I was thinking: cml is a hard disease and doctors only tell us to take daily medication and to don't miss appointments. I think this is important but is this enough? what do you do to help your body - and mind - to fight cml?
You are here
What do you do to help your body to fight CML?
CML is due to a gene abnormality caused when two chromosomes swap sections with each other. When this happens between chromosome 9 and 22,a new gene (BCR-ABL)is formed- this bit of rogue DNA codes for an unregulated protein called tyrosine kinase that allows white blood cells to grow out of control. TKIs block specifically this abnormal protein (unlike other forms of chemotherapy that target both healthy and cancerous cells) and this is why they are so effective in the treatment of CML.
I think doctors are right when they tell us to keep taking our medication - it is the most important thing and the only one that will keep us alive.
Anything else we do to maintain and improve our general health is a good thing and it may make us feel better but I don't think it makes any difference to the disease.
I'm very skeptical about food supplements and alternative medicine: I eat a balanced diet, I don't smoke and I don't drink alcohol(I never had so it's not a change of lifestyle due to the CML). I am quite slim, I take regular exercise and essentially I just get on with my life. I am a scientist so I understand what's going on in my body, I know how the PCR works and what it means but I never ask myself why I got CML and what could have caused it (what's the point of it?). I'm happy that an effective treatment is available and I take every day as it comes.
By the way I was diagnosed just over a year ago - my response has been sub-optimal (in fact, according to the ElNet guidelines I failed the 3,6 and 12 months targets). I'm on my 3rd TKI(Bosutinib) and the PCR value is coming down (last one was 2.18%- not IS) but still a long way from MMR. I don't know what the future holds but I feel well, the side effects are manageable and life is good!
Best wishes
Luisa
Hi Luisa!!
your story is similar to mine: i never drink, never smoke, i'm slim, always had a good general health and i know that cml is just an - terrible- accident.
I do believe that take ours pills is the most important part of the therapy, but i do also think that our body can help us too. If some food can make tkis go slower, maybe we can do some things to help tki - like preserve our liver, etc. I'm not a scientist (i'm an attorney) and i'm a skeptical (sometimes pessimist too) person too but i feel good "helping" myself to overcome this disease and maybe that's the reason i don't' have any significant side effect. TKI's are not an exact science: as i told in another topic, i have a friend who was diagnosed in accelerated phase 12 years ago and he is pcru for 5 years. he's fat, sedentary and junkie food addict!
Congrats for the PCR result. is always nice to see it go down.
All the best!
Lucas
Dear Lucas,
Thank you, I’m doing well. I was diagnosed 7 month ago, on the other site of the world where you live, in Singapore. As you and Luisa, I’m don’t smoke and have a quite healthy life, love homemade food etc. But you never know what to expect in life. For the news, after only 3 month being on Tasigna I got under 0,1% PCR and have been in the last test. I will have another one done next week. My last bone marrow showed 0 cells so I hope I will not need to make one more again. But I’m still worried from time to time, I’m 38 have 2 small children and the name of CML (leukaemia) is still scary for me.
Yes, I also wonder if there is something natural to help fighting the body, even if I know that the TKI’s are without a doubt the best. Long-term medication has an impact on the liver and I have quite bad acid reflux since I take my TKI’s, I had to change the hour of taking them. So I try some vitamins in fresh fruits and I guess I should start to do more sports. I will not stop my TKI’s but like you, I would like my body to get some help to deal with the medication that I will take a long time, if not my entire life.
Hi Ece!
I'm glad you're doing great on Tasigna. with a PCR under 0,1% you're in a great place and probably CML will not be a great concern in the future for you. :)
TKI therapy is our savior and we must be adherent to it. I read in another forum about some people who stopped their therapy or reduced doses by their own. i don't think this is a wise thing.
I'm seeing a nutritionist specialized in oncology and he says that food or supplements will not cure us but it can help reducing the side effects and helping our organs to be more efficients. So, it's not voodoo or something like that. I just want to have a good body and a good general health to fight inffections, etc., and even, if i don't have any other option, to help me in a BMT.
best regards from the other side of the world,
Lucas
Frankly if my specialist told me that standing on my head with my finger up my backside would help then I'd do it! ;)
Seriously though I'm not one for fads and notions that there's going to be some alternative or easy quick fix. Indeed I've got irritated by some silly idea that I saw online that eating asparagus was a wonder cure! IMO that's just daft nonsense for stupid or vulnerable or gullible people to believe. False hope for the susceptible!
Rather, I think it's about just being sensible and carrying on not doing anything stupid - like smoking or drinking to excess or being a couch potato. None of which I've ever done in any case and I've always had a very active life. Never be afraid to live life to the full and to take advantage of having a good life.
More than anything it's about being a good patient. Just generally taking responsibility for yourself. Continue with a well balanced diet and maintain your health by doing some sort of activity... whatever turns you on. You said you know you need to start to do more sports... what's stopping you? Keep a positive attitude and mindset and surround yourself with people who are similar. (I'm huge on believing that attitude is infectious) All this just gives you the best chance at living life to the full.
But more important when it specifically comes to CML, be compliant with regard to your check ups and taking your medication. Keep yourself informed and if in doubt about any treatment you get or any staff you come across then never be afraid to assert yourself and ask and even to challenge.
About the only thing I do that's "different" is I drink quite a lot of fluid throughout the day and also tend to drink some odd combinations of anything and everything mixed with tonic water. I want to keep my kidneys and liver flushed through (extensive chemo) and also to help with severe cramps.
Hi, darley, how are you?
Thanks for the kind words. Actually, i have a much more positive attitude now. i fell great, but my doctors told me not to do hard exercises because my platelets are low (86.000). I was very active before my DX. i went to the gym and run 2km in the day i was DX. Like you, i don't think there's an easy way to fight cml. you must be adherent to medication and be a good patient. when i said "help to fight cml", i was referring to maintain our bodies healthy enough to bear up the TKIs and have a good quality of life. CML is still a great part of my life, but now i can look for other things, i can think in a future. :)