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My AML has been in remission for a year: Will it relapse?
Blood Cancers & Disorders | Last Active: Oct 11 12:53pm | Replies (23)Comment receiving replies
INQOVI update:
Had my in person appointment with my Hem/Onc on 8/12. Started my 2nd round of INQOVI on 8/17 2 pills for 2 days. While my numbers haven’t gotten into the normal range yet (INQUOVI materials state it could take up to 4 rounds) my Hem/Onc is happy that my numbers are “stable” and he may reduce the INQOVI dosage down to 1 pill every 42 days! Let me state here my last MRD blood draw didn’t find any evidence of FLT3 or NPM1 Mutations(AML). INQOVI is being used to treat the SF3B1 mutation (MDS) found in my BMB in December.…He also reduced the frequency of my blood draws from every week to every 2 weeks! All of this WITHOUT the recommended Bone Marrow Transplant at the time of my diagnosis in April 2024 at the age of 74. I am so incredibly blessed and thankful for the researchers who continue to work hard on behalf of all of us who are living with a blood cancer diagnosis…and especially my care team who are on top of all the new medications coming out and able to apply them appropriately for my AML/MDS journey!
For me daily prayers, giving gratitude and thanks for my journey are healing me along side my care team…I wish the same for everyone who is facing a diagnosis that seems insurmountable from time to time.
I have set my goal to have my Hem/Onc announce at my 5 year diagnosis (4/29) anniversary I am CURED of AML/MDS. When that happens I will post it here to celebrate as this forum has been instrumental in helping me all along the way!
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@sonieaml This is such amazing news that your FLT3 and NPM1 mutations have been eradicated. When I had my transplant, two of my doctors told me that if there no signs of disease for 22 months post transplant then, statistically, the odds of relapse occurring dropped dramatically and by 5 years you’re home free.
So it stands to reason, not only with a bone marrow transplant but with your chemo treatments, that if your FLT3 and NPM1 mutations haven’t resurfaced the likelihood is very low! That is cause for ‘Cell’ebration right there!
As little as 7 years ago, when I had my AML journey, that wasn’t a possibility without the transplant. I had both of those mutations plus an another. I was informed that I really had no other option for longevity without the BMT. The FLT3 mutation, particularly, can be a challenge to treat because it can elude chemo, lying dormant for a while then reemerging later. That’s why monthly chemo is done, to do a continual monthly sweep for any rogue cells that pop up. From my understanding that period of potential relapse for FLT3 usually shows up between 6-12 months. So the fact that you have gone two years now with clean MRDs is joyous! That gives so much hope to AML patients!
I wish you well with the Inqovi treatments. I keep my ear to the grapevine on AML/MDS and all blood cancer treatments. This sounds like another real game changer. So again, thank you for sharing these updates with us! This should give @bettersleep68 a morale boost! ☺️ We simply have to live every day to the fullest and never give up hope for a bright future! Sending you a huge hug!