Progression Confirmed!

[ADKlover61]

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

[Minify]

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!

[ADKlover61 in reply to Minify]

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

Donna

[Mishie14]

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!

[ADKlover61 in reply to Mishie14]

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

[hunter5582]

Sorry to hear that the progression was confirmed.

Wishing you peace, and jot in the coming year and success with your new treatment plan.

[ADKlover61 in reply to hunter5582]

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.

[Cja1956]

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.

[ADKlover61 in reply to Cja1956]

Hi Cja1956,

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.

Donna

[Cja1956 in reply to ADKlover61]

I’m going to send you a private chat.

[EPguy]

Knowing that options are and will be available keeps hope to the journey. I relate well. Wishing you good successes.

[C_Anne_Orange]

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!