Thanks to everyone who responded to my previous post on Progression. Since then I have had my BMB and the worst has been confirmed. Not only have I progressed to Post PV-MF, 1+ to 2+ in some places, but I am in accelerated blast phase at 10%. I have had irradiated blood transfusion last week as my hbg was at 8.2 . Therefore, I am on the path to a SCT and will start Jakafi and 5 consecutive days a month of IV Decitabine with 3 weeks off. After 2 cycles, I will have another BMB to see if the chemo is knocking down the blasts. Thus far, I have mild bone pain & muscle soreness at times, but still able to do my yoga exercises, eating well with minimal weight loss so far, climbing stairs throughout the day with no SOB. My spleen does put slight pressure under my left ribs after eating, but nothing significant at this time. No fevers, night sweats, etc.
This is a hard pill to swallow since I was doing so well for quite a long time, but medication does play a role, I am sure, & I wish I had switched to Besremi or Jakafi much earlier, but I cannot go back now. I am, however, having my sister with PV, diagnosed 2 months prior to me, to contact an MPN specialist & to get off HU & start an interferon to hopefully prevent her from possibly following my path someday. I am doing what I can to stay as healthy as possible; I will not be participating in the Christmas celebrations with my large family to prevent getting sick before starting treatment next week.
I will also start anti-virals, antifungals, antibiotics once starting IV chemo, bi-weekly CBC’s/CMP’s, so my body will be going through a lot. So many changes so quickly & my life is forever changed, but I am in for the fight, as hard as it may be; my husband & my family as big support surrounding me. I pray that I will be granted the strength & courage to fight this disease & the doctors the knowledge to make the right decisions on my care throughout this process.
I wish you all a wonderful holiday season & a blessed, healthy New Year ahead. I will keep you posted on this journey as strength will allow.
Donna
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I’m sorry to hear that you have progressed to myelofibrosis. It sounds like you have a challenging journey ahead, but you seem poised to face it with hope and positivity. I will be thinking of you. Please keep us updated about your progress. Big hug!
Thank you Minify. A positive attitude is a must to get you through this really challenging journey ahead. Thank you for your hugs & support; that also helps greatly
I am sorry about your MPN progression but so glad you have the SCT option. Nothing easy about this but your attitude and commitment are strong to get you through it. With the added help of your extended support team, the coming new year of 2025 will be your year! A virtual hug comes your way from Michigan. Go Girl!
Thank you Mishie14. Although I know this is going to be the fight of my life; literally, & I am a fighter, I know that a SCT is my only curative option, even though a lot could go awry on the way. My new mantra is taking this one day at a time. Thanks for your support
Thank you Steve. I am so happy that you have shown great success so far with your Besremi treatment & your VAF has been further reduced. Best to you & your family & continued success & good health in the New Year.
I’m so sorry about your progression to MF. I remember hearing the same news in 2019. It was awful. I was told in 2023 it was time to talk about transplant. I’ve been procrastinating and consulting with different doctors and finally decided to move ahead. Our plans are to go to Boston in the spring and do it at Dana Farber. It’s a very scary prospect but I have a good support system and I’m ready.
It is a bit scary at times, as I know this is a long marathon & not a sprint, with possible difficulties along the way, but a path to the closest thing to curative as many before us that have taken that journey. I will have mine performed at MSKCC in NYC & my specialist mentioned far better success rates going to the large cancer centers like Dana Farber than having it performed in a local hospital. I wish you the best of luck & improving health on your journey. We must stay positive & do what we must to fight this disease.
Thank you EPGuy. Despite it being a difficult journey to SCT & beyond, it is good that the option is there for a potential cure if everything goes well.
Appreciate your update to the group but so sorry to hear your news. It always seems so sudden and unexpected when things change. Fortunately you are a candidate for SCT, which while scary offers the opportunity for a cure. Sending you very best wishes for a smooth and successful path forward. You have a great attitude which is so important. Good Luck!
