AML

Embrace it and go for it Johnny. Exactly the same for me, except my variant and age ruled out the intensive, a more gentler version failed, and I'm looking at weeks now. So take that chance with all it's challenges. It's the chance of remission and a cure. It's an incredible shock. In July I was fit and well and active with no other issues. This random thing is remorseless and I have no future. You do, so work with your consultant and I trust your life will be restored to you. 

Antar thank you so much for your quick reply which has had such a  profound effect on me reading it. I am so  sorry that the gentler version didn’t work for you.  Was it Azacitine. Your post has really helped to get everything in perspective and I wish you well 

Hi Johnnylond and 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 Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well……. more so as I have had 2 Allo (donor) Stem Cell Transplants (SCT).

The SCT journey can be challenging so talking with others who have navigated the same journey (regardless the type of blood cancer) can help a lot.

We do actually have a dedicated Stem Cell Transplant support group where you can connect with others who have ridden the SCT rollercoaster. Do join the group and have a look round…… and when you are ready you can introduce yourself to the group by putting up your own post.

Hi Mike very inspiring to read about your experience since 1999. Just joined this forum today and can already see the value, support and compassionate advice it provides. Helps you remember you are not alone. I will take a look at the SCT forum too…

Hi Johnny

I know exactly how you’re feeling. I was diagnosed last October ( 2022 ) 

i was at work one day then catapulted into the hospital the next day, It has been a rollercoaster ride ever since. 4 rounds of chemo then stem cell transplant in July. 
I was very lucky and really did not have too many side effects from the 4 rounds of chemo. 

I have just hit my 100 days post transplant and waiting on the latest bone marrow results

I still say it’s a rollercoaster ride as there are so many ups, downs, twists and turns. Overall though I am thoroughly grateful for my medical team,  I’m grateful to my donor and all donors that have already donated their cells or are currently on the registers.  It’s still early days for me since Transplant but I’ve been feeling pretty good thankfully.
If Transplant is what your team advise then I would go for it. 2 out of my 4 weeks in the Bone Marrow Transplant Unit were tough but I did sleep rather a lot which helped. 
From my experience of STC , I would say it’s do-able. 

Best Wishes 

Hi Fifimac thank you for your very inspiring story. Good to hear minimal side effects from the chemo and good luck with the pending confirmation on the SCT. 
Your admittance to hospital sounds very dramatic and so pleased to hear you have achieved such positive progress. 
Please could I ask if you already had a diagnosis of AML and any symptoms considering you were still working

i have AML diagnosis but still currently feel fit and well which seems unusual 

thanks

john

Hi John

Prior to my being admitted I had very few symptoms, I had suffered a bout of food poisoning a month or so beforehand and I felt tired and breathless, I thought maybe it was something lingering from the food poisoning. 
If it hadn’t been for that I wouldn’t have gone to my GP, he took blood tests and I returned to work after seeing him. I passed out at work & was sent home. My GP phoned me that afternoon and said I was anaemic and to  report to Haematology ward first thing next morning and that it was serious !!

In my ignorance I thought I probably needed a pint of blood and I’d be fine. I was admitted the next morning and so it began … bone marrow test and then told I had AML and I would need to start Chemo asap. 
4 rounds of chemo, first two rounds were on AML18 trial which as I have now been told , was absolutely no good for my type of AML as I have NPM1 mutation. 

I did not achieve remission. My local team were in discussion with Bone Marrow Team in Glasgow and they suggested Azacitidine & Venetoclax regime with the hope of going for SCT at the end of that.
I did achieve good result ( but not complete remission ) but  my counts were taking a long time to recover. It was almost 3 months before they came back up to an acceptable level. I had a date set to go to Transplant and had another bone marrow done. 
Due to the length of time I’d gone without treatment the disease had crept back up so they postponed transplant and I had another different chemo, to  try and get me in remission or as near as and then go for Transplant. 
Luckily it did the trick and I was admitted to QEUH  in Glasgow on 4th July and had SCT on 12th July. 

I have been doing pretty good since I got home and I am now awaiting the results of day 100 bone marrow test. I am praying  for good result ! 

The Transplant is do-able ( my opinion ) and if it is what the experts agree you need then I would listen to them. Don’t be afraid to ask questions of course. 

Anything else you’d like to ask me then by all means do. 

Take care and best wishes 

Hi Fifimac

You certainly are right about a rollercoaster ride with so many rounds of chemo and then eventually the SCT 9 months later. A great testament to you and your positivity such an amazing story. 
Thank you for asking if I had any questions which I do have a couple if I may…..
Did you and the medical team only find about your NPM1 gene and the importance of that after the first 2 rounds of chemotherapy? 
Was the AML diagnosis based on the number of immature blast cells from your bone marrow biopsy or other factors like levels of neutrophils, platelets white and red blood count. My biopsy showed blast cells of approximately 30% plus low neutrophils and platelets. 
it’s such a scary and complex subject and not easy to know what questions to ask the medical team so the real examples of people such as you are so important. My thoughts are with you and good luck for the 100 day post SCT milestone.

thanks

John

Hi John

How are you ?

I think when I first went into the hospital I had 40% blasts and I didn’t hear straight away about the NPM1 gene. 

As my treatment progressed my Consultant explained that the Leukemia wasn’t showing up in my blood but this NPM1 faulty gene was still present at molecular level. It was proving to be very stubborn. 
They did manage to get it to a very low level but it never completely disappeared !!

The Glasgow team were happy enough after the fourth round of Chemo  that it was at an acceptable level and  to go ahead with the transplant thankfully. It really is a very complex illness and so many different mutations. 

Please keep in touch when you can and also please ask questions too. 

Take care

Hi Johnnylond

Sorry you have had this devastating diagnosis. I was 61 when suddenly rushed into hospital to be told I have aml. I couldn’t start chemo straight away as I had persistent infections,fungal pneumonia etc I was pretty rough. After 3 weeks I had the aml 18 chemo and went straight into remission ( I too have the npm1 mutation) .After two more rounds of chemo over the summer of 2018 I remained in remission. They decided at that point transplant wasn’t necessary and I had 5 months of bliss but alas after a biopsy in January 2019 they said the aml is returning ( I felt absolutely fine at the time) I was admitted immediately 24 th Feb for Flag Ida chemo ( very strong) this got me back into remission and I went on to have a bone marrow transplant ( my donor donated bone marrow rather than stem cells). This was in May 2019 , it was a tough few months and almost a year before I started to feel normal again, bur now life is virtually back to how I was before aml, I am running half marathons,cycling etc. I hope all goes smoothly for you ,feel free to message me if you wish.

Mark