tim

  • I also believe that my aerobic exercise has kept things in check. Note that many CLL people have a low internal body temperature, and cancer cells can die from hyperthermia when normal cells don't. Chaya has a great article on this: updates.clltopics.org/748-t...

    Admin: correction hypothermia (below normal temperature) corrected to hyperthermia (above normal temperature). Interesting hypothesis...

  • Many thanks for this ... I will have a read later.

    I have a slightly higher internal body temperature ........

  • Some info that you may find useful:-

    I have read that if one stops consuming sugar (in any form) then cancers/tumours are 'starved' of energy and have been known to shrink - with some completely disappearing.

    Lastly, I also read recently in a journal somewhere that the Aspartame in Diet drinks (Diet Coke/Pepsi/Fanta etc) has been linked to Leukaemia ..............

    that's a bit of a weak spot for me as I don't drink full fat sodas so drink the diet versions ... but now have cut right down!

  • That is another reason why I believe I have been very lucky. I have stopped all sugar and bread and decreased protein intake. Another colleague of mine has been doing some interesting studies in his lab: they inject mice with cancer. All the mice get it. Then they put the mice into two main categories: mice fed with standard laboratory mice kibble with 18% protein., and mice fed with rice millet and fresh green leafy vegetables like kale. The mice fed on kibble all die. Mice fed with rice millet and green leafy vegetables are then put into two categories: those fed 18% protein and those fed with 5% protein. Those fed with 18% protein die at a large rate within 100 days (90%). Those fed with 5% protein are still alive after 100 days (between 33%-50%). Additionally, if those mice are fed less (a caloric intake of only 80%), there is a further increase in overall survival, though those numbers are less certain. Interesting. There is a theoretical explanation of this by a friend of mine D. Eichler, J. theor. Biol. (2001) 210, 319}325.

  • Yes interesting stuff thank you ..... though I'm not sure if your friend's book would be a little too academic for me .....! ;)

  • Many thanks: you are the only person not to report dire side-effects: and to be able to lead a normal life, including your job Good that you did not go off course in either sense,

  • No ... I know I was very lucky John ........... but I always had a positive mind and only regarded all of that time as a 'blip' in a sense ............!!

    I just had a message from a firemen called Sparkio who had only side effects for only 1 week of his FCR ..... and he was a fit chap ... so I guess being reasonably fit does help to a degree.

    Regards Tim

  • Hi Tim,

    It's really good to hear that you had such a positive experience with your treatment and beyond.

    Diagnosed at 51 in 2011, I'm now four cycles in to six cycles of FCR, in CR but not yet MRD- so cracking on with the next two when my neuts rise back up to optimum level.

    Went in for chemo yesterday but got sent home with low neuts of 0.6. Despite being pretty fit, rowing 5k 4-5 times a week, walking every day and cycling regularly, I've had a pretty rough ride with chemo - mainly debilitating nausea during and a few days after, a serious drug reaction to the allopurinol in the first round, and also hovering around the lower ends of acceptable neutropenia for much of the 5 months to date.

    I guess it's a bit of a lottery really, but I think staying as fit as possible before, during and after treatment is important to maintain one's strength, and sense of well-being, even if it doesn't necessarily guarantee a smooth ride through chemo for everyone!

    I work as a University Lecturer, and am wondering how I will manage the return to work if my neuts stay very low for a prolonged period following chemo. Unis are inevitably hotbeds of viral infections, and sharing centrally heated rooms with up to a hundred young people for hours several times a week can take its toll on the most robust of immune systems, so I'm hoping my counts bounce back quickly after chemo... it's really interesting to hear people talk about their return to work following chemo, as I think this is an area of concern for many people, especially as younger people are getting diagnosed, and retirement ages creep inexorably upwards. Might be useful for us to start a thread at some point and get it pinned...

    Anyway, lovely to hear from you and to share in your positive experience :-)

    Julia

  • Hi Julia

    Many thanks for your reply.

    When I was going for my treatments, I met a number of patients who had similar side effects to you and had to have chemo delayed due low neuts .......... also Allopurinol can make people react - I had to stop it early on as it was giving me rashes.

    Yes it is a lottery - I was just very lucky to have had no side effects.

    Getting back to work took some time as the CAA are ridiculously cautious - and I was in the gym getting my fitness instructors certificate at the time and was very frustrating as I felt so good!! I got it back eventually ...... I hope I can get it back again if I have to have treatment in the future . though my Specialist in Southampton told me that next time he would treat me with one of these new wonder drugs being trialled ..... something like 'pop a pill everyday to keep the lymphocytes down' type of thing ...! ;)

    Anyway - keep battling on and you will come out the other side ready to take on the world again.

    Bye for now

    Tim

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