I have had the worst possible appointment with my consultant today. My recent bone marrow biopsy shows 14% blasts. 20% would indicate AML.
I am starting Azacitadine next week and will continue donor lymphocyte infusions. However, the consultant said that it is very unlikely that I can now be cured. I have officially relapsed after SCT, which I always knew was a possibility.
My husband and I are devastated and feel completely unable to come to terms with this news. Luckily I will be speaking to my psychologist tomorrow but I can't imagine anything helping me to come to terms with this.
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Otterfield
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Oh my goodness. I am so sorry to hear your news. Devastation doesn’t cover it. I cannot begin to understand fully the pain and confusion that must have arisen for both yourself and your husband. Just today my sister in law was given the almost same news she was going to have SCT but now cannot do they’re giving her Azacitidine too. I will really pray hard for you and light a candle. Just know that all the MPN bunch will be doing the same. God bless and good luck. Janice
Dear Jenny, I feel totally crushed for you and your husband, as I am sure other forum members will be too.
We on the forum have shadowed you through this journey of ups and downs, and of course, we all wanted the best outcome for you - I can’t imagine how you are both feeling.
I hope you have good support from your family, psychologist, and healthcare team. We are always here for you too whenever you need a ‘shoulder’.
This is really tough news to learn... You have always been so steadfast & remained so positive throughout your MPN journey...
That inspiring stoicism, is I believe what you must continue to employ... You have long been an exemplar of how our MPN community shares their experience of what it is to live with an MPN, & through the various incarnations of progression and treatment, is what being part of that journey means...
... just as you are continuing to do right now...
In my life, I have always been astounded by the mysteries of nature; how it functions has always seemed a miraculous and awe inspiring event... At times just so magical...
I remain hopeful of witnessing more of such rare jewels of nature...
Jennie, my thoughts are with you & yours as always...
Dear Jennie, , I am truly very sorry to read your post which takes guts to share with us. Nobody who goes through it deserves this outcome and I hope your care team do all they feasibly can to give you as much time as possible to spend with your husband, family and friends. I'm guessing there is no chance of a second attempt which I've known happen. Chris x
Dear Jennie, I have read your post over and over and over again and am absolutely lost for words. Life has certainly dealt you a horribly cruel blow this time. I sincerely hope your team can pull everything out of the bag and turn this around!
We are all thinking of you and praying for a miracle (they DO happen). I can not even begin to imagine how you are feeling or how you cope with such news.
I am sorry to hear this news. You have shared your experience at each stage of your MPN journey. You have informed and enriched this community. Please know that you are not alone as you move forward. You will be in thoughts and prayers. Please feel free to reach out with anytime. I believe you will find many here for you.
Like others, I am thinking of you and sending you all good wishes. Have followed your journey and I'm so sorry to hear about where things are. Hope tomorrow brings you some strength.
I’m a newbie here but just wanted to say how sorry I am to read your devastating news. Thinking of you and your husband. I’ve just read your MPN journey 😔
Otterfield : Clearly, you’ve been through so much only to receive difficult news from your consultant. I wish that I could offer more than words to you and your family, but please know this: it will not be easy but *please don’t give up*
You may not be able to improve or remain in stasis solely with a good attitude - but it can sometimes result in being with your loved ones longer. I wish you fair winds and following seas and include you in my prayers.
Dear Jenny, I am so very sorry for your news. You have been a real champion throughout your entire journey. Prayers for healing and strength to combat AML.
Hi Jennie. I’m so sad to hear of your relapse and hope that you are being looked after well. Sharing your journey as we went through this together has been an absolute privilege and your strength and positivity has been a huge source of inspiration for me. I’m hoping that you are comfortable and that your care team are doing everything possible and that you are able to find the strength to keep fighting. I’m sending you and your family my love and thoughts. Garry
Dear Jenny,You have been so strong all through your mpn journey and transplant......this is devastating for you now. You are a fighter so you will fight on because you are you.
My motto is live one day at a time .....this is all we have.
so very sorry to hear this. A relative newcomer to this forum I join all the others with best wishes and prayers in your continuing MPN journey. Remain hopeful and upbeat, and may your psychologist be of much help too.
