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drug question?????

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#1 sferrazza


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Posted 03 April 2011 - 05:17 PM

Hello CMLers,

I was diagnosed 3/2010 put on Gleevec, side effects sucked mainly horrible fatigue and edema.  I was put on Tasigna 5 weeks ago and had a constant headache, onc took me off for 4 days to see if it was the drug causing headaches.  Sure enough it was! Anyway doc let me stay off it for a week because we were on vacation.  I feel like a million bucks, high energy, no nausea,  no itching, or rashes (accept for the sun burn I got while laying on the beach in Florida with my fruity vodka drink!) I ran 5 miles today and am dreading going to the onc tomorrow cuz he's going to start the f$#%@#$ poison again.  My question is this, can we be on a drug for 6 months and off for 6 months, or some other way to be off this shit for extended periods of time.  Have any of you discussed this with your onc?

I feel like complete crap on these drugs, major fatigue, nauseous, rashes, headaches you name I got oh and some funky hairs grows around my eyes when I take gleevec WTF is that!  I teach special education (when I can), have 3 kids and a life, but on drugs I can barely manage to survive a week then in bed most of weekend.  I don't want to take this shit any more!!!!  oh my sorry I'm getting pissed thinking about it cuz I feel so great right now!

Thanks for listening


#2 lala


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Posted 03 April 2011 - 07:21 PM

Dear Susan, Oh my gosh---are you making me laugh!!!!!  :-)  the @#$%^&* poison!!!!!!  and i know what you mean about the fatigue and spending the weekend in or close to the bed/couch!!!!  i am taking my medicine in a different way and it is helping but i have never gone without it....sure would love to feel good for 6 months!!!!  YOU are a funny girl!!!  love it!  let us know what your onc says tomorrow!!  keep fighting!


#3 sferrazza


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Posted 03 April 2011 - 09:59 PM

thanks for responding LaLa,

So how do you take the drug?  I take it at 6 and 10pm. But still the headaches, wonder if the time would change if I took it at 3am and 3pm? UGH !! BTW where the heck is everyone, no one has commented but you, I want to know so much more about the drug side effects people have, am I just a big fat baby?

#4 janne



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Posted 04 April 2011 - 12:04 AM


Totally know the feeling ! All valid questions. On Gleevec 2 1/2 years, just recently switched to Tasigna the last few weeks. Still trying to get established in a routine for taking it twice a day on empty stomach. Felt extremely well also off the medications. Although too soon to know the full blown effects of Tasigna, I have thus far not had the edema and the foggy feeling that I had on Gleevec. I have had to cut back to a lower dose because of an elevated pancreatic enyme though. Liver enzymes are okay and blood counts also. We will see if I go back up to a more "poisonous" dose this week. (I have used that word too on a few occasions ! ) Am hoping that as I get more accustomed to Tasigna, certain effects will mellow out. Have not had a headache every day, but I wonder if that is dose-related for me, i.e. lower dose, less effects. Let us know what your oncologist says about being off the drugs for a time. I would not even presume what he/she might say, but who is enduring the side effects, you or your doctor ? I personally feel that quality of life is vitally important and as long as I have to work full time to secure my health insurance benefits, I have to maintain some reasonable quality to be able to concentrate and do my work, or else put my job at risk, without which I have no income or health insurance benefits. I find it to be a delicate balance. I have felt exactly as you have expressed yourself here and I do hope you have some better days. There are great advocates and advisers on this board. And thankfully, some terrific humor too !!

Janne .

Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.


CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 

#5 reedgirl



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Posted 04 April 2011 - 06:30 AM


  I just asked the Onc this question 2 weeks ago.....my answer....."absolutely not!"  Going off and on a drug breeds resistance is what they told me, he sees Dr. Talpaz at U of M.  I asked because my husband has been off medication longer than he's been on since being diagnosed last July.  He was taken off Tasigna end of December and not put on Sprycel until March 30th.  I told them he felt so good being off medication and his leukemia didn't progress so why not just take the drug for a month or so then go off for a month or 2.  That's when they shot me down quickly by saying that would breed resistance and the leukemia would go into blast phase.  The reason they kept him off so long was to give his body a chance to recover from the last 2 drugs so he could go on the 3rd drug and hopefully stay on.  She said its like taking an antibiotic and stopping it as soon as you feel better.  The infection comes back usually worse.  Unfortunately, as good an idea as this sounds, its not going to work  .

