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Hi everyone.
I’m 34 years old and have been diagnosed with CML last Thursday. I have started 400mg of Imatinib on Saturday. The apt. with my hematologist was rushed and I was not given much information about anything really. Thankfully the pharmacist was wonderful and explained the medication piece.

I was hoping to get information about what are the life implications of CML. Will I need to slow down or do people just keep doing their activities just being tired and unwell?  I have only taken two tablets so far. I felt nauseated for one hour after taking it but otherwise I felt ok the rest of the day. I’m just wondering if I will get sicker as the days go by with this medication or if it means that I will tolerate the medication if I have been feeling ok so far.

This is just a lot to take in and I just want to know other’s experiences with this. I’m trying to juggle 2 toddlers, university full time, and my husband working out of province for the next year and now this.  Just trying to see if I need to plan for extra support.

Thank you for taking the time to read this.

Sandra

Others on this forum will provide you with very useful links and insights on what to expect. My own experience is:

1. Seems overwhelming at first - lots of learning, fear.

2. Lab testing, tracking, more learning. Discovering best drug, dose for you personally.

3. Adjustment, back to normal living - experience growing.

4. Reality you will not die of this disease and very likely will reduce its presence in your life.

5. Your health will improve because CML was a wake up call.

Also - take your Imatinib with food. It helps avoid the nausea completely that way.

Scuba already said this, but take your imatinib with whatever if usually your biggest meal of the day. It really makes a big difference.

We have a booklet here, which you might find helpful. Don't worry about the long and mystifying name of it ("Quantitative Reverse Transcription Polymerase Chain Reaction: A primer for patients"), the first few pages are high level and gives you a good overview of CML.

https://cmlsupport.org.uk/node/20097

Our videos section also has lots of great information. 

https://cmlsupport.org.uk/videos

These two give a good overview of CML (they're essentially the same presentation, the second one is a little newer).

https://cmlsupport.org.uk/videos/2018-uk-patient-day-chronic-myeloid-leu...

https://cmlsupport.org.uk/videos/chronic-myeloid-leukaemia-%E2%80%93-wha...

Thank you Scuba. I like how you’ve reframed this into steps. It appears a little less overwhelming. Hopefully things remain as smooth as possible. Thanks again. 

Oh wow David. Thank you for all the links! I will definitely have a look!! 

Hi Sandra and welcome,

Given your comment about your appointment being rushed you were not given much information about either CML? or treatment options? firstly I would just like to reassure you that you will, in all likelihood, respond very well to treatment with imatinib and/or one of the other 4 TKIs currently available. I am surprised however that you were not given much information and, given your relatively young age, that there was no discussion of your best options.

Imatinib is an excellent therapy and many people respond well to this particular TKI. As David has already advised, you will need to take it with your largest meal of the day-  which is dinner for most. This will help combat nausea and also as most people will be ready to sleep not long after dinner, can help deal with treatment related fatigue-  a very common side effect. I would also add that you try to drink as much plain water as you can throughout the day. 

You will undoubtably have more questions as you go along... do not hesitate to ask for advice on this forum.

Sandy