Hello,
I have had bone marrow disease for about one year, first MDS then 2 months later AML TP53
For 5 months I has standard chemo of monthly cycles 10 days Cytarabine and 28 days Venetoclax, after being in remission than relapsed. FLAG-IDA was then tried, a mini 5 days treatment but that has now shown through BM Biopsy not to have destryoed the Leaukenia in my bone marrow..
Hematology consultant has therefor advised that no further chemo will be offered for it is clearly not stopping the disease.
Stem Cell Transplant is off the cards.
So thats it, have as much quality of life as I can until infection takes me down.
I am still quite fit, active, driving, clear of mind, useful around house and garden and volunteering and by doing so hope to stay as well as I can for as long as I can.
I will get general health support of transfusions to keep my Haemoglobin levels up and daily meds of anti biotic and anti viral. I may be admitted to MacMillan ward for lesser illnesses but no resuscitation or intensive care.
My wife and I are in quite good spirits (not allowing in throughts of dread but not denying) while making connections for support when we need it.
I hope you all have more positive outcomes.
Regards to you all
John, sorry to hear how things have developed, unfortunately, for some, all the drugs available can not stop the prognosis of these blood cancers.
You may want to consider joining and posting in our supportive Living with incurable cancer - incurable patients only group.
I do know of at least one group member who I supported a few years back who followed the basic same path as yourself and he is still active in the above group. Although I am incurable I don’t post in the group as my condition has been stable for the past 6+ years.
All the very best.