Sorry to hear about the progression. Your attitude and fighting spirit are great and you seem to have a very good support system - they will all serve you well in the days, weeks, months to come.
May you have a peaceful holiday season and may the new year bring health, happiness and wisdom.
Thank you Solyesh. I believe that a positive attitude is the only way to get through each hurdle one must go through with this disease. I appreciate the words of encouragement.
All the best to you for a wonderful holiday & a healthy, blessed New Year.
it’s never great hearing of fellow MPN’ers progressing, but I’m always reassured by the next steps and more so the confidence it in stills in people. I have the same mantra, take each day as it comes, some will inevitably be tougher than others and that ok for the next day may be a little easier. Remain as positive as you can and lean on those around you. Wishing you all the best with your treatments Donna, keep us posted, we’ll be thinking of you and I hope you have a wonderful Christmas xx
what a shock and horrible timing just before Christmas it’s everyone’s worst nightmare the progression
I’m 9 years 6 months on from splenectomy I have 50/50 PV and ET I’m on 1500 mg hydroxycarbamide daily I dread progression but you sound extremely strong in mind and body keep that faith and stay positive and always believe
God bless you wishing you a successful treatment outcome
Yes, the Christmas holiday is an unfortunate time to receive this news, but it also gives me hope, love & support from all of you in this community as well as all of my family & friends. Thank you for your support- I plan to push through each hurdle I may face along the way. All the best to you for a wonderful holiday season
Hi DonnaOne of my favourite lines in a song is from Sound of Music. 'I have confidence in confidence' and you also have the arsenal of medical treatments. I am sending positive energies for the SCT process.
So sorry to hear about this progression for you but your positivity and courage is very inspiring and i really hope things go ok for you next year. Huge hugs xx
Dear Donna, you are facing what we all fear. I am very sorry for the worry you must have and for the challenge ahead, but I salute the warrior in you and wish you all the very best. You are wise and strong! A big hug
Thank you for your encouraging words. I had my moments of tears knowing it was a long road ahead, but then I got my fight on as I still have a lot of life to live.
So sorry to read of your progression, to MF, but it's great that you're a candidate for SCT. Wishing you strength and success as you prepare for treatment and joy and peace over Christmas 🎄 🕯🙏
I’m so sorry to hear your news: I’ve no experience of going through a stem cell transplant myself, but others in this group have, and can offer shared experience.
Thank you- I do hope that others who have gone through a SCT will provide us all with their experiences. That truly helps those of us who must follow that path to possibly reach wellness again. Happy Holidays
Donna, thank you so much for posting and informing us. This is not an easy diagnosis you have given us so much to think about regarding possible treatments and decisions that perhaps should have been made along the way for better outcomes. This helps so many of us understand our own quest better.
I commend your proactiveness and strength which also comes from a strong family unit and probably great friends with which you are blessed! You are very right to avoid the Christmas celebrations in order not to get sick, as this is a crucial time and you must remain healthy. As you are a woman of prayer, you will be celebrating Christmas, with our Lord Jesus. 🙏🙂 you will be in my prayers, Donna! Have a beautiful Christmas and New Year! Hugs from Vienna, Austria
Thank you so much for your encouraging words. I do hope my journey may help others in advocating & being their own health administrator. We all know our own bodies the best. I am truly blessed with a close knit family & many great friends that provide me with prayers, support & offers of help in many ways. I very much believe in the power of prayer. Best wishes to you during Christmas & throughout the New Year.
Thank you! I’m getting myself ready to sing and play guitar at the beautiful Catholic church in my neighbourhood this morning (I am Greek Orthodox). I also cantor there sometimes. After ending my Opera career (family obligations/ aging parents) I hadn’t sung in 12 years. After praying for a way to start singing again, an old friend asked me if I could sing a special mass there. That was 4 years ago. I hadn’t played guitar in more than 20 years and that got me back to performing. I think God for opening this path which has so enriched my life. The priest lets me sing whatever I want! 😃 (As long as I don’t scare the congregation away) 😂
Sorry to read your news and that Christmas won’t be with your wider family; the love you have for them is clear. Wishing you strength and success in your treatment next steps.
