My AML has been in remission for a year: Will it relapse?

@bettersleep68, this is great news that you have been in remission for a year. I understand that you are concerned about a relapse. That's only natural. But, as they say, don't borrow from tomorrow's worries. Focus on today.

Acute myeloid leukemia (AML) does not always relapse. Your team will monitor you closely. If AML comes back later, there are treatment options available.

If you find your thoughts consumed by worry for a relapse and not being able to enjoy life, you might consider speaking with someone who works with cancer patients like an oncology social worker. Oncology social work an often overlooked service offered at large cancer centers. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

@colleenyoung you have written what I asked of my Onc/Hem when I reached a year! His reply was similar to what @loribmt wrote. He said we have several new drugs that can address relapse should that occur. I have since listened to a few webcasts about AML that discussed the drugs and my mind is at ease. I reached 2 years in remission in April and am living my best life! I am monitored and get an MRD blood test every 4 months. My Dec BMB found the SF3B1 mutation (MDS). I started on INQOVI in June and am back to weekly blood draws. It maybe December before we learn if the drug has helped my consistently low numbers get into the normal range. I do expect I will be monitored the rest of my life according to the AML webcasts I have viewed. My prayer is to die of old age (same goal my Hem/Onc has for me) while being monitored for AML/MDS!
Prayers to you and all who are on this cancer/discovery journey.

Correction I credited @loribmt and should have been @colleenyoung for her response. Apologies to all!

Inqovi. Would like to try and stop vidaza injections...anyone having good results with this drug

Hi @bettersleep68. Inqovi, in combination with Venectoclax, was recently approved for newly diagnosied AML patients 75 and older, but also for any older adults where high intensity chemo isn’t an option. The combo has been showing promise for treating AML. It would certainly be nice to have an all-oral treatment option.

Here is a link to one of many articles online regarding Inqovi.
-Oncologynurseadvisor.com
https://www.oncologynurseadvisor.com/news/fda-approves-inqovi-venetoclax-acute-myeloid-leukemia/
I found a number of discussion in the group with members taking or inquiring about Inqovi. Feel free to ask questions!
Here’s the link:
https://connect.mayoclinic.org/search/
Have you talked to your doctor about the possibility of trying Inqovi?

Do you always relapse after being in remission with aml?

Hi @bettersleep68 No, people don’t always have a relapse after treatment for AML. In fact, with medications for older patients with AML, such as Vidaza/Venetoclax and Inqovi and targeted therapies for specific mutations, people are staying in remission.

@sonieaml has been in remission for over 2 years where she shared this news in this comment:
https://connect.mayoclinic.org/comment/1636538/
You’ve been in remission for a year already and that is such encouraging news. I know when we have AML it’s challenging not to feel there’s a specter over our shoulders. But we also can’t live in fear! It’s so important to live each day to the fullest and if there is a change in health, the we deal with it at that time! But to worry about ‘what if’ it comes back, is robbing you of precious time. ☺️

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!

@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!

@loribmt thank you for responding..you are right about worry ......i hope I can stay positive ...