hi all, im new on here
I,m now 59 years old and last june was diagnosed with aml ( flt 3 + npm1 mutation ) with 9-12 weeks to live.
I intially started 2 cycles of chemotherapy ( Daunorubicin + Cytarabine ) + midostaurin which put me in remission.
I then had 2 further cycles of high dose Cytarabine + midostaurin which managed to put me in complete remission.
Incidentally the hospital stay was 4 weeks for each cycle with a 4 week break at home inbetween .I had chest infections, chronic nose bleeds, skin rashes and conjunctivitis whilst having hospital treatment but was ok when out of hospital. I finished treatment the week before christmas so was lovely to have finished with hospital and spend time at home with family and friends.
I am currently on midostaurin for a year until next january 2025 ( 2 weeks cycle 2 weeks off )
Since the beginning of the last chemotherapy cycle ( december 2023 ) I have never felt so tired , fatigued , depressed , anxious and I suffer with brain fog which makes it difficult to absorb or understand things !
I am really wondering if other cancer patients who have reached complete remission and have taken similar drugs feel better physically and emotionally after finishing their treatments ??
many thanks
clive
Hi Clive clive m and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well…… My story is rather complicated you can See my story here.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a few people with AML in it so worth checking.
Always around to help more or just to chat
Hi again Clive clive m ….. the world of blood cancer is indeed very very complicated. It’s not just the groups Leukaemia's, Lymphoma’s and Myeloma….. there are actually a good number of ‘other’ blood cancers…… even in Lymphoma’s there are over 60+ types and subtypes …….. and on the whole there is no one treatment fits all.
When I was first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 when the second more aggressive NHL came along taking me to stage 4…….
But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now a month away since my last treatment 9 years back and we continue to look forward to what else life has in store first us to enjoy.
It’s all about controlling and enjoying the stuff that is in your power to control and as best as you can navigate the areas you can’t control.
