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friend started the T med


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#1 lala

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Posted 04 February 2011 - 08:32 PM

Hi....this is Lala from Chicago.....I have written before----i have had CML for 5 years and have responded to Gleevec----the labs look good---side effects not appreciated!!!!  My friend from work also has CML, crazy, huh? and just started taking the T medicine (not sure how to spell it!!!!)  as Gleevec wasn't working for her.  I know her daughters are reading this and would appreciate any info you can give them regarding this change in medicine.  Has anyone responded well to T after not responding to G??  I know they are looking for some encouraging words!  Thanks, Lala

P.S.  She was on Gleevec for 2+ years.......



#2 cpsn0000

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Posted 04 February 2011 - 08:33 PM

Are you speaking of Tasigna?



#3 lala

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Posted 04 February 2011 - 08:36 PM

YES!!!!!!!!!  :-)



#4 Guest_billronm_*

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Posted 04 February 2011 - 11:26 PM

Dear LaLa'

  We have a lot of people on this site that haven't responded to one med and not another. I was on Gleevac for 3 years. The side effects were so bad my onc finally switched me to Sprycel. I feel like a new person in a good way. Some of us respond to Gleevac and some of us don't. A lot of people are on G and have no side effects at all.  I guess it must be our different body chemistrys. A lot of people are going on tasigma. Gleevac has the most side effects. I have only been on this site a couple of months. I have had cml 3 years, and I have learned so much.  Any time you have a question just log on someone always can help you out. Also I don't feel so alone anymore as sick as I got sometimes I looked healthy. So no compassion there. People have to see blood before they react to anything.

                                  Best of luck to you Billie

If you have had a bad day, come here, we'll help



#5 hannibellemo

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Posted 05 February 2011 - 09:15 AM

Lala,

I just found out that one of my colleagues at the city has CML, too. I don't know him and he works in a totally different building - I just thought that was weird. His supervisor told me (she knows I have CML) she didn't give me his name but one always finds out. I told her to tell him he could contact me anytime he wanted but so far he hasn't reached out. I doubt HIPPA would approve.

How lucky your friend has you to talk to through the many years you both have in front of you! Hmm, my best friend (since we were 6) and I do everything together.... I wonder!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 lala

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Posted 05 February 2011 - 09:55 AM

Hi, Ladies!  It always does my heart good to read these postings.  Thank you for your kind and inviting words!  Lately, I have had trouble with the "I look good so I must be healthy" problem!!  No compassion, for sure!  I agree, my friend and I will be working together for many years as I do believe that---at this time I am trying to get her to believe!!  Yesterday, I told her to have faith, but I know that it is easy for me after having such a good Gleevec response.  It is very scary to find the meds are not working, and it is time to try something new.  I would really appreciate more info regarding this new medicine as she and I really don't know much about it, and it would make it easier for her daughters to figure all this out.  Thanks to all!  Lala    



#7 reedgirl

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Posted 05 February 2011 - 11:39 AM

Lala,

   My husband was diagnosed in July of 2010.  He was on Gleevec for 2 weeks then taken off.  He was put on Tasigna in October, 300 mg once a day, until beginning of December when he was increased to 300 mg twice a day.  He was taken off the med's after 3 weeks of 600 mg due to elevated liver enzymes and elevated bilirubin.  This was a problem for him from the beginning of taking it. He also experienced a bumpy rash all over his body, his eyes were very yellow, most of his skin was red, but around his eyes and face he is yellow-ish, his scalp is very itchy and sensitive.  Those are the worst side effects he's experienced, liveable but very bothersome.  He was off the med's for almost 5 weeks then was put back on at 300 mg.  We are waiting to see if his body can handle the medicine, if the enzyme levels go up again, he will be taken off and put on Sprycel.  Now to the good stuff about the drug.....his leukemia has responded remarkably.  He has an abnormal chromosome situation with his cml....he does not just have the straight 9;22 mixup he has a lot of additional chromosome abnormalities.  We see Dr Talpaz at the U of Michigan because of these abnormalities.  I am so amazed at how well he has responded to the drug, not sure what his reduction on the bcr test would be but its significant!

  I wish you and your friend the best of luck with your battles.  Tell her to not get too worried about the side effects, they say taking benadryl can help the rash...my husband would not take anything, just too worried about his liver counts.  They also say the side effects for most diminish.  How long was she on Gleevec and how low did her pcr test go?  I am intrigued as to why the medication all of a sudden stops working.  Tasigna is a very good drug to fight cml, she'll do very well on it I'm sure.

Audrey



#8 mike43147

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Posted 06 February 2011 - 08:41 AM

I started taking Tasigna in May 2010, little to no side effects.  Results are great, reached 3 log reduction just last month.  Good luck to your friend, I hope Tasigna works as well for them as it has for me.

Mike



#9 reedgirl

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Posted 06 February 2011 - 08:51 AM

Mike,

  Did you not experience the rash or the scalp itching?  How have your blood counts been while on this med?  Like you the drug is working well on the leukemia, but these side effects for my husband are less than pleasant.  Then again, most all of them have side effects.  Great to hear how well your doing, here's to even better results!

Audrey






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