Newly Diagnosed

Hi EmmaJane 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 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.

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.

As for being in hospital for prolonged periods of time it can be hard, but being prepared for this is important.

Over my many years treatment I have had a number of long stays...... although this link Top Tips for the day of your Chemotherapy is taken from a Lymphoma Charity Site the information will help you get yourself ready for treatment.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

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….. the one I attend does have a person with AML in it so worth checking.

Always around to help more or just to chat ((hugs))

Hi Emma

im so sorry about your devastating diagnosis, it’s an almost surreal time or that’s how I found it. I was diagnosed suddenly just under 6 years ago. I’d had flu like symptoms for a week or so. I was just coming up to 61 years old , I was rushed into UHW Cardiff where chemo was supposed to start the following day but was delayed 3 weeks due to infection. Throughout the summer of 2018 I had 3 cycles of chemotherapy and in October was sent home in remission. Unfortunately relapse was spotted in early Feb and I went on to have a bone marrow transplant in May 2019. It was a tough journey but here I am writing this and life is pretty normal again. 
your journey will have some ups and downs but trust the doctors they will get you through it 

Mark

Hi Emma Jane

Sorry to hear about your diagnosis I can imagine what a terrible shock that is… 

I found reading other posts on here helped me so hopefully these posts will help you too. I was diagnosed with AML in October 2023. I had no symptoms at all was fit and well and just back from holiday. I was referred to hospital for tests following a routine annual blood test as some of my blood cells were lower than they should be..the hospital bone marrow biopsy was that I had AML which was a terrible unexpected shock….

Was admitted to UCLH November 2023 for chemotherapy for 5 weeks then back in January for round 2 and currently still here. Feeling fine just need blood counts to increase before I can go home…. It’s been 5 weeks should be out in a week… treatment has gone better than I thought…with only minor side effects in first round of treatment. I didn’t want the treatment but had no choice and so tried to  be as positive as possible get a routine of staying active exercising and wearing my usual clothes rather than hospital gown to keep my identity and not feel like an ill patient.. and that’s been ok for me…

UCLH has a lot of experience and expertise so you will be looked after very well…

Good luck with your treatment and ask the medics lots of questions…I did as I’m curious to know what’s going on and why 

best wishes I’m sure it will go well for you..

Tha k you Mike

Thank you Mark..its nice to read that you are living a relatively normal life. Long may it continue 

Hi

Thank you for sharing. I was admitted today and still not understanding the enormity of it all. What an amazing hospital..even if they have just woken me up at 2am for an ECG...hope your bloods improve 

Take care

Hi Mark great  to hear about your successful transplant and that life is normal again..

Did the medical team recommend you not having a transplant initially as you were in remission and then suggested the transplant when you relapsed?

I am in second round of chemotherapy which should come to an end soon. I was in remission after first chemotherapy so the second bout is to consolidate… the medics are strongly recommending stem cell right away. I would like to see if I could do well without the transplant but relapse seems quite common quickly for AML patients. Did you have a sibling or anonymous donor. The transplant details I have read sounds very daunting with circa 50% chance of success so curious to hear how you found it in hospital and how long it took to feel like yourself again as I hear it can take a year to feel better 

thanks John 

Hi Johnny 

I was in remission after the first round too and had another 2 rounds to consolidate. I think my original consultant was keen for me to go to transplant so she referred me to the transplant team and the consultant there said basically go home and enjoy Christmas there’s only a 30% chance of relapse so I was only too keen to take that option. The good thing is they can spot the relapse way ahead before you actually become poorly. I was having 3 monthly biopsies and this where they spotted it. At the time I felt really good ,I was running 5 miles so I actually went to transplant much healthier than when originally diagnosed. I think in older people relapse is very common only maybe not as quickly as I did. I have a friend who I met in hospital who was about 18 months before relapse. She went on to transplant and is also doing great.

I have to admit I was terrified of the transplant process and I did have quite a tough time, and spent 6 weeks in hospital. However I was only admitted once afterwards. You are very fatigued for a long time especially with twice weekly visits to the hospital but gradually you start to feel stronger.it was about a year when I started to feel fairy normal again. I’m back almost as I was have even completed 2 half marathons. 
Feel free to message me if you wish x

Mark

Hi Mark always good to read a success story like yours. I am coming up to completing my second round of chemotherapy. My dilemma is that as I have a genetic mutation called TP53 the outcome for both transplant and non transplant is not very good so asking the medics about quality of life and how much extra  time the transplant might provide…

Can I ask if you had a sibling donor or anonymous donor and whether you had any unwelcome genetic mutation like TP53 etc I assume not.

its great to hear how well your transplant has gone and you have your life back…. Like you I find the idea of a transplant terrifying but stories like yours and others on this site are inspiring 

cheers 

John

Hi Johnny

My donor was an American male 31 years old at the time. My mutation was NPM1 and FLT 3 

Hope everything works out for you 

Keep in touch

Mark