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My Story

Thanks to Google i stumbled upon this group a while back and was so happy to read how well people are doing here. My diagnosis was fortunate as i am 37 years old with no health issues but by Gods grace decided to do a health checkup and my WBC was 234,000 and after doing my biopsy and blood smeer test it was confirmed that i had CML. Honestly speaking i didn't know.what to feel and generally think of myself to be a very strong person and therefore it was not the end of the world but what definitely helped me was my Doctor was super super positive and said trust me this is no big deal if u compare other cancers or even other diseases for that matter which is definitely the case and therefore the optimist in me saw this as a lucky piece of news. As far as the treatment goes i was diagnosed on 4th of June 2017 and been on Imtanib for a little over 3 weeks and my WBC has noramlised to 10600 and as far as the side effects goes thankfully none other then cramps in the initial stage which were offset by some Aurvedic oil massages (5 mins 3 times a day) as well as.Magnesium rich food as well as calcium supplements. I also do take Aloe Vera supplements as i do believe they also help. My BCR ABL will only be done after 3 months so fingers crossed. By enlarge even my diet is practically the same ofcourse no.red meat and more lean meats, veggies and.fruits and obviously no alchol. Not yet started any rigours exericse as i was advised against it for a while so just walking for about.30 to 45.mins daily helps.. i have been very blessed to have a easy going.Dr as.well as a bunch of.positivity in my.family which also plays such a big.role as the last thing ur body needs is negativity or stress at this juncture.

My questions to the learned group here is the.following:

1) What kind of diet do you all maintain? Meats alchol etc etc ? Anything to avoid, someone mentioned grapefruit?.

2) What is the expected life expectancy under Imatinib? Is it a normal life expectancy?

3) Can i still have kids ?

Thats all for now :). Wish the entire group best of luck in overcoming what i believe is the best of the cancers.. Thanks again to the creators of this site. May God bless everyone who has this and other Cancers...

Welcome, Amit.

You're a very similar age to me - I was diagnosed at 33 and am now 38.

  1. Diet: yes, we all need to avoid a few things - particularly grapefruits. But pomelo too, and seville oranges (though seville oranges are not encountered frequently. Lots of pomegranate is not good either, and the same goes for starfruit. There's no particular need to avoid alcohol, but for general health it's a good idea to drink moderately - no different from anyone else.
  2. The expectation that a patient who continues to respond to their TKI will live to a normal life expectancy. That doesn't mean everyone responds well, and everyone will live to a ripe old age - but someone who does well will be in a great place from that point of view
  3. I am guessing with the name Amit that you are a guy. Things are simpler, then. The recommendation is that with imatinib is that you can safely father a child. For other TKIs it's not quite so clear, but leaning towards the same. NB: for women it is considerably more complicated. 

With regard to the above, this assumes a patient who is doing well, responding to their TKI and not having adverse side effects. The majority, but not all patients. If someone is having liver toxicity side effects, for example, alcohol would not be a great idea.

David.

Thanks a lot for your reply David. Why is grapefruit considered bad for Imatinib ? How about eating meat ? Fortunately i dont like alchol too much anyhow so stopping that has not at all been a problem :).

I hear Vitamin C intake is very important either by diet or even intrusive methods. Any idea regarding that ?

Any other general restrictions??

Meat is no problem. Vitamin C is fine too.

With regard to grapefruit: there's an enzyme in your body called CYP3A4 (which is part of a family of enzymes called the P450 family). CYP3A4 is used when you ingest grapefruit to break it down for digestion. However, grapefruit juice needs a lot of CYP3A4 to break it down! Imatinib, and all TKIs, need CYP3A4 to break them down too, and be digested by the body.

But what is you've eaten a grapefruit, used up all your CYP3A4 (until your body makes more), and then take your TKI? Well, the TKI works away but can't get broken down properly so it stays active in your system for much longer than it should. You effectively end 'overdosing" on your TKI because your body can't break it down properly.

Does that make sense to you?

 

David.

 

Yes it does thank you so much :)

Hi there

 

I was diagnosed in March 2016 and have so far had a brilliant reaction to my medication (Nilotinib).  I went from 234,000 to "virtually undetectible" with a molecular response of 4.5. :)

I have been advised to avoid grapefruit (hate it anyway), pomegranate (not bothered) and Seville oranges.  Not a big deal people say - well I am a huge marmalade lover - the bitter the better - and you try and find me a decent one that doesn't have Seville oranges in.  This has almost upset me more than the CML!

I was advised to 'cut down' on alcohol but was never told to stop.  And when I first started on my medication I wanted to be as 'normal' as possible while taking them.  I don't drink loads, but do like a glass or two of wine here and there - and admit to sometimes getting 'on it' with my friends, but am mindful to drink lots of water too and It's never had an adverse affect on my response.  My aim was not to change my life now I have CML - but simply to live with it. 

Good luck!

