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With Myelofibrosis I have good days and bad days - is this normal?
I am 82 years old and have myelofibrosis. Some days I feel okay, but on other days I am wiped out, lethargic, low energy, wobbly, and generally feel unstable and weak. So far, the good days still outnumber the bad days. Do other people with myelofibrosis experience these swings in how they feel?
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Dear @geo84
Yes - for me it seems every afternoon I need a nap and I typically go to bed between 8 pm and 9 pm. According to my research hemoglobin is lower in the afternoon/evening. This lower hemoglobin causes fatigue. Best wishes
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2 ReactionsMy experience is Yes. Over time, as it progressed I had fewer good days.
I was put on Vonjo and over time I got my life back, for the most part and felt dramatically better.
You might discuss this with your Oncologist. It may be time to make a change to your medication?
I'm sorry you are going through this.
Wish you better days ahead.
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1 ReactionI am 75 and was diagnosed with Myelofibrosis Feb of this year: so far, the physical energy swings have not been extreme, but the mental adjustment has been taking some time. I wish you the blessing of improvement in your energy levels. How long has it been since you were diagnosed with MF?
Thanks for your response.
I was diagnosed in March of 2021 with ET, and in May of 2025, with a new biopsy, I was diagnosed with Myelofibrosis. Thus far, the condition is manageable with Hydroxyurea. The periodic energy swings concern me.
Interesting that hemoglobin would drop in the afternoon - I, too, feel tired frequently and need more naps than I ever have. Thanks for your comment.
@carolgk I will do some research into Vonjo - great to hear it is working for you. At present, hydroxyurea seems to be working, but other drugs are probably not far down the path. I appreciate your comment - all the best to you
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1 ReactionTo geo84:
You could be describing my experience, too, with the low energy, regular nap time, and the unsteadiness, especially at the end of the day.
I’m 84, diagnosed with mf two years ago, then Waldenstroms macrobulinimea (?) a year ago. I’ve done well with Hydrea and a round of Rituxin twice a year but am increasingly exhausted by the end of the day.
I’m thankful I can do most of the things I’ve always enjoyed and try to stay positive. It’s good to know I’m not alone in this. Thanks for posting.
@dunewalker Thanks for your comment and observation. I too am thankful I can still do most things. Best of luck going forward. There is much to learn and a lot to deal with going forward. Thanks again - Geo
@geo84, hola buen día. Me gustaría saber por que te realizaste una nueva biopsia? Tenías algún otro síntoma?
Yo soy diagnosticada con TE hace 12 años y tomo hidroxiurea, a fines del año pasado me mandaron realizar una biopsia pero aún no he tenido el valor de hacérmela.
Me serviría mucho tu experiencia. Abrazo
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Hola. Me sometí a la biopsia debido a cambios en los recuentos sanguíneos y a un aumento del cansancio. Además, habían pasado varios años desde la última biopsia y quería saber qué estaba cambiando. Para mí, la biopsia no supuso ningún problema. Esta segunda intervención se realizó en un hospital y utilizaron una resonancia magnética para asegurarse de tomar la muestra en el lugar correcto. En mi opinión, si te recomiendan hacértela, yo lo haría; podría haber mutaciones genéticas de las que no estás al tanto. Para mí fue un procedimiento sencillo y fácil. Mucha suerte.