Just over a week ago my 73 year old dad with diagnosed with Acute myeloid leukemia (Acute myeloid leukaemia (AML)). We found out a couple days ago he has the nmp1 mutation. Today I got word he tested negative for the IDH1 mutation/gene. My head’s a mess at the minute and I forgot to ask if this was a good or bad thing. Obviously more results regarding other mutations to come in the following week but was wondering if anyone in here could answer.
Is it more favourable that he tested negative for IDH1?
Hello @K87, welcome to the Forum. I’m sorry to hear about your dad’s diagnosis - it’s understandable that your head’s all over the place right now. The first few weeks after a diagnosis can be utterly overwhelming.
I can’t give you advice about what the IDH1 result means for your dad, as I’m not a medical expert and this really depends on the full picture of his diagnosis and treatment plan, but the fantastic @BloodCancerUK_Nurses may be able to give you a broad overview of what these genetic markers mean and why they’re tested for. You might also want to read our information page on AML, which explains a bit about genetic testing and mutations.
You could also speak with our Support Services team, who can help you understand the questions you want to ask the medical team and support you through this difficult time: 0808 2080 888 or support@bloodcancer.org.uk. They’re brilliant!
Please know you’re very welcome here on the Forum. There are others in the community who have experience with Acute myeloid leukaemia (Acute myeloid leukaemia (AML)), either personally or supporting loved ones, and they may be able to share their experiences too. There’s also the ‘Related’ function at the bottom of the thread that might be useful, as it can suggest relevant posts and topics from across the Forum.
Thinking of you and your dad. Take care and be gentle with yourself while you’re processing everything,
Sorry to read about your Dad’s Acute myeloid leukaemia (AML) diagnosis, I can only imagine there’s a lot to process and take in. Please do get in touch with us if you’d like to talk things through at any point.
Ceri has linked in a great webpage, which explains the different types of genetics involved with Acute myeloid leukaemia (AML), which you might find helpful to read, it may be useful to get a base level of understanding on these in case more are mentioned in the future. (but please know that it is very complex and confusing, so you are not expected to be able to understand it all or work out what this means).
It is always best to discuss with your Dad’s specialist any that are mentioned, in relation to what significance this has for your Dad and his treatment plan, but like you said, your head is a mess and you wouldn’t have thought to ask at the time. I just wanted to answer your specific question and say ‘yes, it is more favourable that he tested negative’.
The IDH1 (and IDH2) mutation can cause resistance to some drugs/chemo, meaning it might be more difficult to treat. Some patients have limited options for certain drugs due to many factors, and it’s always better to have as many options as you can, in case you need to swap treatment due to side effects or become refractory (meaning the cells are resistant) to that drug. So your Dad not having this mutation is a good thing because if he does need certain treatments, his genetics aren’t going to stop them from being a possible option.
I hope this makes sense to you - like I said, it is very complex.
Please do get back in touch if you need to, we’re all here for you both.
Best wishes, Heidi.