Acute myeloid leukaemia

A place for people affected by acute myeloid leukaemia (AML) to support one another, ask questions, and share their experiences.

NPM1 marker AML

Bartyboy
Posted by

Oh feckin 'ell Debbie, that's not the news you wanted to hear on a Friday, or any other day of the week for that matter.  A real total sod.  This AML bastard of an illness makes me furious at times, and this is one of those moments.  It goes without saying that you must be gutted, I am just reading about it.  

Total and utter shite news, but this is what we have to deal with, and I know you will.  At the end of the day we have no choice but to carry on and face the new adversity head on.  It will be tough, but with the love and support of your partner, your daughter and family, you'll get there.


I'm be thinking of you over the forthcoming weeks, and sending all the love and positivity that I can muster.


Love, and trade special big hugs,  Rog xxx


DJohn
Posted by

Thanks Rog.

Shit news yes. Ive accepted thats whats going to happen and I will just have to try and concentrate on the positives. 

If I can through it and out the other side and it works it may be the best thing for me.  Its still at such a low level, so as long as i can get to transplant before relapse I have a good chance of it working. 

Besides the obvious risks, when I asked my consultant could it work her answer was 'absolutely'.  Im still in first remission and this could still have happened a year down the line, so I was not out of the woods anyway. 

The good news for all of us with the extra monitoring is that we are lucky that they can predict a relapse by a slight increase at a molecular level, which gives us the best chance for transplant before a full relapse. Before this technology we would have already relapsed by the time it showed up in the blood and our chances would be reduced.

Its crazy because today my bloods were still all at normal levels, so they'd have been none the wiser and I'd be walking around thinking all is fine and dandy when the baddy is still hiding but waiting to get me!

Thanks for the support, will keep you posted.

X

Thehighlander
Posted by

Ah Debbie I have just logged on and seen your post so a big thumbs down for this.

You know I had an instant flash back 4 years as I was well into the conditioning for my first Allo SCT.

We arrived in my little room in the unit on the morning of 1st of June 2014. Later on that afternoon my head SCT consultant and the rest of her team came in past and during our discussions she reminded me/us that without a successful SCT I had 0% chance of getting past about 18-24 months but with a successful SCT I had a better chance of going on longer........ I am now a good 24 months over the time set by my team and am doing good. 

Yes it was hard work, but I have no regrets rolling the dice. Interestingly I did go into both my Allos with active cancer cells so all is not lost, it's more like you are still looking for the correct journey plan to be put in place for you.

Highlander ((hugs))

Mike - Thehighlander

Some journeys take us far from home but some adventures lead us to our destiny CS Lewis

SCT NHL TCell

DJohn
Posted by

Thank you

Im hopefull about it, but not looking forward to the conditioning treatment, you had this twice im assuming? Not sure how they make the decision on what to give you. I don't have a sibling match. Was yours an unrelated donor? Ive heard there's more chance of problems with unrelated.

X

Thehighlander
Posted by

Hi, yes my brother was a 10/10 match but there is only a 20% chance of this happening in the UK so am very thankful.

There are mixed messages about unrelated donours and I did ask my consultant this very question as it had come up in a thread a while back and she said that in her opinion it's not a great issue now as the control of the matching and also the ability to help encourage the graft to take is improving all the time. She also said that in some cases a 9/10 is the road to take but it is all dependent on each patients situation.

We had two types of Conditioning came back once the referrals to other SCT centres had been done. So we went with the less aggressive and if it worked great if is didn't they would take the big guns out and that is what we had to do but I actually did OK with the big gun Conditioning but bizarrely I had a very bad reaction to my brother cells, this did not happen in the first SCT so I ended up in ICU but you could have a look at my profile for the War and Peace version ;)

Conditioning is very individual for each person even with exactly the same type of blood cancer, it is an art and the Consultants are at the top of their profession. 

That is why I call a SCT journey a Magical Mistery Tour ;) but the destination can be a rather good place to get to.

Highlander ((hugs))

Mike - Thehighlander

Some journeys take us far from home but some adventures lead us to our destiny CS Lewis

SCT NHL TCell

Alzjunkyard
Posted by

Aw Debbie, so sorry to hear your news. You sound ready for next steps, which is good. Not sure I could muster the strength to do it all again. I will keep you in my meditations and hope for a quick and easy recovery. 

~Alissa 

DJohn
Posted by

Thank you Alissa. I'm rubbish at meditation my mind loves a good chatter!

