32 replies to this topic

[Dina]

Hallo everybody,

I was diognosed a month ago with the CML and I'm taking the Tasigna for two weeks now. I'm 36 years old. All my life I was always healthy.

I had 3 ECG's and 1 Echocardiogram so far and all of them turned out to be normal.

However sometimes I have some funny and weird feeling in my throat it feels a liitle bit bubbly and it lasts only few seconds to a minute. During that funny

feeling in my throat I have decided to check my blood pressure, the blood pressure was normal but the Irregular heart beat indicator came up.

Now I'm really scared and not sure what to do. My docotor keeps telling me that all of my ECG's were normal.

I'm really scared because an irregular heart beat could be one of the serious side effects from taking the Tasigna.

I would appreciate any comment and your opinion on this one.

Thank You So Much Everybody.

[lthouse612]

Hello Dina and welcome to the site...you'll get a lot of help and support here so try to take a deep breath and just take one day at a time with this.  It's overwhelming at times but we're all in this together. There are some very knowledgable people you'll come to know that will always lend a hand in what ever you may be dealing with.  There are so many side affects from the different drug therapies we have and we all react differently, so try not to get to worked up if you don't have too.  I'm currently taking Gleevec so I can't comment on how Tasigna is affecting you but you'll see that others will gladly give you their ideas and suggestions.  You've come to the right place and it's really helped me along when I've needed it most.... some days more than others....  Take care and hang in there!!!

Mark

[Trey]

Having your doc check out your heart (as you already did) was the right thing to do.  Since all seems OK, then there are a few other possibilities we see here.

1) Emotional stress from the diagnosis that has, possibly even at a subliminal level, caused increased anxiety which can affect heart rate and cause palpitations.  If so, you are not alone in those issues.

2) Low blood counts that "thin out" the blood; maybe low WBC, RBC, platelets, or all three.  That can affect blood flow and how the heart pumps it, valve closure, etc.

3) When concentrating on testing the heart, it can cause an anxiety on its own that can show up on the results.  This is especially true when self-testing.

Regarding the "bubbly throat" issue, it is most likely acid reflux, which Tasigna can cause in some people.

Those may not be the only possibilities, but we see those here.  You are not as abnormal as you may think you are.

[Dina]

Thank You guys so much for your fast answers and your warm welcome.

Trey I think you are a correct. Yes I'm under tremendous stress and esspecially I got very nervous when comes the time to take another dose.

When Tasigna arrived to my home there is a huge warning sign about the Heart and QT prologations so I just cant help but wonder:

Should I continue to ignore my palpilations as long as the ECG's continue to stay normal,

or ask for a refferal to see cardiologist to rule out any infrequent irregular heart beats(not at the moment when ECG is performed)?

On the Tasigna website one of the serious side effects are irregular heart beats and that scares me even more.

ECG is a test for QT ptologations/Intervals am I right?

Is there a difference between Intervals and irregular heart beats??

Thank you guys for helping me I really don't know what should I do

[Trey]

Here is a previous discussion that explains QT:

http://community.lls.org/thread/4476

Your doc has checked you out, and has found that you are not "at risk".  You have complied with the warning, so you can move on.  The QT issue applies mainly to those who start out with a QT issue, or take multiple drugs with potential QT issues, usually older people.  This thing is way over-rated and causes far too much anxiety for the miniscule number of heart QT cases that have occurred.

If it were me, I would forget about it.  The stress will do more harm than the drug.

[cousineg]

I took Gleevec (400mg) since June 2005. Before that, I was diagnosed with Atrial Fibrillation. I bought a blood pressure monitor with PC connectivity.  My regular pulse is 64. When the pulse increase to 80, I know that I am in irregular pulse. In my  case, it takes 10 hours to return to a regular pulse with heart medication. I can record the pulse and show to my doctor.

I don't have to pass a ECG everytime when I feel bad. When I started to have extrasystoles (palpitations), I sit on a chair and sometimes I took Ativan to relax. I stay in the chair for at least one hour and after I went to sleep in the bed. If I go directly to bed with extrasystoles, I will start an atrial fibrillation episode.

