New diagnosis with TP53 mutation

Hi ButterflyWings22 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 and Stem Cell Transplant 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.

There are a few active group members at the moment so let’s look for them 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.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

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

Hello butterfly wings 22

not sure if this helps but wanted to share my diagnosis…

I have been diagnosed recently with AML with TP53 mutation around 6-10%  I have no symptoms and due to start chemotherapy treatment this week. I have 30-35% blast bone marrow cells. So too early for me to say if it will be successful but I know TP53 has a negative prognosis.predicted outcome…What treatment has your husband had chemotherapy and stem cell transplant? I am mid 60s what age profile is your husband 

Hello J, thank you for sharing your prognosis with me, it sounds similarly awful. My husband is having chemo now but has contracted pneumonia. With no immune system we wait for the antibiotics to show a result. They talk about infection being a high risk during this treatment. He is 56 and the plan is 4 weeks intensive chemo, straight to stem cell replacement treatment.  You are both young, do you have a family? What led to your diagnosis if you have no symptoms? Where are you based in the UK? Wishing you loving kindness on your journey, we have to cling to those possible chances of success. B

Hi B & J,

I was at where you were last February with AML (Inv 16) and just starting my treatment Intensive Chemo but with 4 cycles which took 6 months but have not had stem cell replacement. I am currently in remission so the treatment can work!

Sorry to hear about each of your story’s.

Having been through Intensive Chemo, I would like to say try and stay positive as this helped me but understand not everyone has the same outlook as me.

Getting an infection during Chemo especially when Neutropenic (No immune system) is common, I had an infection during each of my 4 cycles of treatment! you are in the right place and with antibiotics hopefully it will tackle the infection.

I know this is a hard time for both patients & family, for me it was good to talk about the treatment and what to expect. I used to make notes of daily blood count (when I was well enough!) so I could see what was happening along with asking the Dr’s what they mean.

Good luck on your journeys.

Garry (Gman)

Hi G. Thank you for taking time to reply with your helpful insight. I am remaining positive and so is my husband (when he can).  I hope J also finds comfort in your comments. Normalising infections is helpful too. Wishing you continued good health. B

Hi B,

Good you are both remaining positive (when you can)! Thank you for the wishes and if I can answer any questions happy to try and help. Best wishes Garry 

Hi Garry

Goof to read your story and congratulations on being in remission great news! 
Where you offered or considered for a stem cell transplant as well. I am starting chemotherapy soon and the medical team are very keen for me to have a stem cell if I get into remission from the chemotherapy. I understand why although its even more intense than the chemo treatment 

best wishes 

John

Hi John,

Thanks for the congrats on remission and hope we all get there.

No not offered stem cell transplant as the best course of treatment for AML inversion 16 is 4 cycles of Intensive Chemo. I believe the treatment depends on the type of AML along with your health> I know of a couple of guys who were in hospital the same time as me and had one cycle of chemo and then went for Stem cell transplant. 

Do you know how may cycles of Chemo has been recommended? 

I understand that if I relapse that stem cell transplant would be an option (if suitable) and yes I would go for stem cell if offered

Good luck on the Chemo, I am sure your medical team will talk you through the treatment and answer any questions but as most of them have not had the treatment sometimes its good to ask someone who has. I think this is why this forum is so good and wish I had joined when I first was diagnosed.

Garry