Hi

We've had quite a lot of posts about Seville oranges and marmalade over the years.  When I was diagnosed I was not alerted to Seville oranges, only grapefruit - so I kept on eating marmalade, naturally!  I have a theory that the cooking changes the chemicals in the oranges, so they are OK.  I may be proven wrong about this, but I have been eating marmalade for nearly 8 years since diagnosis and am doing just fine.  Jam just wouldn't be the same at breakfast.

Olivia

I think you'd need to eat quite a lot of Seville orange to have an effect. They're also bitter, so would not be used as orange juice so there's no real chance of accidentally downing 300ml of it.  

I don't think a scrape of marmalade will cause any problems! I think it's a bit like pomegranate - you'd need to eat an awful lot of it to have an effect.

Grapefruit is the the most potent fruit-based inhibitor you're likely to come across, hence the focus on it.

Hi there, i am very happy to hear about your progress and couldn't agree with you more when you say we should try and live like normal at the same time be a little cautious which if you think of it is a blessing of sorts in some way to get CML so that we don't overdo anything in our respective lives and stay mindful of our health which perhaps i wouldn't have done had i not been diagnosed with CML so for the ones that believe in the divine i too believe this is the divines way of watching over us :).

No Marmalade cravings for me thankfully but what about normal orange juice is that okay ?

Best of luck and good wishes to all the people in this group. Thanks again to the creators of this group for taking such a great initiative. Take care and havr w nice weekend everyone.

Normal orange juice is just fine. A great source of vitamin C !

 

Just a quick one i was told Sugar is really bad and that it feeds of cancer cells? Has anybody else heard this ? Also does that mean deserts r a big.no no ?

Amit, there's no link between sugar and your response to your disease. 

Really, just stick clear of the grapefruit and carry on as you normally would. 

I know it's tempting to feel that if only we could do something more than take the pills to help beat CML, but the reality is that the pills do the hard work. Staying fit and healthy is good for anyone, but hitting the gym or avoiding sugar isn't the way to cure CML. 

David.

Yes, me too. I eat marmalade on toast a couple of times a week - no problem. Just gone down to 300mgs Imatinib and feeling the difference. Good! Just hope it keeps the leukie at bay this time!

 Hope you are still doing well on 200mgs, Olivia,

Best

Chrissie

Thx David for the clarifications:).

Well done, Chrissie for getting down to 300mg.  I hope that continues well for you, and I agree that the side effects are much less on the lower dose.  I seem to be doing fine on 200, fingers crossed as I wait for my latest PCR.  Since I was told to come back after 4 months instead of 3 at my last check-up, my consultant must think I'm OK.

Olivia

Good news, Olivia. Hope the latest PCRs are still going down.

best

Chrissie

Hi and welcome,

I just wanted  to add to the other comments, that I had trouble with cranberry extracts pills (see thread: my pcr scare). My pcr tripled in 3 months and went back down only when I realized and stopped taking the cranberry extract. The cranberries are probably OK but not the extract. 

Thanks Chrissie

Not perfect news on my PCR - up from 0.019 to 0.021, but I'm not worrying, it's not really much of an increase.  Also, my blood was taken in my GP surgery rather than the hospital so that may have had a small effect due to the time it had to travel from one place to the other (only about a mile, but still).

I trust my consultant when he says he's OK with that.

Olivia

Remember 0.019% is just 19 in 100,000. And 0.021% is 21 in 100,000 - so really a statistically insignificant difference in results.

Hi Olivia

As David has said, such a small increase, not worth worrying about. We will bounce around a little when we get down so low. 

Best

Chrissie

Thanks Chrissie and David

I'm not worried about such a small increase, just hope it's a blip and I'll be back down again soon.  I wouldn't want to have to increase the imatinib, and I think I'm quite a long way off that!

Chrissie, how are you doing on the reduced dose? Have you noticed a difference in side effects?

Olivia

Hi Olivia

Thanks for asking. Yes I have been on 300mgs since June 21st and have more energy, have actually started losing some weight - was getting nowhere despite the gym + classes + walking and my eyes are far less puffy. All good. Am now awaiting my first PCR results on 300mgs and also first PCR on the generic (Intrapharm).

Best

Chrissie

Hi Chrissie

Congratulations - and I hope the test goes well.  I'd forgotten about puffy eyes until I saw the Spirit2 nurse at my last check-up - I hadn't seen her for some time and she immediately noticed the difference.  More energy, yes, I have that too.  I do still get leg cramps, but fewer, and I haven't had one in my hands since I went down to 300.  All good!

Let us know how you get on with the test.

Best  of luck

Olivia

Hi Olivia

Just had my PCR emailed and since starting on 300mgs on June 21st and 3 months+ on generics I'm the lowest ever at 0.0025 so am very happy. Just hope it keeps down as it's such early days but I'm feeling so much better on the reduced dose,

Best

Chrissie

Brilliant!  I'm so happy for you, Chrissie.

Great news Chrissie.

Sandy