How does the cml condition or limit you?

Hi

I fully agree with Eva. I am more or less on the same page as you in treatment (6 months) and I know the feeling. Although I also discourage excessive drinking (even for a person without CML) you should still hang out with your friends and continue living your life. CML does not mean you have a bad health (although you have an illness) and should be avoiding stuff, CML means you have to have some daily routines and rules which support medication adherence and not compromising drug effect.

I know it is difficult to adjust in the beginning but we as a patient group really have to consider what compromises we have to make but at the same time  we can not let this illness drive us. It is a chronic condition which is manageable such as diabetes or hypertension. Would you avoid Ibiza trip with hypertension or diabetes? Probably not. So you should not avoid it with CML as well. Just, as said above, make sure medication is taken and try to limit alcohol intake. Having some beers per day for one week does not wreak havoc on your liver. 

Timo

When I was 1st diagnosed I didn’t touch a drop for 6months. Once I hit CCYR I began drinking again. I dont drink that regularly but I’d say maybe once every couple of months I may have an eve out and drink more than I should. You will defo have worse hangovers and prob be tired for days or even weeks after if you’re anything like me.

I can see that you’ve asked this question a few times in several different ways. What I will say is it’s early days for you so don’t be hard on yourself for any decision to drink or enjoy life. I promise you it will come again and you won’t feel guilty for wanting to be young. I will repeat CML is a chronic condition not a death sentence anymore. You’re scared like we all are at times because it has the cancer word attached to it. Try to break that attachment. Over time through more PCR tests amd downward trends you will get the confidence that there is nothing you can do that will give you a bad PCR other than not taking your pills. That’s all that’s consciously required of you. And I repeat don’t miss a dose.

My consultant told me to carry on being normal he even said take your TKI with a beer if you want (and I am on a Tasigna lol). I wouldn’t advocate that but the point is anything in moderation is fine. Drinking doesn’t always mean drunk, you can be merry or even borderline unresponsive it won’t affect your outcome with CML. It will make your liver work harder but I’ve had a few excessive nights normally celebrating PCR results and my levels have always been perfect. I really get the paranoia but it will go and if you have understanding friends they won’t be pressuring you to do anything you don’t want to do. But I say take a risk go and have fun. If you got run over by bus tomorrow you’d have lost out on no doubt a wonderful time with your friends as a young person should and it may be a good distraction too! Go and live your life buddy as best you can. But we all get it! The one caveat is you’ll prob beat yourself up mentally for weeks after because you’ve “poisoned” your body so I get that too.

The one or two things that effect me a lot are cycling bouts of fatigue, insomnia and days at times of feeling generally washed out. All TKI or psychological or both no doubt. And of course it’s natural that we all worry from time to time. The worry never goes but I will say it changes. At 1st we worry about hitting milestones then worry about maintaining them. So if you’re waiting for a time when you never think about CML and 100% confident that you’ll be ok that day won’t come is the harsh reality and I think acceptance is the biggest key to moving on with life rather than resisting the reality that you have likely lifelong CML.

Al

I understand mate and only you are the one to know when the time is right to move forward. Always here to offer advice as best I can because I genuinely understand the struggle I’ve been there myself many a time. But again I promise you it will come not now and not maybe in the immediate but it will come. Hang in there and keep offloading as you are is the best way to start a road to recovery mentally and physically.

Al

I don't know but even going out into the street I notice that it is too great for me, when I am with a friend who knows it, I feel anxious because I notice that everything has changed both from my point of view and yours, on the other hand I live in a  small city where we all know each other and I am afraid of being able to meet people who know me and have been without news of me for almost a year since I have been locked up at home without going out and without showing signs of life anywhere or social networks or anything , having to explain what has happened to me and where I have been all this time I suppose it also gives me anxiety, I have always been a somewhat unstable person so I suppose that this disease is magnifying everything a lot, even so little by little I think I am making some progress, perhaps too slow but I suppose I will have to take things calmly in all aspects, thanks for your interest, greetings.

Very sorry to hear you are going through this!

Sounds like you need support to get the life you want back. From what i read your struggles are primarily mental at this point. I'm assuming your treatment is going well and you are either in MMR or on track for same?

Many of us didn't need much time to be functional physically. Are you well enough to work? If so you can move out on your own. I can imagine that might seem overwhelming at the moment and i would urge you to seek help for the social anxiety - don't lose your life and happiness to it. Anti depressants can be useful but they should be used as a temporary support rather than an end point.

Just before i got diagnosed, i learned vipassana meditation and it helped me. Maybe it can help you too, there is a centre near Madrid and one outside Barcelona.

Hello, I am physically fine except for some side effects of the medication, however despite feeling fine, my CRP response for months 3 and 6 was suboptimal which does not help me feel calmer but quite the opposite, even so, at the moment my doctor preferred not to rush to change TKI and I continue with 400 mg of imatinib for the moment, I hope things go better, regarding your retinal problem, what a coincidence, I had a retinal detachment about 3 years ago and I lost part of the vision in both eyes, especially the left, however I can lead a normal life in that sense despite the loss of vision, even so it has been an issue that has caused me a lot of physical and mental instability, although since The diagnosis of CML that other problem, although it persists, has gone a bit to the background since it is less serious than my current problem. As for meditation, I have been meditating for several years, however since my illness I do it every day. I used to do it only a couple of times a week or three, but now on a daily basis, if it is true that sometimes it helps to calm me down although many others it does not completely solve my anxiety, as for work I was in my last year of my degree. (law and international relations) I hope to be able to take it up again next year if everything goes well and I feel strong, and as for anti-depressants, little by little I am reducing the dose in order to leave them soon, in short I am making efforts to treat to redirect my life, thank you very much for your advice and for trying to help, greetings.