I am so sorry to hear this, you have always been such a comfort and ray of light for all of us. I hope that you find comfort sense and logic in all this. Thinking of you and sending love. Penny
I am so so sorry to read your post. What a cruel outcome. As you say, you always knew this was a possibility but you are not the sort of person to accept the worst. I don’t think anyone would put themselves through a transplant without believing in the best outcome
As others have said we have followed your journey and admired your strength and fortitude. I suppose I am in a similar position in knowing there is no cure for me but I have not had my hopes dashed in the same way. I hope your psychologist can give you the support and strength you need. It has helped me to talk to someone else going through the experience of Azacitidine so please know that I will be here for you too - either publicly or through private message.
As we all are I’m sure I am sending love and positive thoughts your way
So much love here for you Otterfield, I hope that you and your husband find some strength from these replies to you. Sending love, peace and wishes to you x
I am so sorry and sad to read your news. You have been through so much and been brave and stoical, it's a cruel blow you have been dealt. Thank you for being brave enough to share with us and if it's any way helpful to you please continue to do so. I hope today's appointment helps.
This is tough news, and so sorry to know you are going through this. I am so glad you reached out and shared this. I know, I want to be here for you. Feeling your sorrow and wishing you hope and happiness. Christy
Your bravery and detailed descriptions of your experience has been inspirational to all of us who have followed your story. I sincerely pray for you to have the best possible outcome that includes peace and feeling good for a long long time.
Hi,Jennie. I am so sorry to hear of this devastating news. Seeking counsel from a psychologist is exactly what you and your husband need right now. You have been so supportive to this community and we are here for you, as well. Please don’t lose hope. There just may be other options to pursue.
Sad news and such a cloud over your head. We have all followed your journey and will continue to do so. Weird things happen and miracles too...I hope you retain the strength that you have displayed throughout. God bless. Janis
I am so, so sorry and incredibly sad to read your news. Thank you for sharing your story with us all. Sending you and your husband my very best wishes. Elizabeth
If I were with you now I would give you a big hug and than sit and cry with you and your husband. ❤️ You have been through so much physically, emotionally and mentally. I am truly sorry for more negativity in your journey. 🌺🌸🌼.
After the release of those impairing emotions I would remind you how incredible, how strong and how important you really are.
You were just kicked back hard and need to regroup. With your strength and the love of your family and friends from around the world may you thrive. Direct ( no demand) this medicine help your body, mind and soul. Truly you are a gift to us all, an incredible supportive friend and role model. You are always in my thoughts and prayers. 🫶🏼🥰
Dear dear Jennie. My thoughts, and obviously those of this special community, are with you and your family. It certainly takes time to process this. Please talk to whoever you can comfortably discuss this with. I can only offer you my most heartfelt thoughts as you move forward.
Words can’t express how sorry I am . You are a hero to me and are source of strength. My heart ❤️ goes out to you and your family! So very sorry to hear about this big setback. You are in my thoughts.
Dear Jennie, To hear the news you have received must indeed be devastating . I can imagine feeling like the wind was knocked out of you! But your strength has served you well. It can continue to do so as you take in this latest “hit”. Breathe. Cry. Do whatever helps you move forward. Know there are many here sending love and encouraging strength to hold you as you walk this path.
Oh, Jennie. I’m very sorry to hear this news. I also appreciate your honesty in sharing the difficulty in receiving it. You are such a steady, authentic, and inspiring member of this on-line community. As the journey continues, I hope you receive from all of us and those around you those same things and more. I wish you strength and healing.
Absolutely gut-wrenching to hear this news. I have no words that others have not already said. I cannot even begin to imagine how this has hit you. You have gone through so much, with optimism and a generous spirit of sharing your experiences with your MPN family. We are all crushed and wish with all our hearts we could do more than just offering our thoughts and prayers.
Devastating news! No amount of words can express my sadness for you and your family. I just hope that you both manage to create some magical memories in the immediate future.
A know not been on here for long but I do follow your post, and am so sorry to read this and am hoping the medication works and be good right now to talk threw with psychologist and your family and I am sending you all my love and hugs. ❤️
Dear Jennie, like so many others I’ve been following your journey and was so sorry to hear this news. You are always so strong and you can see from all these messages how everyone is here for you. Sending love, Jackie
I am so sorry to hear you are going through this. I too have appreciated all along your moving and meaningful posts. I plan to light a candle and say a prayer for you at mass tomorrow. Sending best wishes for healing and peace of mind, and some Holiday cheer as well
I'm so sorry to hear this news from you. You have been such a leading light in this forum. I think, as always, it's down to how you actually feel. I hope the new medication will have some good effects - no cure (who knows?) but there may be some reversal. I hope your psychicatrist is able to give you and your husband some comfort and in time you will get your fight back. Big hugs🤗🤗🤗.
