my partner has been diagnosed with acute myleod leukaemia and just getting over the shock element. Starting chemo next week. He’ll be in hospital a couple of months. It would good to speak with others with same condition x
I am so sorry to hear about your partner's diagnosis. We have information on our website on acute myeloid leukaemia which you can find here and which I hope will help answer some of questions you may have following the shock of the diagnosis. This includes a section on chemotherapy treatment for AML which you can read on this page. I hope the treatment goes well for your partner and that you meet others on our site who have the same condition. I've done a little search for you and found another member who posted recently [@screamqueen] whose sister was also recently diagnosed with AML. Hopefully you will be chatting to one another via this forum soon and you can read her story here. You will also find on that same thread other members who have been affected by AML such as [@Isabelle75] , [@Ginpo] or [@Beingme45] I am sure they will be along soon to share their story with you and answer any questions you may have.
Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.
I hope this helps and that you will soon hear from others who are or have been in a similar place.
sorry to hear you’re going through this too. The initial shock is pretty scary so I found it really helpful to hear from others who are in a similar place. I hope your partner is doing ok. My sister has finished her first 10 days of intense chemo just yesterday and they’ve started her on a medical trial on Friday and she’s doing well - it’s no fun and there’s obviously been plenty of wobbly moments but she’s staying positive and calm.
My friend gave me good advice to not google the condition late at night as things seem too overwhelming and there are differences in the prognosis for AML based on the genetic markers, age and health etc, so everyones recovery will be different - easy to get swamped by medical stuff or upset by statistics that don’t tell the whole story. Another kind lady here put me onto a very helpful website called “Bloodwise” that has info that is very clear and factual.
I’m new to this too but if you have any questions then feel free to ask - it’s amazing how quickly you will normalise the unthinkable so the shock will pass and you can then focus on bringing him things to help him pass the time in his hospital room during chemo better. Find a good bossy nurse that’s been there a while and ask what things you’re allowed to bring in!
It really is so important you look after yourself too so take care, plenty of deep breaths and stay well xx
thanks for replying to me, I found it very comforting. We have got over the shock now, and looking at treatment plan. He has signed for clinical trials, and chemo starts on Wednesday. He is pretty positive but really bored as he can’t leave his room. I hope your sister continues to stay positive. Has she had many side effects? It is pretty overwhelming at times.
sending love and positivity to your sister and you x
Thanks. Good luck with the trials. My sister says the trial tablet she has to take daily is massive and smells like rabbit poo - she doesn’t care as long as it helps!
re side effects..
Shes had some sickness so they adjusted her antisickness meds and she’s doing well now on that front. Chemo normally bungs you up which sounds minor but can be very uncomfortable so moving around the room and prunes etc all helps! Mouth sores and dry lips so they’ve given her antiseptic mouthwash and I bought her a lip salve, so that’s more comfortable. And having a few tasty (individually wrapped) treats helps with taste buds going weird.
She has literally no working immune system so they’ve said to expect infection as a ‘when’ not an ‘if’ (she’s back on antibiotics currently.) It’s hard as her kids and husband are buggy with colds so she can’t see them. But, as she says, she’s playing the long game on this one so having to get through what’s least risky now to give her best chance in the long run. Also limiting visitors that are higher risk in terms of their jobs exposing them to lots of bugs (ie teachers and nurses) to reduce potential infection. Although if the visitor is symptom-free and has good hand hygiene there shouldn’t be a problem I’m told. Face time is emotional but helps keep contact.
Radio apps, audio books, notebooks to make lists of things that need to be sorted - all have helped a little with the boredom. She signed up to several ‘groupon’ little courses - she hasn’t the energy for big stuff but some of them are just a bit of reading then a Q&A. Makes you feel like your time ‘stuck in that room’ is productive.
She’s still got her hair. Our mums going through chemo for breast cancer at the moment and lost it almost immediately she started chemo. Sister is planning on letting the kids cut it - brave on all accounts!!
