Recent diagnosis

Hi Shaytan5 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.

Always around to chat.

Hi Shaytan5,

I have AML and was diagnosed March 2023. It’s good that your treatment is starting soon.  While getting the treatment it’s important to listen to your body. I slept most of the time. I had a lot of nausea and found the syringe driver worked best for me. Tell the staff if you have any side effects as they are aware and can offer remedies. I wasn’t able to concentrate enough to read but would listen to podcasts or short programs on TV.  I think you have to free yourself of your responsibilities as much as possible and allow yourself time to get better. I have always been the matriarch of the family and have had to take a step back, but just until I am fully recovered. 

Hi Shaytan5,

Sorry to hear about your diagnosed with AML, I was diagnosed Feb 2023 and after 4 cycles of Chemo went into remmision but relapsed in Dec! I am currently coming to the end of my first cycle of chemo!
Although it can be hard try and keep positive and hope as the process can work, I found talking to the other guys on the ward helped me.

You are in the best place with great team providing your treatment.

Do you know how many cycles of Chemo etc?

All the best

Garry (Gman)

Hello 

Sorry to hear about the individual stories on this post. It’ helps to share some experiences and getting a diagnosis like AML is such a shock. I was diagnosed with AML in October 2023. Had 3 doses of chemotherapy in November and December and started second chemotherapy round yesterday. First round of chemotherapy eliminated the cancer cells and 2nd round designed to consolidate that. My consultant wants me to have a stem cell transplant which would be a big toll on the body and would be tough but is best for longer term cure although relapse is possible. Has anyone on this thread also been offered stem cell transplant or had one. Would be good to get long term remission with just the chemo. Has anyone managed to achieve that?

Hi Johnnylond, I too feel the stem cell is the best long term treatment. I am getting chemo and responding well so consultant would not be considering stem cell for me. It’s not easy but we don’t have much choice. I am just thankful that they can make me better. Just hoping !!

Hi Gman sorry to hear about your relapse.hope things work out well for you quickly..Did your doctor confirm if you were high risk or low risk or offer a stem cell transplant. AML gets very complicated with different mutations such as TP53 which are not good for quick recovery for chemotherapy and stem cell. Did your medical team advise if you have any mutations…

John

Hi Bernadine how is the treatment going for you? Hope you are continuing to respond well to the chemo…

Do you have any additional complications with mutations such as TP53 hopefully not…

I have TP53 but the chemo has worked well but depending on some factors can relapse after remission which is why I have been offered a stem cell transplant which could really help but tough to get through 

John 

I am on the Victor trial. I have 2 mutations. One is NPM1 and I don’t know what the other one is. The consultant said I don’t need to worry about it yet and am afraid to ask as I will look it up on google. 
I am feeling really well but am between treatments.

Hi John,

As you say never good to hear about individual stories but good to share experiences and pleased to hear that Chemo has worked. 

Although my remission only lasted a few months before relapse! I have fiends who were in hospitial with me (Feb-July 2023) who are in remission, which is good to hear with just Chemo and have heard of people who have been in remission for a number of years but not first hand. Good luck on your ongoing treatment and staying in remission. 
Garry (Gman)

Hi John (again)

Thanks for the words on relapse and as it was picked up quickly and was back in hospitial quickly starting treatment. So my consultant never mentioned high\low risk, now the inversion I have usually responds well to just chemo, but not for me! But at least there was the option of SCT. I have “inversion 16” but never mentioned any mutations.

I finished my 1st cycle of FLAG Ida ( of 2) and was let out last Wednesday after ~5 weeks. Yesterday I had my first consultation with the SCT team which is at another hospitial. Although yes it will be hard and a toll on your body for me it’s good that I have the option of SCT which is great. With the next cycle of Flag Ida and then a couple of weeks at home before SCT treatment starts I think (all being well) will be out of hospitial mid - late April. Amongst other things I did find out that after SCT you have to “be careful” for about 90 days as you are at risk of infection! Then takes up to 2 years before the stem cells and your body have jelled completely but as with everything to do with AML & STC it’s all individual. 
Would be good to hear from anyone who has been told the same or different!!
Stay Positive and good luck on your journey.

Garry (Gman)