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I'm just full of questions. ;)


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#1 AmyH

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Posted 19 January 2012 - 10:37 AM

So I had some good results yesterday with my blood work.  I guess they are good anyways.  My WBC has went from 260,000 to 201,000 on the 10 days of Gleevec so far.  My spleen is now 1/3 the size it was and all of my brusing/knots have went away.  So we know the medication is working!  I'm hoping next week my # is even lower!

This is normal, right? 

Also, what do you all do to prevent getting sick?  There are a lot of cold like stuff going around at my work and before I would take 3 vitamin C's daily and usually be able to beat it.  Is it okay to do that now w/the Gleevec?  I read in The Cure magazine not to take Vit. C or St. Johns Wort with Gleevec while sitting at the oncologist office. 

When did you guys feel "normal" again or able to do a lot?  I'm used to going, going, going...but yesterday I went back to work, had my doctors appointment, went to Bible study this morning, plus taking care of my 3 kids and my husband, and I just feel like crap right now. 

I just want to thank you all from the bottom of my heart for answering all of my questions.  It really means a lot to me. 

~Amy



#2 valiantchong

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Posted 19 January 2012 - 11:36 AM

Hi,

To answer some of your questions, it is normal that your WBC is going down towards to normal trend within 1 month. So no need to be panicked.

For Vitamin C, I think there are people with CML on Gleevec is taking it daily, I do not think there is an issue on vitamin pills.

Your will need to follow the ELN monitoring criterias. There is a timetable or road map to monitor your progress with the TKI medication. The road map of treatment such that one should achieve CHR where your CBC is normal range within 3 months, then CCR within 1 yr of treatment. If any case one could not achieve the road map treatment, one should change to second generation of drug like Sprycel or Tasigna .

Most probably all the side effect will be lessen after 3-4 months. Since your WBC is high, I think you should take care and not to get infected with flu virus, may be ware a face mask. If I were you, you should be on leave and rest for at least 2 months until your WBC regained back to near normal.

I believe there will be lots of member on the board here will explain in more details, especial Trey, he got a good explaination on CML in his blog.....

Take care.



#3 Rissa

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Posted 19 January 2012 - 12:17 PM

Hi Amy,

I've been on gleevec 9 months now and I'm just now starting to feel like I can do more.  Everyone is different though.  When you get tired, don't push yourself.  Just take your time and be kind to yourself.  :-)  As for vitamins, I've never heard that we can't take vitamin C.  I take it every day.  But St. Johns Wort is a no no.  That's listed on the novartis site.

Rissa



#4 mikefromillinois

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Posted 19 January 2012 - 12:52 PM

Hi Amy,

You can expect some ups and downs the first few months until your blood and body normalize a bit and adjust to the meds.  Hang in there and it will get better and less stressful.  With regard to not catching a "bug": try to avoid close contact with people if you can , wash your hands often, don't touch your face, get plenty of rest, some exercise, and eat a balanced diet.

Wishing you good health and many happy days...

Mike



#5 AmyH

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Posted 19 January 2012 - 03:38 PM

Where are you from in IL, Mike?  I'm not currently in IL b/c my husband is in the military...but we are from there.  The Litchfield/Hillsboro area...about an hour south of Springfield.  We were also stationed at Scott AFB down by Belleville for 6 years. 



#6 GerryL

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Posted 19 January 2012 - 05:40 PM

Hi Amy,

Once your bloods are in the "normal' range you shouldn't be anymore prone to colds and flu than you were before you got CML. I take vitamin C everyday, it can also help with anemia, so I take it with my iron tablet. The iron tablet was recommended by my specialist.



#7 mikefromillinois

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Posted 19 January 2012 - 06:57 PM

I'm about 25 miles straight west of downtown Chicago - on the outskirts of the metropolitan area.



#8 pammartin

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Posted 19 January 2012 - 07:04 PM

Hi Amy,

White counts headed down is a great concept, especially when yours are a bit higher.  I have not been on a TKI to tell you much about how the side effects lesson, I am struggling with the tired zone myself.  Most people say it does disappear somewhat after a while.  Because you have little ones, you are infested with a germy environment (I classify myself also, my son is 16 and a walking germ factory), but if you continue to be careful, washing hands, trying to stay out of the line of fire when sneezing attacks occur, and dodging the projectile spew children of all ages are known for, you should be fine.  Vitamin C taken in appropriate amounts never hurt anyone from what I have read, I consider it an ounce of prevention, hoping for the pound of cure.

Hope you are having a pleasant evening.

Pam



#9 Susan61

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Posted 19 January 2012 - 07:46 PM

Hi Amy:  Feeling like Crap is the best way to describe how you feel., and it will get better.  I will not say it all goes away, but if you read my posts you will see that I still go through different issues after being on Gleevec for 11 years, and I have been undetectable for 9 years now.

     Bible Study is like one of the best medicines you can take.   I do my own personal Bible Study each morning with my coffee to start off my day.  I Thank God all the time for all he has done for me through the years.  Enjoy your family, and just have patience to see things improve for you.  Sometimes you might not have the strength to do what you want to do, but thats okay.  You have that right, as you adjust to the Gleevec.  I started taking Gleevec in Oct. of 2000, and I know all the things that you go through.

   Also, always know that you can get on here and ask us anything you want.

Susan



#10 acb

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Posted 19 January 2012 - 10:48 PM

Amy,

Hello and welcome! You may have already been asked this, but did they have you take hydrea first to help lower your WBC (and allopurinol with it)? Just wondering.

Hope your counts continue to come down. As far as the feeling like crap, that tends to cycle off and on for quite some time. It will get somewhat better though.

Feel free to ask all the questions you want here. This is a great place to get answers!



#11 AmyH

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Posted 20 January 2012 - 07:21 AM

I took hydrea for the first 2 days and my WBC dropped down to like 190,000 really quick.  My Onc started me on Gleevec though as soon as it all came back that it was for sure CML...so I started that on the 3rd day.  It went back up to the 260,000 range when I started Gleevec and then has been slowly working and when I went back after 10 days it was down again to 201,000.  He said it was better to be on the Gleevec to destroy those CML specific cells and not kill my good white blood cells.  Is that not right? 

I'm taking Allopurinol now.  He gave me a prescription for about 14 days - should you take it longer? 






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