New Diagnosis

Hi BrightonGal 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 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this 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.

I will say that over my main treatment between late 2013 and late 2015 I had over 800 hrs of chemo and on the whole it was ok….  

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.

We also have our Ask an Expert section but do allow a few working days for a reply.

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 BrightonGal

Im sorry you’ve been diagnosed with leukaemia. It’s a horrible time mentally and physically. I was diagnosed with aml 6 years ago aged 61 but here I am feeling good and living a normal life, something I never dreamed of in the first few frightening weeks. 
 I had the aml 18 trial , three cycles of chemo over the summer of 2018 . 10 days, then a few weeks break then 8 days another few weeks to recover and then 5 days. I was dreading the chemo but I seemed to manage ok , you’ll probably get a few infections but your team will be on the case with plenty of antibiotics to fight them. You have youth on your side , just trust the medical team and try not to google too much. I hope all goes smoothly for you , feel free to message me if you wish.

Mark

Thanks so much for your reply. Even this has helped me so much to know someone is out there. I’ve reached out for a buddie as really think this will help me! 

Hi mark,  thanks so much that’s really reassuring. I’m worried about the chemo side the most as it’s just the fear of the unknown. I’m avoiding google. However the rest of the family cannot stay off it which doesn’t help. Would rather not know if I’m honest

Hi BrightonGal

My daughter was diagnosed with AML at 17years old in January 2024. We had no clue what to expect. She has had 3 rounds of chemo and sailed through each round, only feeling a little sick but she got meds to counteract that. Like you, my daughter didn't want to know all the ins and outs of everything. She just trusted her medical team and accepted all the treatment she required. It has been a bit of a rollercoaster as you will find things will constantly change from one day to the next. She is now at home for 2 weeks before she goes for a stem cell transplant. Her Leukaemia is now at less than 1%. It was at 86% when she got diagnosed! So hoping that the transplant provides a cure for her. 

Just take a day at a time, don't google, and don't look too far ahead or you will likely get overwhelmed with everything. I cant stress that enough. You will get through this and you will get to know your medical team very well. They will drip feed you information a bit at a time as its quite a complicated process. They will be a good support system for you too. Good luck with it all. Message anytime though.

Hi again Mamabear15 great to hear the progress your daughter is making.

Do remember our dedicated Stem Cell Transplant support group. The SCT process is demanding…… so talking with others who have done the journey or supported family can help a lot.

Omg thank you so much for your reply this has helped me so much just to know there is someone else my age going through this. I start chemo Tuesday but this has made me feel so so much better!!

Sorry forgot to add I will also be having a SCT later down the road. But this won’t be until I’m in remisssion x

I have had 2 Allo (donor) SCTs for my 2 types of Lymphoma, I am 8.5 years out from my second Allo SCT and getting n with life.

Do use the dedicated Stem Cell Transplant support group as talking with others who have the ‘T’ shirts will help a lot,

Aww good luck with today! I'm so glad that you feel a bit better about it now. Take it easy.