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Gleevec to Tasigna?

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#1 AmyH


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Posted 23 February 2012 - 04:56 AM

Okay, so my oncologist saw something over the past week or attended some sort of conference with top CML experts in Texas and New York.  They all talked about how the 2nd generation TKIs were better and you get a deeper response that way.  I'm currently on 400 Gleevec and doing well (hardly any side effects) and I'm really nervous to switch.  What do you all think?  He said it would be different if I was older, but since I'm 31 that he wants me to use the best medicine out there and get a deeper response for a longer life.  I really love how Gleevec has over a ten year study and I'm nervous with taking something that is new.  He first said Sprycel, but I've read so many horrible things about that drug and I know women my age that are on Tasigna and doing fine. 

Opinions please?


#2 Sneezy12


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Posted 23 February 2012 - 06:31 AM

What are your FISH/BCR-ABL values?

#3 sschneck


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Posted 23 February 2012 - 08:26 AM

I don't know, I got a great response from Tasigna but broke out in a terrible rash and now my Doc is thinking about putting me on Gleevec.  I'm not sure why he would switch you if you are responding to it and not having side effects.  Have you reached MMR? 

#4 AmyH


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Posted 23 February 2012 - 08:36 AM

Hmm.  I'm not really sure if this is right, but it says:  bcr-abl t(9;22)  transcript variant: ;210-b3a2  ratio: 0.5

Is that what you wanted?

#5 AmyH


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Posted 23 February 2012 - 08:38 AM

I've only been on Gleevec since 1/7 of this year.  All of my blood work has went back to normal, but I haven't had testing yet for MMR.

#6 sschneck


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Posted 23 February 2012 - 08:53 AM

Amy that's the BCR/ABL test...not sure what the numbers mean though....Dr. just told me I achieved MMR....Trey may know what those numbers mean from your test! 

#7 AmyH


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Posted 23 February 2012 - 09:01 AM

Thats from when I was diagnosed and they did the BMB.  I haven't had any other testing since then...just blood work to watch my WBC go back down to normal..or some what normal I guess.  I get a more in depth blood work test in April and then another BMB in June.

#8 Trey


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Posted 23 February 2012 - 09:51 AM

There is no right or wrong answer, and both you and your Onc have valid points.  Your diagnostic PCR ratio of .5 (which in percentage terms is 50%) is just a starting point and does not tell you how you are responding to Gleevec.  You might suggest to your Onc that you wait until your next FISH or PCR to see how you are really responding to Gleevec before you decide. 

#9 CallMeLucky


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Posted 23 February 2012 - 10:06 AM

Not to be negative but I wonder if your Onc saw his sales rep at a junket.

Seriously though, here's how it was explained to me, I see a CML specialist at MSKCC.  I had asked about being switched to another drug because I read they work better and I have some side effects from Gleevec.  My doctor said if I was doing well on G, there was no reason to switch.  As you mentioned there is more history with G.  Yes the newer drugs seem to work better up front, but they haven't been around long enough to show if they do anything better in the long run, or if there are any dangers with them over long term.  They are probably fine and it likely doesn't make a difference if you switch.  But my doctor was very clear about why would I switch to a different drug if the one I am on is working?  She said I would likely trade some G side effects for different side effects and while the newer drugs tend to have less side effects for many, for a good majority they have similar or other side effects and in a few cases they have more serious side effects.

So the question becomes more about is a different drug for you better than the one you are on now.  I don't know your doctor and most likely he/she is looking out for your best interest but has not necessarily thought this through beyond some studies that showed the 2nd generation TKI drive a deeper response more quickly.  Some questions to ask the doctor are "what side effects can I expect if I switch?" With Tasigna there are a good number of people who have trouble with skin rash.  Myelosuppression is something to consider anytime you change drugs or dosage.  You should discuss the fasting restrictions required with Tasigna with your doctor and determine if it is feasible for your lifestyle.  Be honest with the doctor and yourself, if you think you aren't the kind of person who can stick to the schedule it would be unwise to switch to the drug and then be non-compliant with taking the meds as needed.  You also need to watch for Pancreatitis with Tasigna and although it is very rare, you can't completely ignore the black box warning regarding the potential heart issue that can be caused by Tasigna.  With Sprycel, a good number of people have trouble with pleural effusions and there is a rare but serious side effect known as PAH (pulminary arterial hypertension) which can be very dangerous.

