1st time here

Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our blood cancer groups.

So sorry to hear about the challenges your husband is having and you as well.

I don’t have AML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

First thing - is he being seen by his medical team?….. as these issues may signal the need for a different approach….. and if he has been seen by his medical team what are they recommending?

It’s the same with pain meds, there is not one pain med fits all. Over my many years I have moved between different types of pain meds especially after my second Stem Cell Transplant as I was sent home in a wheelchair.

I had to have months of Physiotherapy to get me up and walking and the pain was off the scale so my medical team were on this changing meds as we went.

Keep talking in this thread as it will help you and also gives us an opportunity to help you as well ((hugs))

Thanks for replying. He last saw his consultant back in May and sees him again Monday. 
He has been in touch with his GP who told him to go to A&E which he did. They just prescribed him co codamol. We just seem to be going round in circles. He can’t have a home visit as they say he his still mobile even though he is so frail. 
He is sleeping a lot lately also. Could all this be the cancer progressing every thing seems to be going wrong all at once. I don’t know what to do anymore 

First a ((hug))

Good that he is being seen by his consultant on Monday…… to be totally honest your initial go to people should always be his Heamatology team as they need to know about any changes so let’s see what Monday says……. you are going with him?…… this is important.

Between now and before Monday you need a clear list of all the issues he has been experiencing along with the three top questions ‘you’ want to ask.

Have you a name and contact info for his Specialist Cancer Nurse?…… if not do not leave on Monday without this.

AML can become aggressive so it’s good he is being seen.

Take a breath….. and get your head in a place to make sure that this is moved forward in a positive way.

Happy to talk more ((hugs))

Hi Mike

Bill (my husband) is being refereed to our local hospice for a home visit to assess him for pain relief. Yes I always go to the consultant with him. His consultant would not commit to the cause of h pain. We are now waiting on extra blood test results.However he did point on a change in his bloods which I didn’t really understand but spoke to the nurse after. There is a sign that the cancer isrogressing One thing Bill didn’t mention where the night sweats he is having. He is a very proud man and played football all his life up until 6 yes ago. I am now changing the bed daily. His nurse is Clare and I can ring her anytime 

Hi Debs

Good that Bill is being seen by the local pain team from the hospice, the same happens up with us as they are the experts in this area although many folks initially freak out when the word hospice is used.

Night swears for some can be a horrible symptom, although rather normal in Lymphomas I did not have this…… until 3 years after all my treatment was finished and I had a few weeks of them…. and they just went but boy it gets the ‘what if’s?’ going in the mind.

Is he still not having any treatments? ((Hugs))

My husband was diagnosed in April, and had a very similar infection just after his first round of chemo. It led to sepsis, and 6 weeks in hospital on IV antibiotics. Keep a check on your husbands temp and if it goes up phone your helpline straight away.