I’ve had pv for 12 years. 3 months ago it progressed to acute myeloid leukaemia with a statistical prognosis of 6 months. As I am 73, I decided not to have chemotherapy. So far, physically I am ok, and the leukaemia is gradually impacting red cell and platelet counts, but I know this can speed up significantly at any time. I am fortunate in having a good supportive haematology team who have referred me on to psychology and my local hospice team is good too. Despite this support I admit to being terrified of what lies ahead. For many years I have been grateful to be part of the mpn voice community with all the information and support it provides but I’m now in a different place. Statistically, I’m very unlucky, but facing aml and the process of dying is harder than anything I’ve encountered with pv. Make the most of the time you have living with just a mpn, none of us know what lies ahead.
Progression to aml: I’ve had pv for 12 years.... - MPN Voice
Progression to aml
I am so very sorry to hear this incredibly painful news for you and your loved ones. I hope we in this group will be able to support you in the months ahead.Thank you for the reminder about making the most of our lives with an MPN.
You are in my thoughts and prayers, Jennie
That must have been a very difficult post to write and I greatly admire your bravery in facing up to such difficult news. It is good you have excellent professional support, but I think we would all truly empathise with your personal feelings in dealing with this. I can only echo Jennie's response to you. Diana
Thank you for your heartfelt and courageous post. It hurts to read it and everyone here must be feeling for you. For me you have also just whacked so much else that really isn’t important into another perspective. Xx
I sincerely hope you find some comfort with the support you getI too found it hurt to read your post . It must have took a lot of courage to write it . Bless you
Your post really resonated with me and my heart goes out to you. I have post Et Mf and my biggest fear now is progression to AML, since the last few months I’ve been feeling even more fatigue than usual, some nausea, and loss of appetite. I’m having another biopsy soon to see what is going on.
Thank you for sharing your story. And, by the way, doctors don’t always get it right when they give estimates. You may have longer than you think.
We are all still here for you.
Sending hugs,
Cindy
I am sorry for the diagnosis you have received and feel for all that you are dealing with, my thoughts and care are with you - Jill
Thank you so much for your post, which I found to be incredibly moving. I am so sorry to hear that things have progressed for you and that you are now having to confront and deal with the implications of AML. The honesty and courage you demonstrated in your post was astonishing and I'm sure these qualities will help you with what lies ahead.
It sounds like you have some good support in place, and have found MPN Voice to be helpful in the past, maybe you can reach out and allow us to come along with you through this next phase, let us know how you are doing? (Only if it would be something you would find helpful of course).
Thank you for reminding me to make the most of my time, life truly is a gift.
Thinking of you and sending warm wishes,
Lou xx
dear Far_2009, I am so very sorry to hear your news. You have been incredibly brave sharing this with us, I found it very moving to read, and want to send you much love and to tell you that we are all here for you. With very best wishes, Maz x x x
There's nothing I can say that hasn't already been beautifully expressed by others, but I wanted to thank you for your courageous post.
Thank you for sharing this stage of your journey with us. We all wish that this was not the path you had to walk. It sounds like you have made a reasoned decision about how to proceed in dealing with the AML. Please know that we support you and your loved ones and will be there as we can on the forum. You will be in many thoughts and prayers.
So very sorry to hear this, my thoughts are with you and your family. You have a good support network around you, lets hope they have this all wrong.Jean
Hello FAR_2009 , Gee I'm very sorry to read of your transition to AML. . Undoubtedly one of the hardest and bravest posts I've read here and my heart goes out to you. And believe me when I say I totally get the way you describe you're feeling. There are no upsides with this but hopefully you will have time to give yourself some peace of mind once your affairs are in order. I have taken solace in this myself not knowing how things would pan out for me a few years back.
If it's any consolation I think you're right to refuse chemo because it will skew the time you have, however i just feel i need to ask if there's no chance of a Stem Cell even at this stage.
Also it takes a big heart and guts to give fellow MPNers the benefit of your wisdom in adversity as you've done so a big Thank You for that. I hope many follow your sound advice.
Regards - Chris
So sorry to read your brave post and you are right we must appreciate every day sending hugs Poppy
I'm sorry to hear what you are going through, and I echo the caring comments others have written. I hope that you lean on all of your support network and that you find peace. Your grateful attitude can be a major source of comfort as well. I hope you keep that going strong.
Our philosophy about the end of life can be most helpful. For me, I believe that I will be in Heaven or I should say some other "plane of existence." In my 72 years I have heard many stories of apparently impossible "communication" with us humans, and those lead me to believe that what we see in our world is not all there is.
Ohh dear sorry to hear about your progression. Your courage has moved all of us . Thank you for reminding us life is present . I wish your present is full of life. Keep smiling is the way to fight. A big hug to you.
