You are here

Recently Diagnosed

Hi All,

I am a 37 year old male living in South Africa.

I got a confirmed diagnosis of CML on the 14th of Feb (what a great Valentine's gift) and I have been given 400mg of Imatinib once a day as treatment. Firstly I want to say how helpful this forum has been in terms of information about the disease and people's experiences, I thank you all for that.

Secondly, I have a question. My doctor insists that I take my Imatinib on an empty stomach (to ensure maximum absorption), which seems completely against everything I have read online. So far I have had no major side effects, mild nausea after taking the pill, but nothing major. My question is, is there anyone else who has been instructed to take Imatinib on empty stomach as this seems to be against all the information I can find online because even the pharmaceutical company websites advise taking Imatinib with a meal.

Hi and welcome,

Your doctor may not have read the advice given by most CML expert clinicians as well as the Pharma company involved. It is well documented that imatinib should be taken during or after a large meal.... with plenty of water. This will protect you from nausea and the possible consequence of vomiting. Not all TKi therapies need to be taken with food, but imatinib definitely does. Food will not stop the effectiveness of this particular TKi.

Sandy

 

Hi Sandy, thanks for the reply.

Luckily I have not had any major side effects from the treatment, and the nausea I have is very mild. I was just wondering if anyone here has tried Imatinib with a meal and without a meal and seen any difference?

I have found if I take the pill early in the morning and wait 2 hours before eating or drinking I have no diarrhoea or vomiting, just mild nausea which is easy to deal with.

Regards,
Brent

I have tried taking imatinib with and without food. Like you, I feel a slight twinge of nausea without food, but absolutely none when I take it with food. And also like you, I have not had any other major side effects. All of the literature and the instructions that come with imatinib say to take it with food (but avoid grapefruit) so I am surprised by your doctor’s advice. I take mine in the morning, with breakfast. I reached undetectable status less than 6 months after starting on imatinib back in Nov 2017, so taking it with food really should have no effect on the medication’s effectiveness.

Hi dftitus,

Thanks for the info. Next time I see the doctor I will definitely ask him to clarify his reasons for insisting I take it on an empty stomach. Thankfully I still have had no major side effects but I doubt that it has anything to do with how or when the medication is taken.

Regards,
Brent

Hi there

I'm 41 and living in South Africa, so I just thought I'd say hi.  I was 37 when diagnosed myself and am also on imatinib.  I take it on either a full or an empty stomach and have never had any issues with nausea, and I'm a little bit further along this road than you - so I thought I'd reach out and offer to meet for coffee if I can be of any help.  Not sure if I'm allowed to give my e-mail address on the open forum, but if you'd like to get in touch I'd be more than happy to assist in any way?  My journey with CML has been complicated and I  have done a lot of reading and research... so if you'd like someone who understands what it's like to be a CML patient in good old RSA, I'm here.

Good luck for your recovery!

Martin

 

 

Hi Martin,

I have sent you a private message.

Regards,
Brent

Hi Martin,

We don’t encourage posting your email address on this forum for several reasons - but you can use the “private message” function to swap details, and of course email addresses too.

David.

Hi David

Thank you - I thought so and that's why I checked. Makes sense! This direct message feature works brilliantly and is a great new addition to the site.

Best wishes

Martin

I take my Imatinib religiously every evening at 9 pm with an 8 oz glass of water.  Except for the first few months while trying to experiment with the best time to take the pill, once I settled on 9 pm at night and stayed with it, I have rarely had any issues.  

Hi,

I am 65 and was diagnosed in August 2017 I was advised by my consultant to take imatinib Accord 400mg x1 a day at the same time with food and a pint of water, to also stand up for 30 minutes so the tablet reaches the area. I was already booked to travel to Australia to stay with friends I was a bit worried on how I was going to manage that with the different time scales on flights. I set my alarm on my phone using the 24hr clock and walked round the plane for 1/2 an hour each 24 hours.. I was also told a numerous visits not to drink alcohol or have grapefruit. if I need anything for pain to occasionally use ibrofen but not paracetamol. I love eating fruit and try to eat a good mixture I bought a small punnet of pomegranate and put a small handful in a juicer with other fruits  within 6 hours I had a bad reaction I had a very red angry itchy rash across my stomach arms and legs I went to the medical walk in centre and was prescribed periton and and used calamine lotion.

I get night cramps from time to time in my legs and was told by a chiropodist eating sugary things at night can cause cramp.  

 also experience swelling to my eye area and a puffiness in my cheeks not a lot you can do apart from put ice blocks wrapped in a flannel to try and bring it down.

if you do link to drink alcohol ive been testing items out. Gin Seedlip Grove 42 non alcohol mixed with ice and a handful of froze fruit and fever tree tonic. wine Low alcohol cabernet tempranillo 0.05 % red from Tesco. Sauvignon blanc 0.05% from Sainsburys. Kopparberg alcohol free mixed fruits.

Hope this helps  

  

Hello Patch,

As far as I know, pomegranate is also prohibited to consume for us CMLers, same as grapefruit.

I was told so by both my CNS and oncologist.

Other 'prohibited' fruits are Seville and blood oranges; so no marmalade either. Starfruit is also a 'no'.

I love pomegranate and grapefruit myself, but must abstain.

Take care,

pigeon.

Hi Pigeon.

Thank you for your reply and the extra advise. Its great having this site to be able to connect to people who are helping one another with all this help, advise and support. I like other people have said its scary and unless you have CMI you can't really understand how terrifying it is. To add to that now along comes Coronavirus .  I was diagnosed in 2018 not 2017 I hit the wrong number! its only if you are putting information on the site it needs to be correct.

Take care 

Patch.

 

Has anyone else got debilitating mouth and throat ulcers?