I don't bring all of this up to scare you into not switching (although I think that is exactly what my doctor did to me) but the reality is that if you are going to switch you should be aware of these things and fully discuss them with your doctor.  Too often it seems doctors, in all specialties, are so quick to jump on things without really thinking it through, especially from the patient point of view.  Has the doctor really weighed the risk of your counts potentially bottoming out vs. the perceived increase in benefit from the newer drug?  Chances are your counts wouldn't bottom out, the new drugs are pretty safe for most people but it goes back to the question of why would you change if what you are using is working?  And that is where you really need to look and understand why the doctor is suggesting switching.  If he just want to switch you because he basically saw a commercial showing that Tasigna does a better job of getting stains out of your laundry than Gleevec does, perhaps that is not a good reason to switch.  If he feels your response to Gleevec has not been optimal, then that is a completely different conversation entirely.

So I don't think you should be reluctant to change for the right reasons, the key is understanding what is driving the decision and if it makes sense to you and for you.

One last thing to keep in mind - Gleevec will be generic in a couple of years and the cost will be considerably less.  Tasigna and Sprycel will be under patent for many more years.  If you have good insurance this may not be an issue, but it is something for some people to factor in to their decision.

Sorry if I took you in a direction you didn't want to go.  Obviously all decisions should be made between you, your family, and your doctor, not what someone on the internet tells you.  This was the way the argument was presented to me by my doctor.  Many would disagree that there is any problem switching drugs.  I believe it is best to hear all sides of an argument before I make a decision.  If you think I'm crazy or too cynical, please disregard what I have said.

Best of luck.....

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 AmyH


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Posted 23 February 2012 - 03:51 PM

Thanks for your input! 

I'm not sure military doctors really see sales reps as we have 100% medical coverage.  They take $ out of my husband's check for insurance, but we don't have co-pays or anything...so I don't believe they would make any money off of me.  I guess they could make $ off the government?  Not sure how that works.  He first wanted me to take Sprycel, but I said no and that maybe I'd take Tasigna so he said he would order that one as well. 

I'm not sure what it was that he went to, but he was gone for a week, so I'm assuming it was some sort of conference for oncologists.  Maybe oncologists that are in the military?  I have no idea.  Anyways, this is where he saw this board of CML specialists and they were all excited about the 2nd generation TKI drugs...so in turn he also got excited about them.  I honestly feel like he does want the best for me.  I usually can't stand doctors and would never go to the doctor (which is why I ended up in the hospital when I was diagnosed! haha) but I feel like I've been blessed with him and my internal medicine doctor.  They would do absolutely anything for me. 

I have decided to not switch and stick with Gleevec.  I don't really care if I get a deeper response if I'm going to have all of these side effects.  I want my quality of life to be good for as long as I can.  I'm thankful those drugs are there though just in case Gleevec fails, but I'm going to stick with it for now. 

Thanks so much!

#11 AmyH


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Posted 23 February 2012 - 03:52 PM

Yah, thats what I'm going to do.  Thanks so much!

#12 WoofWoof


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Posted 23 February 2012 - 09:53 PM

I believe in "dancing with the one that brung ya". If you're doing well then don't change just for changes' sake.

I have cancer but it doesn't have me

#13 Guest_billronm_*

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Posted 23 February 2012 - 10:38 PM

Hi Amy,

   I also believe you made the right choice. And if it ain't broke don't fix it. I was on Gleevac over 3 years and the gi issues were really hard on me, so I finally convinced my onc to switch meds, he agreed and wanted to put me on Tasigma I came right out and told him I won't take Tasigma, I have 2 other health problems and I'm on other meds also, I try to space them apart as much as possible. So trying to fit T in with that schedule was hopeless for me. He put me on Sprycel over a year ago I have a few side-effects but nothing I can't handle, so I'm staying with it.