Could I just ask if you don't mind. Did you have a relative as your donor or a stranger? Also did you have full conditioning including radiotherapy?

I know its going to be hideous im prepared for that, but if it works and I can stick around for my little girl it will all be worth it.

Hope you are ok, well done for getting through it. You are out the other side at least and things can only get better. 

Debbie

X

Nigeg
Posted by

Hi,Deb,I know it's easy to say but please don't let the concept of an sct scare you too much.i had one 5 years ago and have never had cause to regret it.it is one of the best things that ever happened to me.i can see my grandchildren and read books I always meant to and live my life as well as possible.yes the conditioning is not pleasant but it is a means to the end of getting your life back,maybe not the same but for me it is better as I appreciate it all the more because I could easily not be here but to the help and love of others I am.you will be also be ok I'm sure if you take all the opportunities that come your way.just believe in your own power and trust the guys who are looking after you,Nige

DJohn
Posted by

Thank you Nige

That is what I'm hoping for.  It would be so amazing to be 5 years on and no longer worrying about relapse or my little girl losing her Mummy. Its been 8 months since diagnosis and I'm fed up of worrying about not being here for her growing up. It must be amazing to go back to not having to worry how long your going to last and to be able to get on with your life.

It is wonderful for you to be able to enjoy your grandchildren.

Thank you. It always helps to hear happy endings!

Lozzadd43
Posted by

Hi Debbie so disappointed for you receiving that news after everything youve came through it doesnt seem fair

a sct is a scary prospect and this could well be my destiny too but keep your positive mindset  you have come this far and if this what it takes to beat it forever then so be it,  im sure your daughter is foremost in your mind and you will get through it, at the end of the day we are mums and we will do everything in our power to be around for our children

 ive no doubt you will get through this and it will all be worth it, I have been to a family party today my cousins husband has just celebrated his 10th birthday folliwing a stem cell transplant in 2008, I have heard of so many success stories, thankfully you know this soon and are not 12 months down the line having to try and get back into remission, 'll be thinking of you these next few weeks, if your on Facebook the Anthony Nolan website is great so many positive stories and useful information on there


If you need anything or just a chat I'm here anytime xxxxx

Alzjunkyard
Posted by

Hi Debbie. My SCT donor is a stranger. I know nothing at all about them except that genetically we are similar. Prior to SCT I had two rounds of cyterabine and midostaurin. Then I came down with pneumonia and so everything was put on hold. Beat that back and started the sct process off with a week of some other chemo only. No radiology for me.

Use your love for your daughter to keep you going! I have two teenage sons and I just kept thinking that if they lost their mom now, they'd probably become drug addicts. As it is, one of them is failing half his classes and will have to make them up. Grr... who's got time for that?!  ;)

~Alissa 

DJohn
Posted by

Thank you Loz

Very scary prospect. Hopefully you won't ever have to have one. My NPM1 never turned negative. It is a worry until you get to two years though and for everyone in our situation. 

Im just going to have to be brave and hope I get through it and can be celebrating years down the line.

Thats lovely for your cousin. Gives us all hope that we could well still have a future long term.

X

DJohn
Posted by

Thanks Alissa

We will never stop worrying for our children, but like you say they are our focus to be strong and to get through these awful treatments.

X

Lozzadd43
Posted by

Hi everyone, just thought I'd give a quick update had the results of my bone marrow after round 3 and I'm still in complete remission with the marker negative so quite a relief, im nine days post chemo, still getting home leave but having to stay  in hospital at night , shouldn't moan but its' so hard having to leave home each night and can't wait for a night in my own bed its been 16 days and counting lol!! 

the time is really dragging i think it's because I know that' my treatment is done and just want to get home to some normality,  but the news today has really lifted me, just got to try and stay infection free now whilst waiting for the neuts to come up then will be Taking my boys away for a well earned break 


Hope everyone is doing well, keep fighting on and winning the battle 


Loz xxxx

jaymacabc123
Posted by

Fabtabulous that the marker is neg - yes must be boost to know all this treatment has got you to the place you need to be! You’re truly gonna have earned that break away with ur boys at the end of this.  It’s genuinely so heartwarming when we hear others results are good.  

Today it is exactly (to the day) one year since husb started his 3rd round.  (He had 4) What a diff a year makes and this time next year you’ll be able to look back too xxxxx



 *Learning God is in control and every day holds the chance of another miracle.*