I’m so sorry to hear this news. Sending love x x
I can’t imagine how difficult it was to write this post, but would like to thank you for doing so, there’s little more I can say that others haven’t written so much more eloquently than I could, but please know that we’re all here thinking of you and all willing to support you in anyway we can. Lots of love to you and your family xxx
I’m very sorry to hear this. I hope your circle of support helps you find the strength and peace you need.
I’m so very sorry to hear of this difficult path you tread. I hope you have gained some strength from the supportive response to your post.
Thoughts are with you and your family.
Dear FAR_2009I am so sorry to read your news, it must have been a shock for you and all consuming of your thoughts. You have written it so well, without complaint or any trace of bitterness. For 24 hours I have been try to put myself in your place and imagine how it must feel, it makes my heart very heavy. So I wish for you happy times doing things you love but I also wish you lots of support so you may talk or not as much as you you want. Your last sentence to all of us is such good advice. There are lots of us here who will be thinking of you.
Very sorry to learn this - hoping the statisticals are wrong - can I do anything to help? Thinking of you and sending lots of love and hugs.
Thank you for your courage in posting about your progression to AML, it is so valuable for all of us. I hope that you get the support you need and well done for being assertive in asking for help. You will be in our hearts. Sending love Tessa
This was so sad to digest my heart goes out to you It puts things into perspective for people living there lives with MPNs to try and live there lives and enjoy each and every day
Try and stay as positive and strong minded as possible God bless you
I think we are all terrified! We just cover up in different ways using a mask of rationality, belief, practicality plus. How we cope shows amazing courage.
Lots f love.
Oh my goodness how amazingly brave of you to write with such clarity and honesty on what is a very difficult realisation of this progression. I can only very sincerely and humbly echo the beautiful words and comments of all the others who have replied here and so truly expressed how we all feel for you and your family. I pray you will continue to find all the love and support here too through this group and through your MPN team. With love and prayers.
My heart goes out to you Far_2009, thank you for being so brave in posting your progression to AML. It must have been very difficult to write and we will all be sending lots of love your way.
Anna
Sad news to all of us. Praying for you and your family.
Sending you lots of love and hugs and hope you have love, caring and support from your family.It's a brave thing that you have shared with us and probably us with MF fear for ourselves....as I do.
Stay strong... thinking of you Lynn.
Thank you for having the strength and courage to tell us of your most awful news. Your advice to be grateful we are still living with an MPN puts it into perspective. I wish you strength and courage on your journey.
Sorry to hear this , you sound like one brave person my heart is breaking reading your post 😔
Sending love and hugs for what must have been a difficult thing for you to write. It takes a hell of a lot of courage to make the decision you have come to in refusing the chemotheraphy and in doing so I pray you have better quality of life in that time. I'm glad you have a supportive Haematology team and hospice your in touch nearby. I also hope the same extends to close family and friends. Sending love, Tina.xx❤
So very sorry to read your heartbreaking post - you are so brave to post, and I hope you continue to receive all the strength and support from your team. Anne-Marie x
So sorry you had to write this post but thank you for the courage and selflessness it took to do it. Thank you also for the reminder to squeeze as much as we can out of life where we are. I wish you and your family strength, courage and peace on your journey.
Sending you love and Blessings 🙏🏽
So sorry to hear your news. I echo what others have said so eloquently about your courage in posting. I admire your decision not to have chemotherapy. I hope we all can give you support if and when you want it. Sending hugs Sally x
This was a very tough post to read so it must have been so difficult for you. Thank you for the reminder. I can only send you my heartfelt good wishes for the months ahead. I will think of you regularly. Use all the support you have available. Xx
Thinking of you and thank you for sharing 💕💕
The clarity with which you write at a time of confusing and frightening transition is astounding. I’m very sorry you are at this most difficult of crossroads. Please let us know how you are getting on. If you need to cry and/or vent or share concerns, please know we will all be holding you in the biggest of virtual hugs.
You are facing what we all fear and my heart goes out to you. Thank you for reminding us to make the most of what we have, in the present ; it is so easy to forget when all is going well . We are here for you, an attentive and caring audience if nothing else. Let me send you a big virtual hug ❤️
Oh my. So so sorry. I admire you for sharing. Thank you.
Most sincerely, Linda the cookie baker
Hi,So sorry to hear about your news.
My husband was told that Stem Cells would be his last resort if his platelets were out of control.
Is this an option for you?
He goes to Dana Farber in Boston. His doctor is Chief of Leukemia and Blood Disorders.
Good luck and know that we are all in this together.
My prayers are with you.