And as Forrest Gump would say, and that is all I have to say about that!      Sincerely Billie

#14 pamsouth



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Posted 24 February 2012 - 12:37 AM

Call Me Lucky, 

I couldn't have said it better.  I have been on Gleevec since 2006.  My previous Onc had been on my back, for the last year about the newer - greater (much more expensive, longer patent) TKI's.

Her words, "quit G for two weeks, do an EKG, switch to Tasigna, and it will be a piece of cake."  Like to see her try it and tell me what a piece of cake it was!  This led to a bit of heavy discussion back and forth, that I was not going to win.  The onc main reason was a better newer better drug. (newer does not necessarily mean better!!! We are guinea pigs the way it is, hate to say, but I think most would agree)  My FISH WAS 96 PERCENT NORMAL, CBC'S ARE ALWAYS GOOD!  However the last couple of PCR were strange, with an upward trend, then a week later another PCR, that drop back down to zero and 12  percent.  I called the lab (by blood labs are sent from Indiana to New Jersey.) said they had changed to the International scale, yep that explains the problem, no different on the  CML just the interpretation of the lab.  The onc kept saying these PCR lab have a lot of room for error and yet she was insisting change, change, change, based on what she kept saying she, "didn't think the PCR was reliable, magnified over and over, lots of room for error" those were her words. I would say CBC good, Fish Good I am not switching, but everyweek the office would call and that onc  wanted to review the same thing, change, getting no where, except STRESSED.  I refused to go back to her and that was last October 2011.

I went for a second opinion Nov 2011.  The new onc said he did not necessarily go by guidelines, you know the one size fits all.  He also said some patients go off for aTKI for a year and usually elect to go back on some TKI.  I think perhaps they chose to go off so they can recoup from the toxicity of the drugs and feel normal.

Also the previous onc said there was no where close by to send my labs to run the PCR.  However my new onc is 15 miles away and they do all their labs there, as they are attached to the hospital, etc.  What the previous onc should have siad there are no labs close by that she has rights or is contracted to. 

Yes my insurance gives me grief every year about whether or not they will approve the Gleevec and how rocky the world economy is.  Our insurance deductible, etc go up ever year.  Gleevec will become Generic much sooner then the others.  Why would I change.

I am so glad the pressure from my previous onc, of change to Tasigna, sent me to this site, change as she said  "a piece of cake" how does she know that, perhaps she would like to down a few TKI's.   Besides the new oncologist is a group of leukemia specialist.  She is a stand along onc that has way to many patients for one doctor, I would not be surprised if I was her only CML patient.

I think the drug companies put a lot of pressure especially on those that have insurance to switch to the newer drugs.  For those without insurance the drug company may be picking up the tab.  But we all pay somewhere.  I raises the rest of everyone insurance rates up, so if it not's necessary why suffer thru the perhaps the demons of another drug, which could be better but could be worst.  Why at age 64 but myself thru all of that, unless as a last resort. So maybe a doctor gets some kind of feather in their cap or perhaps some perks.  I would wager then MONEY PLAY A HUGE FACTOR!!

I don't need a new outfit to make me feel better.

Anyhow my hold up now of returning to the new oncologist is the billing issues.  The first bill was turned down by my insurance the oncologist billing refiled and corrected the codes, The insurance kicked it out as a duplicate.  I happened to call the insurance and ask the hold up, she said yep kicked out as duplicate I asked her to checked the codes, yep codes is correct she will send it back to be reproccessed which blue cross has another 30 days.  Meanwhile, I take my Gleevec everyday.  I am doing well, except I get a little tried depending on how much I am stressed, etc.  I do have chronic pain, which is not  leaving me regardless of what drug I'm on.  So I will just wait on the insurance to take its sweet time in paying the bill.  Then once it goes thru and I make it to my next appointment I am to remind the nurse to use the primary code of ____ so maybe if it is done right the first time it will not take me 3 months to get it paid.  However I have been playing the insurance game for 6 1/2 years so why would it change now. 

Staying on Gleevec.  PamSouth


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