Good luck to you,


#6 Cathy


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Posted 04 April 2011 - 07:34 AM

Hi Susan, I was dx may/2010 and was on Gleevec till Feb and it stopped working so I've been on Tasigna for 4 days now. I was feeling so lucky how I thought I didn't have many side effects then Bamm yesterday I had back pain and stomach pain. I had to go look at the list didn't even think I had read those. It's got some better today still there. I have the hair follicle that hurt its the weirdest feeling and the mouth soars but hoping they go away since I'm not on Gleevec that was from the Gleevec. My Gleevec rash is going away! Yeah! I asked my onc also about going off the drugs for a while got the same answer absolutely not! blah blah. LOL Glad you had a good vacation! and hope the headaches don't come back. I've been grateful I haven't got them yet! but I'm only on it 5th day. and yes we all hate taking the pills (poison) but we don't have a choice.

Hope things go well at your apt. Lucky you got to go lay on the beach I'd love to have a week off I asked if he would give me a week off gleevec to go to Tasigna and he wouldn't even go for that! I have to work full time to for my medical benefits! So we all have to plug on through! And this all just sucks in my opinion! LOL

Take care, 



DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!


#7 cometbro


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Posted 04 April 2011 - 08:14 AM

Hey Susan, see previous threads for more info on people explaining their Tasigna side effects:





Maybe you can ask the doctor about taking an Advil every once in a while when the headache becomes too bothersome.  I would think the headache side effect would become less of a problem as time goes by.  I had occasional headaches at first (started 5 months ago) and now they rarely pop up.

My more constant side effects have been occasional itchy scalp, can't sleep more than 8 hours, and skin dryness. Other than that, i've been able to resume normal activities.

If you feel better with Tasigna than you did with Gleevec except for the headache issue, definitely ask if popping an occasional Advil would be fine.

#8 janner25


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Posted 04 April 2011 - 09:25 AM

Hi - I started tasigna upon diagnosis in October 2010.  I had MAJOR hangover headaches (that's what I called them - and was mad because I didn't even enjoy myself the night before) for about 2 - 3 weeks.  But they did go away.  Still have the fatigue - which sucks.  Some days are better than others and have come to the realization that I'm not going to be able to do everything that I want to whenever I want to...hard adjustment being almost 37 with 2 young boys.  Even baby showers wipe me out on the weekend after working during the week and taking care of the boys while my husband works 2nd shift.  So now I need to (haven't started until this upcoming weekend) be like a dictator over our social calendar blocking off days so I can handle LIFE!  That's my only complaint so far.

I have my 6 month visit at the end of April.  Since I believe I am PCRU (2nd opinion PCR showed 0% 4 months into things), I am going to ask if we can cut my dosage in half so only 300 mg / day instead of the 600 mg / day.  At the 3 month appt, he said if the fatigue was still troubling me that we could discuss options.  I don't necessarily want to start a new drug since this one works and the only really side effect now is the fatigue - but...if we can cut in half to see if that helps with the tiredness .....

Good luck - and hang in there!  It will get better if you stay on it to work through the side effects...and I was a big taker of tylenol during the headache phase (was ok by my doctor - I unfortunately am allergic to ibruprofen).


#9 CallMeLucky


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Posted 04 April 2011 - 10:17 AM

I dread taking a drug break should the day come that I have to.  Right now I know I am not 100%, but it is too hard for me to tell how lousy I feel because I am just basically adjusting as best I can.  If I came off the drug and felt really good, I would be so pissed having to go back on.

Unfortunately on again/off again doesn't seem to be an option.  It sucks, we just have to get used to it.  I was pretty disappointed this weekend.  I consider myself to be doing pretty well and not have too many bad side effects.  It was my wife's birthday and I took her away overnight to a casino.  We haven't been in years.  I purposefully didn't plan to do too much, and I was careful leading up to it, and even had planned breaks throughout the day.  Overall it went fine, but I had a hard time enjoying it.  We went to dinner at a nice resteraunt, I can't eat the way I used to and enjoy it.  We walked around the casino, I pushed through, but felt every minute of it.  Overall I enjoyed the fact that I was able to be there at all given my circumstances, but I just could not enjoy it the way I wanted to, even though I tried my hardest.  When we got back home on Sunday, I sat down on the couch with my coat and shoes still on and just passed out for about an hour or two.  What can I say, this is just the way it is now.

I used to call the Gleevec poison too.  Then my mom asked me one day when I was ranting about it, why I call it poison if it is what is keeping me alive.  I got the point she was trying to make, but it still feels toxic sometimes.  I try to just remember that this is not elective and it's not the drug, underneath it all, I have leukemia.  Without the drug, the leukemia would make me much sicker than I feel now.

