New CML Drug .com

Hi,

My wife is recently diagnosed with CML 2 weeks back and the oncologist has made her start with Gleevec.

I am understand that this is a highly successful medication for people with CML however, I wanted some help and would really appreciate response to the below questions:

Is there any food to avoid ? Can she enjoy chocolates, ice creams etc and all the other food while on Gleevec ?
Are there any other precautions she needs to take while she is on Gleevec ?

I am really impressed with the great work you lovely people are doing on this forum specially Jerry. Keep up to it and God bless.

Thanks

I eat all the foods you mentioned with out any problems. Love my chocolate and ice cream. One of the only foods I stopped eating was grapefruit as it interacts with gleevec. I have been on gleevec for 8 years now. I also stopped drinking any type of alcohol.
Sue Festa

Hi Harsh,
You can obtain information at www.cmleukemia.com/food-and-drug-interactions.html.
See also some videos made by the nurse Carolyn Blasdel at www.cmleukemia.com/carolyn-blasdel-rn--fnp-bc-ocn.html
In my case, I notice that if I take more than one glass of wine, I have a lot of diarrheas.I drink no alcohol but one glass of wine rarely. I take Gleevec after supper to avoid diarrheas.
Welcome tp the group

I hope that this link is OK www.cmleukemia.com/food-and-drug-interactions.html
Also,you can try this link www.cmleukemia.com/yoursquove-just-been-diagnosed.html

When I was on Gleevec I increased my intake of Calcium, Potassium, and Magnesium using Yogurt and a Magnesium tablet. I used the blood tests (Complete Metabolic Panel) to determine how much of each kept me in range (trial and error). I avoided everything I could that had High Fructose Corn Syrup or Sorbitol as an ingredient, and I also tried to stay away from cane sugar. My doctor told me no alcohol and grapefruit.

It was tough because I really like Pepsi.

I ultimately had to switch to Sprycel due to liver toxicity, but I got 4 years out of Gleevec.

Hi Harsh,

You have gotten some really good advice from the others here and I have nothing to add.

Welcome to our group. There are a lot of great people here who are pleased to help other CML warriors and their caregivers. Many of us have had CML for a long time and have amassed quite a bit of CML knowledge. Please feel free to post any CML related questions you might have. Our primary purpose here is to help in any way we can.

Warmest wishes,
Jerry

Hi Harsh: Glad you joined in to find out all you can about CML and Gleevec. I have had CML for almost 13years now. I was in the clinical trial in NY in 2000 when Gleevec was first introduced to treat CML.
Your wife can eat whatever she wants with the exception of Grapefruit, as it interfere with the Gleevec, and she should also stay away from Tylenol as the combination of Tylenol and Gleevec can cause liver problems.
She might find that some foods bother her, as we are all different in how we absorb different things.
Tell her not to get concerned over some side effects that could occur. I actually gained weight with the Gleevec, and I still get the fatigue and some other things that I just live with.
I am undetected now for CML which is referred to as achieving a PCRU. Do not even concern yourself with all the terms. You will learn them as you go. IT would be good if your wife could join in to our conversations also. Please keep in touch and j ust ask anything you want to. Somebody is always here to help and answer.
Susan A.

Recently When my wife was detected with CML we were shit scared but thanks to the people on this website which has really given us some relief specially Jerry, Susan, Craig, Gilles & Sue. I would really appreciate if you guys can help on some of our recent challenges. 

 2 weeks on Gleevec now. But started with Pain in the legs now when she sleeps mainly because of which she cannot sleep well too.  Is there a recommendation to reduce it. Does it happen only in the start or stays forever.

She also feels low in energy about 60% of what her energy levels were & tired / sleepy. Can anyone help me understand why it happens & again any recommendations on improving this.
  
For people who went in remission apart from taking gleevec is there anyother best practice which need ti be followed to reduce the side effects, counts, feel enegertic & get in remission. 

Thank you for the time & look forward for help from the experienced people here as I really want to reduce the pain for my wife.  

Thanks

Harsh
 

what you mean "when you were on gleevic?" your not taking gleevic no more?

Hello,

I was diagnosed with CML in 2010. Ever since that time, one of the things that I think about the most is: what did I do wrong or did not do right in order to get this godless condition. I know that this is a rethorical question because there is no answer to it. But I can not help to think why? I have always been a pretty healthy person, no drugs, no much alcohol, non smoker, eating veggies, fruit, monogamous, lots of exercise. My doctor could not believe the results himself, he said that it was a freak of nature what happened. I was even thinking that he made a mistake and I was playing with the idea of no taking Gleevec at all but rather ride the storm on my own, especially since I never felt better in my life than at that time when I was diagnosed. I never felt sick or ill or anything. But after reading more, talking with people and family I thought that it would be pretty stupid from my part not to take it. I did not want to take the chance of dying young, I mean I would like to have a family some day and die in old age. Anyway, this is the first time I post about this. Talking about food. I eat everything, but I notice that alcohol, food at restaurants and too much food would upset my stomach and make me feel sick. My appetite have declined considerably, I can not longer eat the amount of food that I used to eat. I also notice that dairy is great for me, and that wasabi is a killer, I do not eat the stuff anymore. Anyway, hope that everyone gets better.

Take care.