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#1 cam_kris

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Posted 07 October 2012 - 09:35 AM

Good Morning

I have read different posts on this subject but really never have got a straight answer from reading or actually researching it.

before CML my husband and I would up town 3-4 nights a week for beer at happy hour.  we would have 3 or 4 beers and sometimes even 6-7

getting CML in March of this year, I just stopped, it wasnt fun anymore.  I was worried it was going to effect my treatment plan. (Actually everything i do

im scared it will effect it, as of course I do not want to slow down any treatment progress).

and I have stuck too that. I asked my Onc about it and when i told him how much i did drink he just said ok and went on

and he said that was fine. 

I am on 600 Tasigna a day

one of our favorite things to do is go to the casino.  so a couple weeks ago that is just what we did, I felt great and i had enough of staying home, time to lilve again

so i told my husband lets just go have some fun, and that exactly what we did...  I had about 7-8 beers and we had the best time and i finally felt normal!

and on top of that, no headache and I felt great the next day!  i was worried about that, but carried on the  next day like never had a drink.

that was friday and monday i had labs - they were perfect, liver has never been so good, best lab results in a very long time.  the next monday same thing.

I get my liver results along with my CBC results.  another thing, I have absolutely no side effects to Tasgina, Im tired, but I have been tired for so long, thats my norm.

So really what is the deal here.

I did go on the tasigna interactions and didnt find any

I know that tasigna and alcohol is hard on the liver, and large qtys probably are not what a person wants to do but....there has to be a happy medium here.

I am not going back to going up town like we used too, but we are going on a two month trip in december and i would love to get your opinions

on this

I just want to know, how much is too much, what can i feel comforable at without worring. and any other input you might have.

When we went to the casino, I just said, that is enough, what ever happens happens, I guess I had been feeling sorry for myself long enough and time to live

not die. I finally told myself,  this is not a death sentence, it is a life changer.  but i want to be sure Im not going to mess anything up.......

thank you!

Kris



#2 scuba

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Posted 07 October 2012 - 10:25 AM

Kris - Whatever you did 'before' CML you should feel free to do 'after' CML. A couple of drinks per day is good for you. More than that and it's whatever your genetics allows. Some can drink more some can't or shouldn't. The only thing you'll mess up is lost opportunities by not living and enjoying your time here and leaving it a little bit better for the next group. We all have to leave the Blue planet some day - CML won't be the reason.

(Time for some Oktoberfest Spaten enjoy!)


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 TeddyB

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Posted 07 October 2012 - 11:56 AM

If your liver values are good you should be fine. My onc told me to live life as i used to, and thats what im doing. I try not to get really drunk anymore because the hangovers on Gleevec are not fun, at least not for me.

I have a limit now of max 1 bottle of wine pr evening, and only on special occasions, i get a bit dizzy the day after, but other than that there are no problems.

I also enjoy one-two beers or one-two glasses of red wine most evenings, and have had no problems so far, cheers.

Teddy



#4 Antilogical

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Posted 07 October 2012 - 05:02 PM

My hem/onc said that if I wanted to indulge in some alcohol, that was fine with him.  I am on Gleevec, and both my onc & my family doctor are more than pleased with my bloodwork results, so my 1-2 glasses of wine (mostly reds) with dinner must be agreeing with me.  Salud!


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.


#5 cam_kris

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Posted 07 October 2012 - 05:10 PM

Awesome News!!!  Thank you so much for your responses!!!  I really appreciate everyones input

My mind set has changed. and it feels great!

thanks again!!!



#6 Guest_billronm_*

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Posted 07 October 2012 - 05:26 PM

Hi Kris,

  Live your life as you did before. Just make sure you take your med everyday. I like my wine and it hasn't affected my bw at all. I was dx 5 years ago. I bet Teddys favorite time of the year is octoberfest!

It's so hard living in fear after dx, but eventually you'll calm down. I'm on Sprycel, and my biggest problem is fatigue. I do tend to get a bit apprehensive when I get my bw every month. I think that is normal for all of us.          Relax and enjoy yourself              Billie



#7 Marnie

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Posted 08 October 2012 - 06:10 PM

Hi, Kris. .

I'm on my second glass of wine as I write this.  This has been the worst school year I've had in 26 years, so my alcohol consumption has gone up.  Just be sure that you have a complete metabolic panel (CMP) done every three months and have your doc (and you, of course) monitor your liver.  Most people don't have any problem with alcohol on TKIs but some people have liver issues.

Marnie



#8 cam_kris

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Posted 08 October 2012 - 08:20 PM

Thanks guys!  I will watch my liver and will have my blood work done probably every month just to be on top of it.  This sounds stupid but Im thrilled to death that a few drinks should be just fine.

unless labs show different.

but for now, Im not even going to think about it...

Im having my 6 month BM on monday with results on the 24th very excited to see where I am - hoping for great results!

Have a great week!!  I know I am! 



#9 TeddyB

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Posted 09 October 2012 - 01:11 PM

Billie:

My favorite time of year is Christmas, cause then we drink a lot of Akvavit

I`ll go easy this year though.



#10 Furr

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Posted 09 October 2012 - 05:33 PM

I just Googled Akvavit. That was interesting, and I am curious how you drink it. Do you have a beer chaser? What would be the best brand to try that is sold in the States? What is it similar to that I might have partaken of? I know that's a lot of questions but inquiring minds want to know. Thanks, David.



#11 TeddyB

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Posted 10 October 2012 - 02:27 AM

If you can get Lysholm or Løiten Linie Aquavit, then that is a very good choice, my favorites.

Optimally you have a good sip of cold beer, then some room temp Akvavit to follow, or you can have some Akvavit first, then some beer, whatever tastes best for you.

Just dont freeze or put the Akvavit in your fridge, cause it loses a lot of its taste when its cold, at least the the Norwegian Akvavit.

A quote from someone who makes Akvavit: "Never put Norwegian aquavit in the freezer, Nicolaysen admonished me. "It goes all the way to Australia and back to age, and then you put it in the freezer! Good God, that's a sacrilege for those of us who make it!"

Its amazing how perfectly happy you feel after a few glasses of this stuff combined with beer

Also, we usualy drink it with food, preferably meat which is rich in fat.

If you can get me a list of what kinds of Akvavit that are sold in the states i can recomend something for you.

Skål!

   http://www.examiner.com/images/blog/wysiwyg/image/LinieShot.jpg






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