Your case is very different. If you have a lot of palpitations, ask for a heart event monitor. .May be It will preferable to go to Gleevec if you are always inconfortable. There was a previous discussion at http://community.lls.../message/100171.

There is a link about Tasigna.  I know a woman who takes now Tasigna and do beautiful painting. See CMLer's Portofolio  and relax.

[Dina]

Thanks Trey I really do think its a stress related.

I'm 36 years old and newer had any health issues before.

I'm also in such a big dilemma if I should have started taking the Glivec instead of the Tasigna,

maybe I would be less stresfull with the Glivec since they know more about it then the Tasigna.

As newlydiognosed please tell me your opinion if I made a right choice to start my treatment with the Tasigna first?

[Trey]

There is no wrong decision regarding which drug to start with.  They are all good drugs.  I would personally not be concerned about starting with Tasigna.  But if you are going to insist on worrying about it, and cannot get past your concerns about the issue, then the right thing would be to switch drugs.  If you do switch, you will likely trade one issue for another.

The main reason to stick with Tasigna is that it has been shown to provide faster reduction of leukemic cell counts than Gleevec.  That is why you were started on Tasigna.  If you agree that is important, it would be more reasonable to stay with Tasigna.

[CDW]

Hello Dina,

Firstly - what Trey said. He's a super source of information and very well balanced. Secondly, welcome to the group that nobody really wants to be in - having said that you'll find it a huge source of information and support especially if you have any days where you want to vent frustrations.

I didn't come on this site until about 3mos after diagnosis. I guess i wasn't sure what i was going to find and was happy to listen to my onc and make my own progress. I really should have come on here earlier. I've been in Tasigna for 11mos now and it got me into the PCRU (Philadelphia chromosome undetectable), which is the best possible place for us to be, in ~6mos. As Trey said, Tasigna is more aggressive at getting you to that stage than gleevec, although both have been proven to be effective. I too had some heart palpitations early on, my onc sent me for a further ECG and she was satisfied with what she saw. The palpitations have settled down now.

It is likely you will have some other mild side effects with Tasigna; I have found these to be cyclical with me. they come and go, but, overall i feel pretty good. I'm a strong advocate of Tasigna and am happy to stay on it I was the first patient of my onc to go on Tasigna and am now her 'poster child'. As a healthy, very active 33yo male CML came as a bit of a shock; however, I was running again within 2 months of dx, back at the gym, completed my masters degree this year as well as continuing to work a busy full-time job. I'm not blowing my own trumpet, merely highlighting that you can lead a normal, active life. There are days when i get tired and like to blob on the couch and i take those in my stride.

Good luck on your journey - things will be a lot clearer and you will feel a lot more comfortable in the coming months as you adjust to your new normal.

Chris

[CallMeLucky]

I went through the palpitations on Gleevec.  Had full cardio work up and everything was fine.  Most likely stress related.  They have settled down for the most part.  It is important to be prudent and follow up on these things, but it is most likely stress and if the test results show no issue then you should turn focus to ways to deal with trauma of the diagnosis.  I would avoid getting on anti-depressants too quickly.  Some people need them and that is fine, but give yourself a chance to work it out first.  If you can't get back to your somewhat normal life after treatment has begun and things are looking okay, then maybe you go that route.  For now you may want to reach out and talk to a counselor who specializes in this area to help you sort out your thoughts and feelings about your situation.

Best of luck.

[Dina]

This my 3rd week  with the Tasigna already. I do have to admit that besides my infrequent palpilations and

irregular heart beats that show on my blood pressure monitor which lasts only few seconds to a minute, I really do feel just fine. I don't have any

bone aches, or any pain really. I feel like my myself except the fear of not knowing what is going to happen next.

I was also very active, I love to exersice and used go to the gym. My docotor thinks right know I can only do some

moderate exercise and not the full scale yet. Not sure why is that the case.

Trey:

If we start with the Tasigna first and lets say the drug stops working in the future,is it possible to switch to Glivec???

Can less effective drug do the same job?

As newlydiognosed I wonder how long can someone live with the CML, what is the life excectancy???

Thank So Much Everybody!

