I have relapsed Acute Myeloid Leukaemia but now a totally different mutation than I had last time. I was first diagnosed in 2019, 3 rounds of intensive chemo, one aborted stem cell transplant to my sister due to antibodies, no other donor due to rare tissue type. Experimental drug for 12 months, (which we partly had to pay for). Remission for exactly 1 year! got the horror phone call end of Aug 2021. New mutation P53, very chemo resistant. I have had 2 rounds of Aza and Venetoclax, a 3rd round will probably not do much due to my disordered bone marrow. I am being given a double cord blood transplant in the new year and very grateful as I hope it is the weapon I need! anyone else have either a p53 mutation or a cord blood transplant out there??? Thanks
Oh @Corrina I’m sorry to hear this, I cannot imagine how worrying it all must be for you at the moment. I’m glad you’ve started this thread, hopefully you will hear from someone who has experienced one or both of these. Please do give us a call if you want to talk things through, our support line number is 0808 2080 888.
Oh @Corrina it must have been and be a very scary time for you.
I cannot help you medically, but I was really struck by the amount of medical speak that you have had to pick up over the last few years.
@Alice_BloodCancerUK has given you the Blood Cancer UK support line and we are also here to support you.
Look after yourself and stay safe.
Wow, why a journey you e been on and I’m glad you’ve found the forum to share and ask questions. I hope somebody will be able to share their experiences with you. I hope you are looking after yourself and being kind, it must takes it’s toll?
Hi Corrina I was diagnosed with Acute Myeloid Leukaemia in July 2021. I found out a few weeks later that my Acute Myeloid Leukaemia has a TP53 mutation. The first Chemotherapy I was given (Vyxeos) didn’t really get the results the doctors were hoping for, so I’ve had a more powerful Chemotherapy called FLAG-IDA. I was also told that I would need a Bonemarrow Transplant which is booked for 12th January. I very fortunately have two brothers which are a tissue match for me. Like you I’m hoping that this transplant will be the weapon I need, and I hope that your double cord transplant is yours too , best wishes Nick x
Hi @Corrina and welcome to the forum. I’ve just caught up on this thread. How are you doing at the moment?
Hi Nick. Thanks for responding! I hope you are keeping well despite all that you are facing? I also had Flag-Ida for the first Acute Myeloid Leukaemia which was a NPM1 mutation…it left me in a very bad way…I am still MRD positive which has left me feeling a bit less confident than I wanted to be before the transplant and the Doctors have given me some very depressing stats but of course I try not to focus on the numbers too much…I am really pleased that you are having a transplant and I sincerely wish you all the best. I am going in on Jan 8th to begin the conditioning treatment for mine…stay in touch if you can/want to etc and I really hope your new cells will be your weapon too.
Hi Nicola. I am really emotionally up and down for obvious reasons. I find myself sinking into the ‘box of doom’ mostly thinking about my children and then trying to ‘be positive’…it is pretty exhausting…my will to live is so strong and I never doubted the efficacy of the treatment so I am struggling with all this 3 years on! There is so much written about just being positive or strong etc it can really make a cancer patient feel bad if things don’t go right even if they have maintained optimism throughout and fought really hard etc. anyway I digress…besides that I have a few tests to prepare for the transplant which as far as I know is still on. I go in on Jan 8th to begin the process. I am scared but I know I have to just get on with it and hope for the best! Thanks
Hi @Corrina. I can imagine your emotions are all over the place. I still have really difficult days, sometimes weeks. It really is hard - well I think impossible, to be positive all off the time. That’s why it’s great you can be completely honest on here!
My mind often wanders to my children and that’s what I find the hardest. It reduces me to tears every time. I do get out of those moments in the end but sometimes you just have to go with those feelings and not push them down otherwise I find it all just builds up.
everything goes ahead! Sending lots of love X
Hi @Corrina I think our feelings, thoughts and emotions are meant to isolate unless you accept the lows you cannot appreciate the highs.
I am not surprised you are struggling, anxious and fearful after 3 years, the transplant process is unknown and can be quite a lonely process separated from your children.
Hopefully modern technology will help and we are here for you as is the Blood Cancer UK support line.
Please keep posting and be very kind to yourself
Hi Corrina thank you for your reply and kind words. I’ve been told I’ll be admitted on 5th Jan to start 6 days of chemo before transplant on the 12th. So we’ll be going through this at virtually the same time. I do strangely get some comfort in this fact. I love how positive you are, as I am trying hard to be. I have been experiencing negative emotions recently as I’ve had the stats too, but I don’t see any reason why we can’t be the ones to defy them, especially with how strong and positive we are. I will keep in touch as I go through my journey and sincerely wish you all the best with your transplant journey. Keep strong and positive, Nick
It will be good for you to share experiences. Sometimes it makes us feel less alone.
I’m sending positive thoughts and special wishes to you both. Take care @Yorkshire1962 and @Corrina and when you are able to, or feel ready to please keep us updated on how it’s going. Will be thinking of you both X
Hi @Yorkshire1962 @Corrina , yes, I would imagine you will be transplant buddies, I find hospitals can be a a very lonely place.
Please let us share your experiences too, we will be thinking about both of you. xxxxx
Hi @Yorkshire1962. Sending extra special wishes as you start your treatment. Hope they got you admitted smoothly and everything is on track X
Hi @Corrina. Been thinking about you as your treatment date gets closer. Sending lots of line X
Hi @Nichola75 thank you, and good morning from St James hospital in Leeds. I was admitted last night and I’m all settled in. The room is nice and communication seems good (essential when you’re going to be in for a while). I start 6 days of chemo today and then stem cell transplant on Wed 12th. Sending special thoughts to @Corrina as I know you start your transplant journey on January 8th x
Very best of luck to you @Yorkshire1962 we’ve got everything crossed it all goes as well as it can for you. Please do just give us a shout on the support line if there’s anything we can do to support you or any information we can send you.
Oh @Yorkshire1962 and @Corrina thinking of you both loads, sending you both loving vibes, you are not alone because we are all here to support you both as is the Blood Cancer UK support line, please keep posting when you can.
Really glad you got admitted smoothly and you are comfortable. That’s the most important thing! I hope the next few days ok. Keep us updated when you feel able to. Take care
Hi. I have been thinking of you and glad to hear that you have settled in.
I go in on Monday now.
I hope the chemo isn’t too horrendous for us both!
St Bart’s have banned all visitors to the ward which I think is cruel and will make it even more difficult for me. It is about a 4 hour round trip from our house for my husband to drop off supplies!
Will stay on touch
Good luck x