Mum diagnosed with leukemia age 53 on Friday 17th 2020

Hi Nicola, first I would like to say sorry that you and your mum are suffering. The disease presents symptoms that other non serious illness also present so not one of the first things doctors think off, but I can understand your situation and concern. It was a good month before the doctors diagnosed my AML. But the main thing is she is being treated. I am registered with Addenbrookes too they are good and have a lot of experience. The bone marrow extract will show which cells are affected and what the treatment is. Once you know I am sure there will be people on this and other groups that have been through the same disease. It is difficult but you have to ensure you are supported too as the disease affects the whole family. My best wishes for you both. 

Nicola, I would tell you that my story was very similar and I've survived. The next few weeks will be tough for your mom but she can recover from the infection, and start chemo for the leukemia. Be strong and talk to her doctor if she doesn't seem to understand the plan. Her brain will be foggy from infection and chemo for a long while.

Good morning and I am pleased to see some folks have picked up on your post.

I do hope that mum is getting on OK with here BMB.

The diagnosis journey your mum had is very familiar to may folks who have been diagnosed with a blood cancer - blood cancer is often called the 'invisible cancer' as it is that hard to find the truth - In my case it was 21 months journey for the truth....... but its now all about the future, what happened in the past is best left in the past and put all your energy into moving forward with your mum.

Clear information is so so important as this is the only way to treat her effectively - yes its hard to see her in the weak state she is in at the moment - but lets look for a corner to be turned and a more positive direction found by her team ((hugs))

Hi Nicola, I’m so sorry about your mums diagnosis. My dad was diagnosed June 2019 after feeling really unwell and he had 0 energy to do anything! Luckily he was diagnosed quickly as my boyfriend works at the doctors. He came in with an infection and once diagnosed he didn’t leave the hospital until chemo cycle 1 was over!

its so scary and so heartbreaking, but take things day by day. This diagnosis doesn’t mean it’s over, there is treatments for this and treatments that work! I look obsessively at others stories for stories of hope and there is some out there. I felt I lived in a different reality to everyone for quite some time, but it does get easier once you give yourself time to get your head around this.

sending prayers

Hi Jackie, I saw your post in which you make a reference to it taking so long to get an AML diagnosis.

do you mind sharing your story with me.

currently I am concerned I may have AML mainly driven by some odd blood results but also some storing that have affected me. I am trying to reach out to others to see if there is any similarities.

Thanks Alan 

It's me I'm back again. Everything was going so well up until today. We have been told it's returned and they can't give another round of chemo...why???? They are going going give her injections inther tummy. What will this do??? I can't cope I just don't know what to do

Hi , sorry to hear this news about your mum.

When a relapse comes along it’s important to get clear information for her clinical team as they are the people who understand how her AML is presenting.

Over my 21+ years with my NHL I relapsed a number of times and my first question was always “so what is the next plan and how well will it work?”

The only injections I had in my tummy were G-CSF injections once a day for 4 months following my second Stem Cell Transplant..... These were used to make my bone marrow work more effectively and make more of the different types of blood cells especially platelets.

Lots of questions to be asked.

It’s always good to talk and the Macmillan Support Services provides lots of information, support or just a listening ear. So give them a call on 0808 808 00 00. Most services are open 8am to 8pm, 7 days a week.

((hugs))

Thank you for your reply. I just don't understand why they can't try again? I was her stem cell doner and why can't they try again???? The injections have chemo in them too so will this help? I'm in absolute bits I just don't want to do

First take a big breath and I am sending a virtual ((hug))

There is a limit as to what amount of treatment the body can take.

I have had two Allo (donor) Stem Cell Transplants. 2 Allo SCTs were always the plan. If the first very new condition for my first Allo SCT worked I would walk out if the hospital, recover quickly and move on with life.... well I did walk out of the unit and had no post SCT issues but the graft failed within 6 months.

The final Allo SCT was a last roll of the dice...... I was very ill throughout the SCT and the recover took yours but I have been in remission since Sep 2016..... but at this point in time when it comes back, I say when, as there is no cure for my type of NHL..... there are no other treatments available at the moment and would have to move onto Palliative care.

You have to have a good talk with her team so that you and the family get a clear understanding as to what the road before you all looks like.

((Hugs))