7 replies to this topic

[isabel223]

So, I was diagnosed with pretty standard CML about a week and a half ago. I'm only 18 years old, so this seems very crazy. I have adjusted well and started my Tasigna, but I am having a hard time caring about anything anymore. I'm in college, and I don't even feel like going out or trying to make new friends, I just feel as though I'm separated and different from everyone else. Obviously in college everyone drinks alot, and so having that off limits feels like a big dividing factor. Everyone has been so supportive of me and still trying to hang out and get me to come out, but I just feel apathetic about everything. It isn't a feeling of depression but rather not caring. I feel like I'm looking for some purpose in my life or something I need to get up in the morning. I was wondering if anyone has advice or had similar experiences. Like how has it been for everyone having CML and dating, for example? I'm sure that comes up quickly. It seems pretty silly to focus on something as trivial as alcohol while I am so fortunate to not have an accelerated phase of lukemia, but for example I am scheduled to study abroad in Italy, etc. Fine wines, right? Just wondering if any other young sufferers are out there with some advice for me!

Also on an unrelated note, I read that the FDA just granted accelerated approval to a new (FOURTH!) CML drug. Should be out in November. Thank God for TKI's!!!!

[CDW]

Hello Isabel,

Firstly, welcome to the club nobody want to join - it's a very friendly and knowledgeable group and i'm certain you will be bale to get some guidance from here in between doctor visits. Wow, you've only been diagnosed a week; this must all still be settling in for you, trust me it takes time for the facts to hit home. However, with youth on your side and an excellent drug (Tasigna) your life will likely turn out to be pretty normal and with so much research work underway I am optimistic you will see a cure or near-cure before your 30th birthday (that's just my opinion, not fact). There are very few young CML patients as the median age for diagnosis is ~67 (I was 32 at dx) and I'm afraid I can't give any useful advice on dating. 

I too have feelings of apathy at times and i have to remind myself this is a second shot and others are not quite so lucky - my neighbour has terminal cancer at a similar age to me. There are a few people out there with CML who inspire me - try Google Alexa Score - she's a pro wakeboarder with CML and seems to focus pretty well on what's important to her. Take time to rest in the early days and get yourself into the best possible place with your PCR results; also invest some time reading about the tests you will undergo and what they mean. Although things may feel a bit hopeless now, find something that still interests you and go with it. Although you can't drink now you should be able to in the near future - I would caution moderation though. Travelling abroad is very possible, you just need to plan a bit more carefully with your medication and around blood tests. I've been to the carribean twice, cyprus and France and traveled between the USA and UK several times since diagnosis. Study abroad may be a bit more tricky, but with a good supply of drugs and some negotiating anything is possible.

You can still follow your dreams and as you get more comfortable with CML you will often forget about it. Take some time to relax (hard at 18 I know) and set yourself some goals when you're good and ready - there is no reason you won't be able to achieve them. 

Best wishes

Chris

[isabel223]

Wow!! Alexa Score is awesome. Thanks for the great advice

[Tedsey]

Dear isabel223,

I am so sad to hear you are suffering.  BTW, you can drink while taking a TKI.  It is never good to overdo it with alcohol at any time (of course, this is the mother in me saying this), but it is not "off limits" (you may want to take note that drinking is empty calories and can make you fat).  As TKIs are relatively new on the drug scene, since it is processed through the liver (like alcohol is), it is not really known if it will cause damage to your organs in the long term--but so far, so good for most)  It is not trivial to focus on drinking.  It is a right of passage for most young folks at college.  And one young person on the LLS board put it very well when she said that CML takes away many of the choices we once thought we had.  And that is probably why you are focusing on the drinking thing and why the thought of dating seems so overwhelming.  There is no reason to think you will never find someone to love you.  I can understand how it appears to be a huge hurdle.  And most people your age do not have to deal with this.  It is grossly unfair, it sucks.  I hate that you have to think about this and deal with it.  But, there is good reason to believe that CML is becoming a very manageable health condition.  It sure looks that way so far.  Most people do very well on the drugs.  Many can even go off them temporarily to have healthy babies.  Anyone who has a serious health issue at a young age, (for example, diabetes, CML, congenital heart disease, cystic fibrosis, etc.--all that can shorten your life and/or make your life more difficult), has these issues to deal with.  It shouldn't be like this.  But it does not mean you will never find a wonderful person who will love you for all the right reasons.  I send a wish out into the universe for you that you will.  BTW, dating was never easy for me and I didn't have to deal with CML in my teens.  I didn't marry until I was close to 40!  I make a bet you will be involved in a serious and loving relationship way before I!       

After a while, you will get used to having CML.  I know it seems like it won't ever happen.  But it does.  Life will go on for you and probably for a long, long, long, time until the gray hairs start to sprout and your boobs start to sag.  Life should go back to very close to normal, but it take time to get over the terror of diagnosis and having mortality brought to the front burner instead of sitting way back on the stove (sorry, corney way to say that).  It is normal to feel the way you do after such a devastating diagnosis.  It will help if you have someone you can trust to talk to.  Please continue to write.  There are many kind, caring and smart people on this board that will support you.  There are also other young people on this board and on other LLS boards who have CML.  (We are not all old ---technically, I could be your mother, but a young and hip one---of course).

I wish you peace and very soon.  I wish you a quick recovery and good health and an excellent future.

Hugs,

Tedsey

P.S.  Go to Italy and enjoy the wine.  Don't let the CML hold back the joy you can create for yourself in this life .     

[isabel223]

Thank you so much! I think sometimes it helps to hear things echoed back to us. Validation and all that. : )

[TeddyB]

I agree with Tedsey, go to Italy and enjoy the wine. I was in Italy 4 years ago(before my cml days), and the wine was fantastic

Might not want to overdo it, and you may want to check with you onc first, but a few glasses should be fine. (Unfortunately i didnt listen to that advice once, and lets just say a hangover on Gleevec was no fun)

The not caring stuff will pass once you see your life normalizing more, and it will, hang in there

[Taylor]

Drinking is not off limits, just keep it to one or two drinks.

As someone who has finished college within the last 3 years, I can tell you that not being able to drink is not a "big dividing factor."  Don't worry about that.  Nobody is going to care if you only have one or two--if they do then they should get a life.

Also, as someone who was dating when diagnosed with leukemia (I was 24 then), don't worry about that sort of thing either (now married w/ a baby on the way).

[Marathon]

Isabel223

This is my first post here. I was dx 9 months ago. All going well. So far so good with Glvc. Some side effects at times. Manageable. 

I can imagine how you feel. But as you suggest: who cares on alcohol taking into account what we are talking about here?

I decided not taking a sip of alcohol after dx. This race would be of a Marathon type and I want my liver to be in the best possible condition for this race. True as well that I wasn't a heavy drinker before either.

I enjoy now with many more things when I travel: food, concerts, chatting, ........... who cares on alcohol. Enjoy Italian coffees instead........... best in the world.

But if it is so important for you, just apply common sense as in other aspects of life: don't abuse and play safe. Although you should live a totally normal life, don't forget your CML when having some temptations. Maybe hard at first but I am sure you will get used to it.

Courage. This will make you an experienced person maybe before the right time, but this is also having advantages for the rest of your life. You may know now what is really important in this life and you will behave as someone maybe 10-20 more years older than you as regards many things.

I am trying to send you strength to face a tough situation, totally undeserved but ................ who has ever said life is fair. Just look around. It is not. What in the end is important is that we are strong enough to face what life brings, being able to be as happy as possible despite what we need to live with.

All my support.