Hope you feel better soon.

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%


#10 Tedsey


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Posted 04 April 2011 - 02:48 PM

Dear Susan,

Funny, Iike so many, I never thought of Gleevec as a poison.  It did change the quality of my life, but given I would almost surely be dead within 5 years, I accepted my fate.  I had a baby and a little toddler when I was dx.  I felt I could endure anything that would let me see them grow up.

From the very beginning, I have had severe myelosuppression and thrombocytopenia, not to mention severe anemia after 5 months on Gleevec.  I have not been allowed to work out.  What I would give to run around the block (anemia causes racing heart and often it is hard to breathe)!  I am turning into a blob!  Just getting over a period from hell.  I finally stopped bleeding.  It has been almost non-stop for 2 months and full-time this last month (likely the TKI is part culprit in this problem).  Needless to say, the severe anemia is back and I was hemorrhaging mostly because of my low PLT (literally gushing so much blood, I couldn't leave the house).  It has been a year and a half since dx and I still have very low counts all over the place (red and white).  I was only given a break my first two months on Gleevec.  But now I suffer though whatever comes or persists.  I don't want to let this CML get the best of me.

I go for my 18 month PCR next week and we shall see...  I switched to Sprycel after 9 months on G, and it lowered my PLT even more, but I generally feel better on it.  But please give Gleevec a good try.  You can always try another drug to see what fits best.  As not to scare you, what is happening to me is uncommon for most CMLers.  Nevertheless, I am happy to be alive and live a somewhat "normal" life with this disease.  And as a vain female, I still have my hair!  I cannot always drive, go out shopping, or take my kids to the park, but you adjust.  There are all kinds of awful physical maladies people must endure.  And much like we with CML, one cannot tell by just looking.  And if this drug works and brings most of us to an average life span, then it sure is worth it to me, (there are brief respites from pain or feeling sick--not all diseases are like this---but I have to admit, the mental torture is probably the worst of it all).

I wish you all the best.  Living in the cold Midwest, the warm beach sounded so wonderful.  There are times when life can be very good.  This week, I am free of the severe mouth sores I have gotten with my switch to Sprycel (I had to see an oral pathologist because they were so bad--I couldn't talk, eat, and not being able to read to my kids was very tough).  I am rejoicing and eating spicy food and citrus--I don't know how long this freedom will last!  I am taking major advantage.  I am singing, talking, and reading to my kids.  When my HGB goes up to 8, I will run to the park with my kids, take them grocery shopping, and walk around the block!  How yummy that orange was!!!!!  Never thought I would find so much joy in eating acidic foods!  Although CML sucks and the drugs "hurt", with some adjusting, life can still be decent.  You just have to try not to compare yourself to your old self or others who appear to have less to deal with.  It is so hard, but it for me, this has been the best way to deal with so much tragedy compounded (and having two little children is something that is easy for me to live for).  I will let everyone know when I have finally reached a persistent equilibrium.  But I am suspicious that , "rolling with the punches" is the best I will ever be able to do.  "I got through this, I will get through that."  "I did not die of a brain hemorrhage in my sleep, I am good for another day with the rugrats!"  It is so wonderful to make it to another spring and hear the birds chirping after a loooong winter.  My 5th year wedding anniversary is coming up and it is another year older with my best friend.  Despite not being exactly the same woman he married, at this point, my husband still wants to be with me.  A true gift! 

And about short drug breaks and disease progression, it appears the jury is out.  It seems that breaks or reduction in dosage may be OK for those who have reached MMR or CCyR.  Nevertheless, I think the general consensus is to try to stay on the drug, at all costs, if you can.  From what I have been reading, with all I have been through with myelosuppression, thrombocytopenia, and anemia, a reduction in dosage or drug breaks may have relieved most or all of my symptoms.  But that is not the route my onc wanted to go.  She, like many other oncs, feel any break will give the disease a chance to progress.  And in my case, my PCR was still high at six months and remained so at 1 year (compared to people on this board who have zeros in their PCR values).

I used to live in Japan as a young person.  There is a word GAN-BAH-REE-MASS!  So, most of the time, I ganbaru (endure and persisit).  It appears we all do.  So, my BIF, GAN-BAH-TAY KOO-DAH-SIGH (please endure)!  What we are going though, in all degrees of suffereing, is honorable.  But I am grateful that I am from the west where it is socially acceptable to bitch and freak out every now and then.   And this board is invaluable for empathy and support.


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