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Are you confused with the terms remission vs cured? It's interesting how some doctors throw the term around, it can be a bit confusing. Thoughts?

  1. I'm glad you brought this up. With CML, there is no cure or remission. There is a "response," where you can be "undetected." I get uneasy when people say remission with CML because three months later when you take your next test (called BCR/ABL), you can be detectable and back and forth with it. Granted, some people are "undetectable," for long periods of time, but the doc described to me that your leukemia is "in hiding," rather than gone.

    1. Yes, Susan I agree. I think it gets patients' hope up, but I can say we know life forever changes with any of these kinds of diagnoses, but it does mentally feel good knowing you're somewhat in the clear, and that alone can do wonders in moving forward in hope and living more days.

    2. Somewhat in the clear ... can lift your spirt up a bit and hopefully the positive vibes help the "cure" last 😀

  2. This a really good question! I've heard so many terms rolling around me, but few people understand what they are referring to. I guess it's their way to try and understand, but it only seems to confuse things more. My oncologist has never, ever used the word "remission" when describing CML. I did reach a "full molecular response" and was able to take a chemo break for a short while. I have never, ever heard an oncologist describe a cancer patient as "cured". I think that term is best used for describing meat that has been preserved through ageing, drying, canning, salting, brining or smoking. 😁

    1. Yep, I think it depends on the doctors. I have spoken and interviewed many myeloma specialists and can say that they definitely vary in their approaches to this term. However, I do think perhaps keeping that "cured" term on low heat and let it simmer out a tad. LOL

    2. lol! I was diagnosed with ALL and even then I’ve never heard them say I was cured. Shoot! I was soo nervous when my 5th diagnosis cancer anniversary came just because last time I was 3 days short of my first cancer anniversary when I relapsed. Now I’m 6 years old in bone marrow transplant years. I cant Lie I still get nervous from time to time especially when I feel something that reminds of my initial symptoms before I was diagnosed with cancer 😩 I tell myself to not be a hypochondriac you are not a hypochondriac you’re OK😩🙈😩Amanda🐼( team member💜) just a tad 🤌🏾😔Scarred

  3. This is a great question, I’m learning a lot from those diagnosed with CML, this year I’ve learned a lot and even that there was no cure. I had ALL, I appreciate you teaching me so I can learning and understand more 🫂🧡Amanda🐼( team member ❤️)

    1. Amanda so happy you're learning a lot. My walk with myeloma over a decade ago was some trial and error, and plenty of making my own conclusions as well. Keep learning- Keep advocating for yourself. Best!

  4. When I was diagnosed with blood-cancer my oncologist was pleased it was caught at Stage 11 and was able to get into treatment within 3 weeks a nd after my port was installed. Given the diagnosis he felt we mostly likely can get a cure. Having faced other cancers that have come back I mentally substitute the "cure" word with "remission". I an not sure if you are ever really cured of cancer - and suspect your body is fighting it off to some degree every day.

    Hopefully my remission will last and I will do my part to stay positive mentally, get some exercise, eat right and be careful about consuming adult beverages.

    1. now that you mentioned that do you make a good point I just never saw it that way remission….cured. Your right your body does work hard to remain in remission. In a way scary trying not to go down the rabbit hole 🕳 but a very good point 🤔 oh you have to treat our body well it’s been through a lot both of our bodies 🫂Amanda🐼( team member 💜)

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