AML

Hello Susan, 

I saw your post just now and want to reach a hand out to you because I too have been through that stage of utter distress andl lonliness and uninformed.

I too am 72 and quite fit and healthy and was diagnosed July 2021.

I am in treatment still, don't yet know where it may lead.

Not a medical expert, I know only what I have been through: but from info I pick up this is all very individualized in the diseses progress , the treament and your reaction to the treatment, so definitley not one size fits all.

The one potential fix to AML is a Stem Cell Transplant, dependent on so many factors that it may / may not be possible. Being in our 70's we are on the cusp of being suitable. I wait decisions of whether I can qualify.

The treatment given me so far has been;

Six months of monthly cycles of chemo injections (Cytarabine) for 10 days and 28 days of chemo tablets (Venetoclax) concurrent. This put me in remission after 2 months but relapsed after 6 months. The treament wasn't too bad, felt a bit rubbish during and 2-3 days after the injections, no other effects outwardly.

June 2022, next step was to try stronger chemo, a combination of drugs called FLAG-IDA requiring hospital stay for 5 days because it was administered intraveinous drip and observation needed. At the end of the 5 days I was feeling rubbish but still active. My reaction to chemo all got a bit mixed up then because with very low immunity caused by chemo  I became infected with other diseases that laid me out very poorly. My hair thinned significantly a few weeks later but that a easy comprise on the path to improvement.

And there my my story is up to date. I have had two good active weeks since those other infections cleared up. Tomorrow I have a clinic visit with my Consultant, to hear the result of my latest Bone Marrow Biopsy, around which all treatment is dependant. 

There has been good support in the way of transfusions to boost my Hemoglobin levels and keep me as active as possible.

This has been a journey of many downs, a few ups, and a case of forcing myself to try to be positive, of locking the ever present fears to the back of my mind. I have been through every emotion possible.

The only thing we can contribute is to stay mentally strong, stay as fit and healthy as possible and follow medical instructions.

My Best Wishes to you and yours, a tough journey for us all.

John Parsons, Norfolk UK

Hi Sue SusanW and a second  welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have AML but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand this journey rather well.

Good to see that JohnDP has picked up on your post. We could line up 10 people with the same condition and on the same treatment and get 10 different stories. I had over 750hrs of very strong chemo over my 6 cycles (5 nights/6 days on my two IV pumps 24/7) and I did ok….   but I have talked with others who had a challenging time - it is that diffrent.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00.

This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Leukaemia Care UK on 08088 010 444 who produce very good information and various support platforms including their Buddy Scheme

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and provide support for all the family.

Always around to help more or just to chat