i have been CML patient for almost 8 years. Now, i have just completed the drug reduction to 20mg spycerl with log 5 condition.i am looking forward to drop the tki and becone normal. however, the medical specialist no plan to do this. I am always treated as cancer patient and lost so many opportunity from my life included finding love and career. People ate worrying your body condition and sometime discriminate. These 8 years under black shadow
Anyone sharing with me? How you guy face cml live?
Have you serious side effects that impede your life?
Once my immediate danger was over,many people who know that i have cml repeated ask me about my health and i wish they would not focus on that
For my own case, i decided pretty early on that CML was going to be a blip that i needed to deal with before i got on with the rest of my life. Around diagnosis and for about a year after, there were some scares, more time than i would have liked being uncertain about the future but impact on my life now? Close to zero.
I moved to a new country, almost no one i know now knows about my CML, because its no one elses business. I dont feel the need to tell everyone that i meet or date about it, i certainly don't think my employer or clients need to know. So i live my life normally.
I sometimes mention to friends that i take medication for a blood condition. If they as more about it , that my body makes excess white blood cells but with the medication its fine. This is enough for most people and its completely factual while avoiding terms like cancer and leukemia....which tend to freak people out and often leads to them treating you differently.
I am not my diagnosis, my life isnt about CML and i would stay the heck away from anyone who wants to keep the emphasis on my past period of illness. If i have moved on, they should be able to.
Regardless or not wether you manage to drop TKI you can live a mostly normal life now. I realise there are some limitations that are out of our control.
I believe that it requires lots of mental effort to get there but it’s there for you if you can move on mentally over time. CML shouldn’t be a barrier to finding love but I understand that it could have an impact and be an issue for potential partners but if you find the right one then it should make zero difference. I think once you get to a point that once you convince yourself CML is not a typical cancer (which it isn’t for the majority thanks to our meds) you can begin to accept and move on. At a log 5 reduction CML is way way way behind you other than having to pop a low dose pill. A very great place to be and a heck of a lot of CML patients would love to be in your shoes including me.
You are mostly the only barrier to living a “normal” life. But I do understand that it isn’t en easy place to get to. As long as symptoms are manageable then career wise should be mostly open to you unless you want to immigrate or become a pilot as an example. I understand that having CML has unfortunately removed some things you can do because of the nature of it. But we evolve and what we think we want for ourselves half the time when we do it isn’t what we wanted anyways. Plenty of things out there for the taking if we allow ourselves to be agile mentally. But it doesn’t happen easily and we can all relate in part.
Al
If you are doing well on the TKI I don't see why you need to tell your employers or prospective employers. Many of us are continuing our careers.
Moving to other country is a good idea but not a short term option for me. It is about how to deal with the Tki problem especially on the cost although the cost already drop so muc after tki reduction.
Max Foundation helps with TKI costs in certain countries. Ask about it.
Also indian generic veenat costs 200 usd per month. I found a little more nausea with it but manageable and well worth it if cost is an issue.
You dont have to change country, you can change circles and/or be very clear with the people in your life how you would want to be treated. Many will be led by your attitude/preferences.