I am so sorry to hear your news, hoping the psychologist has been of help for you today. Thinking of you and your husband, sending hugs and hopeful thoughts to you. XX
Dear Jenny, I’m thinking positive thoughts that they’ll have a medication that will stop any increase in fibrosis/blasts. Sending support & care to you & your husband. Be gentle with yourself until you regain your emotional strength. Katie xx
It is a privilege to share your journey on this forum. Very sorry to hear your shattering news. I hope the azacitidine and donor lymphocytes do their work well for you. Wishing you all the best.
I am very sorry about your current results, anyone would be very upset, and it’s important to let the emotions flow. Once you have done that hopefully you will get the fight back, your consultant says it’s very unlikely you will be cured, well disappointing but that applies to most of us on here, hopefully your condition can be treated though, and one positive is your blasts are not 20 so currently NOT AML. It will be interesting to hear more about what your expert thinks about what’s next treatment etc wise. I know it is very easy for me talk about trying to find the positives but I hope it helps you to try once you are ready. Shock is of course very hard but we know the shock does get less with time and eventually we come to terms with it and eventually it can become the new normal. Sending you best wishes and positive thoughts.
Dear Jennie, I'm so saddened to read this latest update on your health. You've been an inspiration to us all with sharing of your SCT experience. I really hope the donor lymphocytes and azacitadine can help get the blasts under control. You are so brave. Sending lots of love to you and your family. x
I'm so sorry to hear your devastating news. You have been my beacon seeing you go through the horrible SCT process and hopefully come out the other side. Don't feel obliged to reply to these questions:-
Have the blasts only been present post SCT or had they started to appear before? Is a 2nd sct out of the question?
I cannot add more than others have already said here but my thoughts are with you and your family. I read this whilst sitting on C7 ward at Southampton, a place you know well so rather emotional experience. I am sure the Southampton team will be doing their very best to come up with a treatment that gives you the best possible chances going forward. You have been and continue to be such an inspiration for me. Lots of love to you.
This is such hard news to hear and I'm so sorry that you had to hear it. Especially after all you have been through. I think of you often after reading this. I hope you take strength in the support of this group and any other sources you can pull from.
This is a terrible shock and we feel it also as we all do, who follow your news. I am so sorry and understand how numbed you must feel. Please do anything necessary to get some sleep. So important. I’m praying now and many will be praying for you, you’re husband and family and for your situation at my Bible study today at 10:00. Tomorrow you’ll be able to think clearer.
It’s good to speak with a psychologist. I send my love. Anag
just returned from a circle of prayer. May you find peace and clarity in your mind, heart and soul to face the next days and weeks. May solutions come to you. May the therapy help you. May love and closeness abound in your home and fear find no place. 🙏
Dear Jenny, I’ve been thinking about your situation & wanted to encourage you to try something if you’re not already doing it: have the team at Guys evaluate you because they’ll know the newest and best medications that might help you. Please keep us informed on how you’re doing if you’re willing. Katie
Hi Jennie, so sorry to hear your news. I’ve been following your journey before & after your transplant as I had a transplant in August, so I appreciated your honesty in what you went through. My thoughts are with you & your husband, sending best wishes.
I'm a very infrequent poster, but do follow the journeys of others, including yourself, fairly regularly. I'm so very sorry to hear about the difficult news you've received. I will be thinking of you and your family as you gather strength and hope to navigate the days ahead. Speaking to a psychologist is an excellent decision. Take care.
Here's a hopeful post I read on another forum from someone in the USA that was in a similar situation:
"I was Dx ET 2003, Dx PV 2009, Dx MF 2013, and Dx AML 2019. This last Dx led my doctor — at my first appointment with him — to tell me I had weeks to months to live without treatment. I was 72 yo and I started Vyxeos immediately to put the AML in at least temporary remission. Four months later I had my SCT at age 73! I am now T+4 years, feeling great, living an active life, and taking no prescription drugs since T+13 months!"
Just catching up with emails. I am dreadfully sorry to hear this news. You are such an inspiration and I have followed your journey from your decision making to go through with the SCT and have admired your courage at each challenge. Don't give up hope Jennie. My thoughts are with you and your husband.
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