Thank you for your support. My large family has been providing me with so much love & prayers each & every day & that will get me through the holidays & beyond. Our three sons will be with us for Christmas, with masks as needed & I feel so blessed to enjoy this special holiday with them as we have done every year of their lives. Their love will provide me the strength I need to push through the next part of my MPN journey. Merry Christmas!
Thank you- I have total confidence in my MPN specialist. I feel truly blessed from all of the support I have received from this wonderful family of MPN people from around the globe
Hi Donna. I am so sorry for your news and will be thinking of you and hoping that all goes well for you. Have a good Christmas and a healthy new year. Mel x
Thank you so much for your positive thoughts. I am truly amazed & it has brought tears of happiness to my eyes with all of the messages of love, positivity & prayers that I have received today
Thank you Mazcd. My heart is warmed by all of the messages of love & support I have received by this wonderful group of people who are all going through their own difficulties with their MPN disease, but are always willing to help others
Mark- thank you for your words of support. It puts a smile on my face if I am able help others in any way with my own particular MPN journey. I truly feel the love that has been showered my way by this support group. It means more than I can put into words. (And I can talk a lot!) All the best to you & this group of caring people for a wonderful holiday season
Sorry to hear this news. I will be thinking of you and sending positive vibes your way. Do you live in NYC? My doc feels it’s likely I’ve progressed as well. Will need bmb to confirm. I’m already on Jakafi. Please keep us updated. We are all behind you!
Thank you for the positive vibes. I do not live in NYC, but in upstate NY in the Southern Adirondacks. It will be a major change to have to stay in the city post transplant, but my husband & I will figure it out, as my best chance of any curative treatment is best achieved in a large cancer center with the MPN specialist I feel will do their best to get me through this next step in my MPN journey. Please move forward to BMB to see what stage you are at in order to make the most informed decisions on your health. Good luck as you move forward and best wishes for a healthy New Year ahead
I can only admire your strength and resolve for getting through the turn of events. Rest assured that you will not be alone this Christmas and next year.To all and everyone, Peace 🫶
I appreciate your kind words. I will certainly not feel alone with the love of my family, this MPN family & my faith that our loving Lord will get me through this. Peace be with us all during this blessed holiday and throughout the coming year.
Donna, Thoughts and prayers for you. It sounds like you are following best advice and doing your part. Sorry you are having this experience. Your Team is working hard for you it sounds. You have a community here, concerned and caring for you in spirit.
In the hope that this doesn't give offence may i say that myself anf my family prayed for you when I saw your post and, if it is O.K. , will continue to do so. You are are a brave woman and a fine example to all of us.
I absolutely take no offense and I feel so loved & blessed that there is this amazing community of people who have never met me, but have taken the time to send me so many words of encouragement, love, and prayers. I believe that HE alone will give me strength, courage and provide my doctors & nurses the knowledge to provide me with the best care. I appreciate all of your prayers now & moving forward. Wishing you all a Merry Christmas & a year full of many blessings
Thank you Suenami. I appreciate all the words of encouragement I have received. My labs were performed today to see if I required another transfusion and all of my blood levels had improved with my previous transfusion so that was a nice early Christmas gift. I will take any small improvements I can get! Merry Christmas to all. I will do my best to keep this community informed as I proceed ahead with treatments
Thank you for your beautiful words. I believe that God will be by my side throughout this journey. It is what provides me strength and the determination to push forward. Merry Christmas to everyone & my wish is that we all will have improving health in the New Year
Thank you for your positive thoughts Penny-10. They all add up. Thank you to everyone in this MPN community. My holiday has improved by all the positivity, love & prayers I have received from each & everyone of you
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Update after BMB
PV progression?
Started Besremi