[CallMeLucky]

There are people who started with Tasigna and switched to Gleevec.  It is not as common but it is reasonable.  It all depends on why you need to stop taking Tasigna.  Since Tasigna and Gleevec are more similar than Sprycel, depending on the reason for stopping Tasigna, the doctor may opt to go for Sprycel.  I recall someone on this board started with Tasigna or Sprycel, then switched to the other and then eventually went to Gleevec, which I believe turned out to be the right drug for them.   So you just don't know until you start using them.  In general Tasigna is a really good drug and as Trey pointed out, it gets people's leukemic count down fast.

[CDW]

Dina,

Out of interest what was your white blood cell count on dx? One reason for you to take it steady with exercise in the first few weeks is the tasigna is getting your blood count down. You may experience fatigue due to low platelet counts - these will come back to normal. I was dx with WBC 108k, tasigna got me down real quick (1-2 weeks) and i undershot down to 2.0k, with low platelets as well. During this time i felt very tired and was borderline anemic. My levels came back to normal soon after.

Trey will likely give you a more comprehensive response on which drugs are available if Tasigna should stop working, but the most important thing is to think positive. At your age and health, there is no reason to think the drugs won't work - I remember I had similar concerns around the same time. And to give you reassurance, researchers are looking at several other alternatives i.e. bosutinib [sp?] Other options are available should things not work out long term.

Focus on remaining positive, believing you can do this and treat your body well i.e. good nutrition, plenty of fluids and regular moderate exercise. As for life expectancy, Susan (who i'm sure will contribute shortly) was one of the first people to start on Gleevec ~13 years ago. Dr Druker, who invented Gleevec, thinks life expectancy should be in the region of 30 years. importantly, that is on today's medications alone - I truly believe I will see a cure (or as near to cure as we can get) in my lifetime and i''ll end up dying of something else at a normal old age.

incidentally, I watched 50/50 this weekend at the cinema - it may still feel a little new for you to see that right now, but there were so many bits i could relate to and me and my wife really enjoyed it.

There is every reason to think positive despite the uncertainty you are currently feeling.

Chris

[Dina]

Thanks "CallMe Lucky" for your respond.

What I was wondering is this: Lets say Tasigna stops to work in the future, like the body get resistant to it.

Can Glivec do the job then??? Can something replace its job that was less effective to begin with.

Its like taking a less stronger medicine for a pain after the strong one.

So down the road do I have only sprycel left as the altenative therapy where would I have two( tasigna and sprycel)

if I have started with the Glivec first?

I hope I make sence.

[Trey]

As Lucky said, people can and do switch back and forth.  When it comes to side effects you can start on one, switch to another, then another, then switch back to a previous one.  No rules there.  Buy if you "failed" one because it simply did not work, then you should generally not go back unless at a higher dosage.

Having said all of that, the Oncs will likely not approve of switching around willy-nilly nolens volens.

Hopefully you are seeing that there are a number of people here who have experienced the palpitations and they have stuck with the drug and are doing better.  As with most things related to these drugs, things generally improve over time.

[CallMeLucky]

I understand what you are saying, but from what I have read and discussed with my doctor and other people with CML is that it doesn't work that way.  Everyone's body is different and no two people react with the drugs the exact same way.  It is important to break apart the two reasons people switch drugs.  One is resistance, the other is tolerance.  So your question talks about resistance (i.e the drug stops controlling the leukemia).  In that case it is conceivable that if you became resistant to Tasigna that Gleevec could work, although it is not highly likely.  Tasigna is a second generation drug similar to Gleevec and the chances are that if you become resistant to Tasigna, likley due to a mutation, I think there is good chance you would be resistant to Gleevec too.  But here's the thing you need to understand, you would have likely been resistant to Gleevec all along.  It's not like you disqualify Gleevec by taking Tasigna.  It is just likely that if you are resistant to Tasigna, there is a good chance you will be resistant to Gleevec too.  So if anything, you are actually saving time this way.

Most of this is a moot conversation because the odds are you will not be resistant to Tasigna.  If you develop resistance to any TKI drug, you should have a mutation analysis done to determine why you became resistant.  Based on that analysis they can determine which drug will work best for you.  In most cases if you failed Tasigna you would go to Sprycel anyway.  Another TKI drug, bosutinib, should be approved for use in the next year or so.  And, another TKI ponatinib, is underway in development and available for compassionate use until it gets approved.

