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I've posted a similar question in the AML group chat.
QUESTION 1: How long is "too long" between consolidation treatments?
QUESTION 2: How often should he be having blood tests ? (he was 2 x a week but now has not had any for nearly 3 weeks - no more have been booked / asked for)
QUESTION 3: Thing is surely IF (??) it is there molecularly then it's nearly 3 months since most recent chemo and things can multiply.
Husband has AML inv 16.
Has had 1 x FLA, 1 x FLAG IDA, 1 x HIdac.
Is in morphological remission as per July 17 biopsy BUT they forgot (???!!!) to do the molecular test so they sent bloods off for that 21 August.
The results are not yet back
That will determine if he only has more consolidation chemo or if it goes to SCT.
I'm really worrying - then again since Jan 26th (diagnosis) I worry about anything to do with his health. Last 2 days he's had pain under his right ribcage and right shoulder. Probably completely un related but my mind worries that it may be to do with the AML.
He's under 2 diff hospitals . Mostly Kings for inpatients and follow ups but also sees our occasionally at our local hospital Medway Maritime in Kent)
*Learning God is in control and every day holds the chance of another miracle.*
I'm sorry that you are having such an anxious time. I will try and answer your questions as best I can! As you progress through treatment cycles, you have the luxury of more time between cycles. This can be a good thing, it can give valuable time to build up between chemo. there is no definite time frame that is 'too long' . I suspect that they are waiting for the results of the molecular tests before deciding what to do next. Inversion 16 AML has a good prognosis and usually does not proceed to transplant but this is dependant on what his bloods were at diagnosis.
It might be worth contacting your treatment hospital team to see if they can do a blood test. Even if it is just for reassurance. 3 weeks is not an overly long time, but when you are in this situation, it can make you anxious. It is only natural to panic when he has health related issues, I suggest you contact your GP or hospital helpline about the pain in his side and shoulder. As you say, it may not be anything to do with AML but would give you peace of mind.
Caroline - Macmillan Information Nurse Specialist
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