Donna🙏😊
You’ve made an extremely heavy decision, and I hope you and your loved ones are at peace with it. My sister relapsed after receiving chemotherapy and a SCT to treat her leukemia when she was 37yo. She subsequently refused all treatment outside of palliative care, and chose quality of life over quantity after experiencing adverse side effects from repeated rounds of chemotherapy. She lived longer than the statistical prognosis, and I am deeply grateful that the remaining time she had on earth were shared in places she loved and not in the hospital.
Praying for strength and solace, and for love to always surround you.
I am 72 and just transitioned to AML in August. I chose to do the chemo. I have had good and bad days. Most of the side effects could be the AML or the chemo. This is such a personal journey, no one decision is the right path. God Bless you Far
Thank you for sharing the news of your progression to AML and some of your thoughts and emotions surrounding this transition. You seem so very courageous and clear about your path forward with the support you have decided upon. You sound like a person who will continue to live your best life in this journey moment by moment. I thank you for the reminder for us to do the same. God bless you.
Like everyone here my heart goes out to you. I admire the choices you have made in that you refuse chemo and accept Hospice, quality over quantity, I think these decisions will be mine if I end up progressing down the same road. It must be a very lonely experience receiving such a diagnosis despite the amazing support you have around you. Most of the time I forget I have ET until I read something like this and I get jolted back to reality but I will soak up your words of wisdom and live life to the full. Everyone here will be humbled by your honest account, God bless.
Truly very sorry to hear this news. I really can't add anything to all the eloquent posts you have received. I hope I can be as brave as you are when the time comes. We will all be thinking of you and praying for you, already have. Thank you for sharing.
So sorry to this. Sending you love x
Bless you x I'm so sorry to hear you've had this news 😢
Sending my hugs and thoughts to you xx
So so sorry to read about what you are going through. Thank you for your courage in posting this and your reminder to enjoy each day. I hope you have the support you need to deal with such a prognosis and my thoughts and prayers are with you.
Such awful news to hear FAR. Very brave to share with us and courageous to make such a difficult choice.
Can you share what changes you experienced for the progression to occur? Changes in symptoms over a given timespan? Changes in blood numbers? Etc? Is it that your blood counts just arent any longer responding to the treatment youve been on?
Hi very sad to read your post . Sending you lots of love xxx
So sorry and sad to read your moving post.Thinking of you and sending you love. We are all here for you.
So sorry to hear your news. Thank you for thinking of others and making your brave post; and for reminding us to make the most of every day. Best wishes.
How incredibly brave for your post my heart goes out to you and your family ❤️thoughts and care with you.
Real sad news. Praying for you and your family. God Bless you.
Sorry to hear your sad news. Very wise words from you telling us to make the most of our time. I hope you can manage to stay positive. Sending hugs your way. Shirley
Many thanks for your post. You are so brave and thoughtful. I’m sure you will take comfort knowing that you have ensured that at least one person has taken your advise- ME! Thank you. May you get all the support you require and more. Xxxx
Hello FAR-2009. Thank you for a very brave and honest post. I am 74 and my CMML progressed to AML two years ago so well understand the shock. I tried the AML18 trial, which was interrupted by a fungal chest infection but put me in remission for 12 months. After the AML returned I was put on Gilteritinib (now over 12 months) and this has worked well to date (no transfusions for 10 months) and now planning for a SCT. Perhaps worth asking your team about Gilteritinib (an oral medication) as, from trials, it can offer a good extended QoL.
Thankyou so much for posting. Everyone has said what I am thinking but I want you to know how your thoughts and strength resonates so deeply with me . I wish you support and peace and little surprises of happiness and contentment popping up from time to time.
My prayers are with you 🙏🏼 I am also 73 and know I will eventually get the same diagnosis as you have. You sound like you have a good support team around you and that’s so important. Yes, live for today and appreciate every moment. Bless you xxx
Sorry to here this. You are brave to be able to write this but remember that we are all here for you to chat or support you in anyway we canTake Care 💖
So sad to hear your news and read your brave heartfelt message. I wish you all the best and share the thoughts of all messages you've received. X
Hi...
This is my first post here (Mostly I have been in read only mode here)
There is this clinical trail going on and I don't know if it will be helpful to you or not or if it will be accessible to you or not. Here is the link pacylex.com/#Pipeline
One of the areas they are testing is AML
Hoping it can help you...
Thank you for sharing the intimate and frightening news of your AML development, FAR_2009 . Your courage in doing so is one of the most uplifting and generous posts on MPNs I’ve ever read, despite opening my eyes for the first time to the brutal reality of what the future might hold. We all live with MPNs but we rarely consider with any frankness what comes next. Openness about the subject, sharing your knowledge and experience, helps us to understand and be better prepared than by sweeping the difficult subject under a carpet of fear. The key is your advice about living well with our MPNs; what you’ve shared is helping me do that. Since I first read your post, I’ve often thought of your courage and advice, always with gratitude.
Thank you and best wishes.
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