Thanks so much that’s what I needed to hear.
Thanks. Just wondering having finished induction with good response (no leukemia cells or blasts seen). About to start my 2nd round and started wondering what my future looks like—time to visit family & travel?!
Hi, I can only speak for me: I have AML now inactive ( I will never be able to use the R word but we are quite fine with inactive) and CML which is inactive. I also had MDS which is the fertile ground upon which AML and CML like to play. At this time we are controlling MDS which is at the moment gross anemia. After 6 week hospital stay at initial discovery, I was able to opt for oral and at home. For a period of time it was monthly ( my oral chemo was initially one week of the intense stuff combined with venetoclax, then three weeks of venetoclax; then the cycle would begin again. I was able to wean off the venetoclax to just Inqovi one week out of every ( soon became 8 weeks). I am now in a 12 week cycle atm---Inqovi down to three days, no venetoclax--cells are recovering in about 6 weeks so I get a few weeks in there as a semi normal person-- out for lunch or dinner but no crowds, food hygiene, mask, etc-- hair cur but they and I are masked, etc). This has been my new normal and will most likely be for another 18 months. I also have weekly blood draws----every Monday. Also my normal atm. Because my leukemia appeared rapidly ( like in 2 weeks from a routine blood draw to a pre surgery blood draw) I'm not cleared for commercial travel nor for much more car travel than 2-4 hours away--and of course its mask and gloves. However, I do have now a block of weeks in there I can almost be a normal person, but I dont go without a mask and I dont do anything with crowds. Im sure this is not what others experience as I have heard a few say when they are off chemo they lead a completely normal life and don't even bother masking etc. I'm 74 almost 75, I am NOT decrepid or inactive but I can tell you I have not even had a sniff of a reoccurrence because I am very cautious. I hear relapses are like poison ivy, each episode gets worse, is more erosive to the system and really makes you a bacteria virus magnet.
So net is there IS a like normal potential in your future I'd imagine. Do all the things you should, don't take risks or gambles. My dear friend a bit back felt bad for her one house plant, so she transplanted it----AML relapse from the exposure to the dirt. She recovered fairly quickly and now is on the path for a BMT. But the example is key---mind the dos and don'ts and youll have a greater chance I believe for a longer new normal. Hope this helped. Huge hugs, feel free to ping me anytime with questions.
Michele
Hopefully others on this support team will respond to your question Paula vs the robot generated answer. From what I’ve read from others on this site through the years, there are those that do get a break in treatment, but best to hear it from them & also to ask your oncologist. Ok.
Great questions! The timing between maintenance therapy rounds is highly individualized and depends on several factors your care team will evaluate, including:
- Your specific type of leukemia
- How well you responded to earlier treatment phases
- Your risk classification
- Your overall health and how your body is Show Full Answer