More than likely if you had to switch it would be more a result of side effects than a mutation and in that case, all options are on the table.  Not to mention in all cases there is the option to increase and decrease dosage.  There are plenty of people out there who started on Gleevec 400mg and it didn't work, went to 600mg and it got them under control.  Likewise there are people who could not tolerate Sprycel at the recommended dosage and are currently under control with low dose Sprycel.  So there are lots of options and you shouldn't feel like you have only one life line available to you.

Now I'm going to share with you something a counselor told me, "don't waste your time and energy on things that may never come to pass".  I know how your mind wanders at the beginning trying to figure out all the possible scenarios.  You will gain very little from this except tiring yourself out and worrying about things that will probably never happen.  Know your treatment plan, have an understanding of what the alternatives are should you need them, and then try to let it go and concentrate on your current reality until the time comes that things change and you have to think about other options.  There is a good chance that day will not come!

[Dina]

Yeah I guess I just need to take a deep breath from all the worries.

And yes that's exactly what I was thinking by starting my treatment with Tasigna if I'm disqualifying Glivec in the future.

I was diognosed at age 36 like 5 weeks ago. Every year I do my routine check up just to make sure everything is ok.

The check up I had back in july 2010 was a perfect one, this year had one back in august and they called me the next day.

My WBC were 175,000......and the spleen was slightly enlarged.

After 3 days in the hospitals and all the testing they confirmed my diognosis of

early stages in the chronic phase. For two weeks I was on the Hydrea and for almost 3 weeks now on the Tasigna.

Tasigna is the only medicine I take, I don't have any other issues.

Well I don't have diabities, no cholesterol, no high blood pressure just the leukemia.

Hard to believe isn't it??

[CallMeLucky]

For many it would be hard to believe, for me, it sounds all too familiar.  I was 37 years old (now 38).  In otherwise perfect health, went for my annual physical and everything seemed fine.  My only concern was if my cholesterol was high.  It had been higher for a while and I was exercising and eating better hoping it would come down.  Dr called to tell me I did a great job of getting my cholesterol down, but unfortunately something was wrong with my white blood count, it was 35K.  Went back to repeat and a couple of days later it was 60K.  I went to the oncologist that day and was diagnosed.  My family was shocked, no one would have seen it coming.  We're lucky to have caught it early.  The quicker you get on top of it the better.

Hang in there......

[Dina]

Wow you were almost in my age.

I was always so comitted to my health. Newer drunk or smoked. Excersized regulary.

Always ate healthy, food that are rich in antioxidants, vitamins and things like that.

Ate lots of leafy green vegtables etc...

Today I don't believe it anymore if you eat healthy you will stay healthy.

Some people used to tell me relax, have a drink or two..maybe I overdid it.

The lesson I've learned is that there are NO RULES.

[CallMeLucky]

Reminds me of an episode of Married With Children:

AL BUNDY: C'mon, everybody, family meeting. [they all sit] Now, Peg, I  know you think you're responsible for killing Jim. And yet you have no  guilt of squashing the life out of me, but that's another meeting.  Anyway, what I'm saying is, you didn't kill Jim. Good health killed Jim.  See, he purified his body so completely, that when finally called on to  do so, he couldn't handle the grease and sugar and toxic waste that we  call food. He rendered himself extinct. See, healthy people are like  dinosaurs. They're not fit to survive. Jim's body couldn't handle the  burgers and bonbons and pastry suckin's like real Americans. You see,  Peg, WE are the truly strong.

PEGGY:  You really think so, Al?

AL:     Absolutely. See that cockroach over there?

PEGGY:  [points] That one?

AL:     [points] No, that one. Well, any one of them. You don't see them carrying of a can of Wheat Germ, do you?

KELLY:  Gurm, Dad.

AL:     Thank you, Pumpkin. Anyhow, Peg, let's follow the example  of our friend the cockroach. They were before man, they'll be here  after man. You know why? They eat crap. And I say, if it's good enough  for the cockroach, then it's good enough for my family!

Genetics are genetics, but don't give up on your good health habits, they will help you through this journey.