Acute myeloid Leukemua

Hi Al ajc0454, I noticed your post had not received any reply so thought I would drop in past.

The words that stand out in your post are "I have not had a diagnosis of AML" and "could"

What steps have you taken to get professional medical advice as we are not medically trained and can only look at our own journeys.

I have a rare type of NHL diagnosed back in 1999 and my blood were never an issue in the first 14 years but my understanding is that the nature of AML it would show up in blood tests and high ferritin levels can point to a number of medical issues and yes cancer as the Macmillan nurse confirmed.

Happy to talk more.

Hi, Thanks for your reply. I have been of course seeing my GP for several months and a Haematologist also.

My full blood count has always been within range.

The biggest issues I have are the symptoms I have mentioned in my post, but the bigger worry for me is the continued and rising ferritin reading, to add to that worry was a response I had from one of the 'ask the nurses' via the Macmillan site which as part of her answer suggested that High Ferritin can be linked to Acute Myeloid leukaemia.

Rest assured that is not a criticism of the nurse as she was only doing her job, but it obviously focused my mind on that particular point.

Oddly however my Haematologist has never linked the high ferritin to Leukaemia, but having said  that of course as my blood results have always been within range then perhaps he wouldn't, as a blood result is a scientific fact as is the ferritin, but normal bloods don't point to Leukaemia, so why would you connect the two if that was the case.

Al

Hi again Al, it is all confusing and frustrating.

Yes, if you check reputable blood cancer resources (just did it) high ferritin levels can indeed be linked to Leukaemia as are your other symptoms.

Haematologists are the blood cancer experts so you do need to look to them to solve the puzzle..... have you had a Bone Marrow Biopsy done as this is also one of the diagnosis tools.

Remembering back to 1999 when I was diagnosed with my type of NHL, my consultant was 99% convinced that I had a rare NHL but it took a year, two CT scans and 6 biopsies to find the truth..... you just need to keep pushing the system to get answers.

I am sorry that this may not be much help ((hugs))

Hi again,

haematologist is not prepared to carry out bone biopsy as blood results over last 6 months have remained consistently within range.

says no haematologist would.

to be frank part of me wants to believe that as long as my blood is still good and obviously the blood cancer  drs just use the blood as an indicator to the presence of leukemia it might be ok

However i fear I am in a rare position whereby I have leukemia but as yet for whatever reason has had no measureable change on my blood counts.

Of interest what ‘reputable blood csncer resources’  did you read that you referred to?  I think I must have read almost everything on the internet about leukemia. 

Thanks for communicating.

Al

There are a few like Blood Cancer Uk, Leukaemia Uk and even Lymphoma Action.

I am familiar with those organisations ( not Lymphoma) not sure I saw a link to high ferritin though, must have missed that.

Thanks I will take another look.

Al

I had another look and could I find the comment but found it in this link

www.mayoclinic.org/.../pac-20384928

Hi Thanks, I too had seen that reference.

i am 100% sure I have leukemia but until it shows in blood results I am unable to move on, I fear I am in the hands of fate.

just hope nothing suddenly happens 

Al

Hi

The nurse probably meant that High ferritin is linked to leukaemia because it is a common after effect of the treatment - it happens post treatment because patients need numerous blood transfusions during their treatment and this can cause high ferritin levels.  It is not an indicator that someone may have leukaemia.  

With AML it would show in your bloods straight away because your white cell count, red cell count and platelets would all be out of the normal reference range - these are the indicators of AML 

Hi Aj,i hope u av this resolved now.

I was diagnosed 3 weeks ago with AML,i had been unwell for most of this year,chest infections(2-3) n then came to my local hospital and was told i ad lower respiratory track infection?,but after a month,no voice,lymnoids all swollen,breathing was awful(couldnt even walk to my front door without being out if breath).

Then i came back after a month and within a few hours told after blood tests abd xray i had blood cancer and then told after 24 hrs of being kept in i had AML.

Im no doctor but it sounds u may have something but ur symptoms dont sound like AML,but again im no doctor.

My doctor and asthma nurse hadent got a clue