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recent college graduate diagnosed with CML


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#1 quinney20

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Posted 09 September 2012 - 05:21 PM

Hi Everybody,

I was diagnosed with CML back in May. Two weeks before graduating college. What i hear is that people usually don't get diagnosed with CML until later in life. Is this true? Anyone else on this forum in there 20s and have CML? I'm on sprycel and I'm responding to it very well but I feel like whenever I don't feel well it's the CML and not something else. I also have been going out with my friends in the same college fashion. I need to stop that and find something else to do besides go out to bars. Any suggestions?

Thanks,

Mike



#2 CallMeLucky

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Posted 09 September 2012 - 06:47 PM

It is rarer to get it at a younger age, but it does happen.  I'm in my late 30's, so older than you but still on the younger side.  Good you are on Sprycel and responding well.  Not sure what to tell you about the bars other than try to tone it down a bit so your body has energy to deal with side effects of drug and you don't overload your liver with the drugs and alcohol.  Do you have any interests (sports, music, cars, etc) that you could try to focus on more instead of going out to the bar?


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 Susan61

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Posted 09 September 2012 - 10:07 PM

Hi Mike:  Its a real shock to your system no matter what age, but they did always associate CML with middle age.  I have seen so many cases this past year with younger people.  Congratulations on your Graduation.

Concentrate on what you went to college for, and pursue your career.  You might be using the bars as a outlet for the way you feel because you have CML, but that is the wrong way to go.  You want to keep your body healthy with proper food.  Keep in mind when your feeling down about all of this that you will have a full life ahead of you.  I constantly tell people that CML is not a death sentence like many years ago.  I thank God for all these researchers who have strived to find a cure.  These TKI drugs is the closest thing they have come up with.  They are finding out what can cure CML, but its getting the right combination of whatever we need that would be safe for us to consume.  Your young, and you will probably get to benefit by this cure in your lifetime.  Any type of drug can effect the liver and kidneys.  Be smart in how you live.  Listen to what Lucky just told you also.  If it makes you feel any better I have been Living With CML 14 years this coming Christmas with Gleevec.  Gleevec was the first TKI drug to come out, and they used to call it

The Magic Bullet.  Now I know why.  Please just get on here whenever you want and talk to us, ask questions.

There is always somebody to help you.

Susan



#4 tiouki

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Posted 10 September 2012 - 01:27 PM

Hey Mike!
Similar story for me, I'm 22, I was diagnosed 1 year ago, I was on sprycel since then. CML usually touches older people but it happens also to younger ones.
I was quite in a bad state at diagnosis (very high blood counts, anemia etc...) so the first months with sprycel were a bit tiring cause it needed time to me to feel normal.

Now i'm totally ok and live a very normal student life. To be honest, there is no problems with bars since alcohol doesn't interact with the drug (moderation is always better in any case, though )
I feel the same, i still get stressed easily when i feel a bit bad, but overall it's going perfect.

If you are responding well, like most of us, and have little or none side effects, just live your life as normal, CML should'nt affect you more than a few days per year for a little blood test
Cheers
Pierre



#5 Taylor

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Posted 10 September 2012 - 03:09 PM

Diagnosed about 1.5 years ago at the age of 24, so don't feel too alone.  There are few others here that I know of near our range.

You should not hit the bars too hard as your liver is under a lot of strain with the TKIs.  Good luck with everything...this place is a great resource.



#6 PhoenixPat

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Posted 10 September 2012 - 11:19 PM

Hi Mike - I suggest getting involved with Stupid Cancer - the formal name of this nonprofit is The I'm Too Young for This Cancer Foundation. It's for young adults 18-49. The founder has a strong, supportive working relationship with the National CML Society, is very familiar with CML and other young adult CMLers are active in the organization.  http://stupidcancer.com/

I wish the best for you!

Pat



#7 Badger

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Posted 11 September 2012 - 11:40 AM

Hi Mike,

You can still go to bars, but not drink, which is legal in all fifty states with the exception of Wisconsin (in which case you are required to get drunken than a skunk before leaving). As far as worrying that every little thing you feel is related to your cml going nuts, not to worry. These TKIs work very well and, once you get to car or so, any symptoms you feel aren't related to the cml.



#8 quinney20

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Posted 11 September 2012 - 12:26 PM

Hi Everyone,

Thank you for your comments, I really appreciate them. I've decided to put my liver and kidney as more important then having some drinks on the weekends. This community is a great resource and it's nice to know there are other people with CML my age out there.

Mike



#9 tiouki

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Posted 11 September 2012 - 12:35 PM

Hey Mike,

That's a wise decision, it's always better to go easy on alcohol.
Still, I think that you can drink a few glasses with no problem (everyone reacts different but i've been drinking too much these past 6 months and I'm doing well. I'll reduce my consumption from now though)

Pierre



#10 TeddyB

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Posted 11 September 2012 - 02:35 PM

I got drunk once while on a TKI (celebrating a good pcr result) and i was hungover bad for a loooong time.

Not recommended

I do however have one glass of red wine most evenings and i know others that do as well, no problems so far, liver values are fine.

Just take it easy, and you will be fine.

Im 37 now, so a bit older than you.

Hans



#11 Antilogical

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Posted 11 September 2012 - 07:11 PM

I'm with you, Hans.  I have a glass of red wine most evenings.  If it's a REALLY good wine, I might have another half-glass.  My liver values are awesome.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#12 Happycat

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Posted 11 September 2012 - 07:59 PM

Dang!  All this talk of drinking reminds me I've had a stressful enough day, and I deserve that caramel apple drink. Now I just need to get my barman (aka husband) to make it for me!

Traci



#13 Happycat

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Posted 11 September 2012 - 08:13 PM

Welcome Mike!  I'm so sorry you had to have what should be your happy and carefree years saddled with CML.  You can still enjoy life on TKIs, you can certainly have some drinks, but until you get through the first few months, you probably want to hold off. No sense adding a hangover to any misery you will feel while adjusting to the therapy. (It passes, at least for most of us, after a few months.)

I'm 45, egads, and all you young 'uns on here are making me feel old, old, OLD! 

As for suggestions on what to do that doesn't involve drinking, try communing a bit with nature. Fall is such a nice time to hike, or at least take a walk and watch the leaves fall. Take  in some cultural events that have cheap tickets. When your not feeling well, treat yourself well. Rest. Take a jacuzzi if possible. Maybe get a massage or some acupuncture. Read something you enjoy.  Watch football, an interesting documentary, etc.

HTH,

Traci



#14 TeddyB

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Posted 12 September 2012 - 02:19 AM

Antilogical: Good for the soul

Very good advice from Traci.

Hiking, and massages work very well for me

I get a massage once pr week, as its paid for by the government since i am sick.

I also try to go for a 45 minute walk once pr day.

Oh and Traci, 45 isnt old






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