On June 9 2011 I was diagnosed with cml. Before Christmas my CBC came back with signs that gleevec wasn't working, so they had me get another bone marrow biopsy and told me we will meet after the holidays to look over the bmb and tell me what my options where. Last week we met with my oncologist and she told me that there were no signs of the philadelphia chromosome in my bmb and I am in remission. I felt so happy and grateful but not completely free of fear. How can I get past this fear so I can feel free again.?
My cml is in remission yet I don't feel completely at ease.
Posted 22 January 2012 - 10:21 PM
You are in an initial stage of drug response, but there is much more to it.. I suggest you read the following couple postings:
The key here is that after you understand some of the issues behind your question, you may have a different viewpoint about your question.
Posted 23 January 2012 - 12:21 AM
Hi: I can understand what your saying. I think there is a certain amount of fear of the unknown in all of us. You get good news, but its always the WHAT IF'S that bother us. I think we all do this to ourselves at times. Just keep feeling grateful and thankful for the good news. Its natural to worry about each blood test to make sure your still on track, but it does get better after your Living With CML for a long time. Just keep telling yourself how they know so much more about CML then they did 10years ago. When I was diagnosed in 1998, it was a whole different world in treatment.
I was very blessed when the Gleevec was developed just when I had no other alternatives.
Try to relax and just talk to us on here. We have so many people on here with different treatments, and side effects. We all have side effects, but the best thing is that you can live with them.
It takes time to adjust. Give yourself time to feel that freedom your looking for. Do not try to rush anything. It will all fall into place as you go along.
Posted 23 January 2012 - 10:48 AM
Unfortunately we have a chronic disease and therefore it would be hard to get to a point where you feel "free" again. Unless (until) a cure is found, we will have this with us the rest of our lives and there will always be some uncertainty and concern that things could get out of hand and progress. The good news is that we have very good treatment options that work well for most of us and there is very good chance we will live out our lives with this disease, hopefully suppressed and controlled. I can tell you that over time, if things are going well with treatment, it gets easier and you are not as fearful and worried. For most of us, we get to the point after a couple of years where it is more about how to live with the side effects of our treatment then it is about the disease itself. So for most this will always be there in your mind, but over time it will be less in the forefront and less consuming. Live the best you can in spite of your illness - that is the best you can do.
Posted 23 January 2012 - 08:55 PM
Seth, Not a day goes by that I don't wonder if I will slip out of remission. My last yearly appointment at MDAnderson was so stressful that I lost my job due to being so addled brain and unable to concentrate. Yea, my boss should have understood but you know the adage, "Walk a mile in my shoes", well she wasn't capable of that. The point is that you will always second guess your remission, you just have to keep it in perspective and talk yourself through it by speaking with others who have been through it. Good luck.....
Posted 24 January 2012 - 03:40 PM
Hi sethengland, we share a diagnosis date I am at a similar stage to you, I have not had a second BMB. But my PCR showed a level that means my biopsy would likely not show any signs of the chromosome too. I like you, don't feel at ease - I imagine I never will, to be reminded of your mortality in such a way I think is truly life changing. But I do listen to the advice and experiences of those who have gone before. We all have different experiences, but I hope there will be a time when I don't think about quite so much. My evidence for this is that it has already gotten better since diagnosis. Always know that you can come on here and share your experiences, fears or when you need advice - these people are great - Pin.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 24 January 2012 - 04:00 PM
My doctor only does the BMB if I lose my Complete Molecular Response. If you are still PCRU then BMB is not needed. I had to ask my doctor about them because I only had one and people on the boards keep talking about having them done.
Posted 24 January 2012 - 07:43 PM
Thank you for all your comments. I wish I would have come on here when I first got dx.
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