20 replies to this topic

[cam_kris]

Hi

first of all, I really dont know what i am doing, I have tried to post things before with no response, I am hoping I am in the

right place now,  I have CML and was diagosed March 26th, have been on Tasigna since April 18th - all has been going

very well with labs and so forth and now

I just got back from the Dr, and now she tells me i have high liver enzymes, I have not had any kind of liver enzymes problems at all

I have been on Tasigna for about 2.5 months.  Has anyone else have had this problem?

I have not had a drink of alcohol since this nightmare has began.  I have not taken any over the counter meds.  I have tried to do everything

right.  It is just strange that this entire time everything is fine and alll of the sudden  this.

This CML is scary enough with out worring everytime you go to the dr.  I just hope it is a slight side effect from the tasigna and will subside

next week, I have to go back for labs Monday then thursday then the following tuesday. 

I worry about anything and everything, hoping that this is just a off day of labs and back to normal on monday

anyone have insite on this?

Thank!!

[Susan61]

Hi:  You did come to the right place, and you do sound confused and upset with what is going on.  See what your new lab tests show.  I do not want to suggest what your doctor might do, because she probably does not know herself until she sees how your labs are going.  Try to keep in mind that this type of Leukemia is very treatable.  There are other TKI drugs they can put you on if this one is not the right one for  you.  When Gleevec which was the first TKI drug of choice came into trial its all we had, but now that so much is known about how to treat this type of Leukemia there are other choices for you.  I cannot say much about Tasigna, as I have been on Gleevec for 11 years.  I am sure someone else can give you more information.  You did not say what dose your on.  There is always the possibility of cutting back your dose also.

    The waiting is usually worse than the problem itself.  We get ourselves so worked up before we see what the solution is.  Please share a little bit about yourself with us.  We have a good group here, and always someone to give you the support you need or an answer to a question.  Welcome to a Club nobody wants to join.

Susan

[cam_kris]

Hi Susan!

Thank you so much for your response!!  I am on 300mg twice a day.  I was going to start on Gleevec but my Dr really wanted me on Tasigna, so  that is what I did.  after being on Tasigna for about  a week

I got a horrible rash, that turned in to welts, it was horrible, but, after rash meds, and about two weeks later the rash is gone but my face still has some bumps an red marks.  but i can handle that.  I had been taking

estrogen which he took me off asap.  so the hot flashes have been horrible.  Now he put me on Bupropion, i took one a day for two weeks and then two a day at 300mg.  I have been on it for about a month and i could

just as well take M & M's.  the hotflashes are worse now then ever, but...need to give it a chance. as now she tells me it could take up to two months to kick in.  I am a 54 year old women that just bought a business last year, and

now i am so tired, i only work in the am and that is about it.  i play out easy.  thank goodnes i have great help!  When i was diagnosed, I felt like my world stopped and it was over, i went to the dr with a lump and a black and

blue mark around it and with in an hour,I was told my WBC was 125,000,  I have luekemia, and i was on my way to the cancer center 2.5 hours away,when i got to roger maris they told me my count was 183,000.   they didnt give me a a lot of hope, i was put in isolation room on the cancer floor hooked me up to alot of stuff, i cried for two days, they told me i had less then 1% chance it was chronic,  and told me i had to be strong and greeve and i would be in the hospital for at least 6 - 8 weeks!  I felt like a baseball bat hit me in the face!! they took a bone marrow the next day and it came back chronic.  My family and I cried harder, such a relief, as i could go home.  the best words i have ever heard in my life.  needless to say, it is the scariest road i have ever been on.  reading everyones posts gives me alot of hope, my dr did tell me that this was not a cureable disease, but can be contained.  but everytime i get a bump, bruise or a pain somewhere it scares me to death. that day of my diagnoses took something out of me, i hope i can get back, thank you so much for listening to me, hope to keep in touch with you.!!

[Susan61]

Hi:  Sounds like they scared you more than support you from the point of your diagnosis to going through the BMB etc.

Right now the only cure for CML is a BMT, and there is no guarantee that it will work for everyone.  They do not encourage a BMT like years ago now that we have something as easy as a pill that can give us a long life.

     Everything your feeling is what we have all felt.  When I was diagnosed I did shots everyday of Interferon, which was all they could offer me back in 98.  It did not work for me, and I could go on and on with how I got to wait for the clinical trial for the Gleevec.

    I am glad you feel comfortable talking about all this.  Its great to have a supportive family, because thats how I got through it.  I was 51 when I was diagnosed, and my family were all there for me.  I will be married 42 years this Oct., and its been rough on my husband and daughter with a lot of what went on with me.  I still get a lot of side effects, but they are tolerable.

   I would advise to stay off the Estrogen.  When I went through Menpause and all the hot flashes I just got through it.

Some people get it worse than others, but I refused to take anything. Please let us know how your test results come back, and how your plan of treatment is going.  I will talk to you again.

Susan

[hannibellemo]

I don't believe you said how high your liver enzymes were; we're talking about ALT and AST. Generally if they aren't above 100 the doctor just yawns. I had very high enzymes on Gleevec and had to stop taking it; but we're talking in the 1500 range.

Wow, you did go through a ridiculous time when you were diagnosed, there was no reason for them to scare you like that. It's the blast count in the bone marrow that determines the phase, not the WBC count, anyway.

Anyway, we can help you more if you give us specific numbers not just that they're 'high' - that means different things to different people.

Welcome to the board and good luck,

Pat

[cam_kris]

Hi Pat, thank you so much for replying to my message!!   Yes, they did scare the heck out of me and I am having a hard time getting over it, i was told that i was going to spend at least 6-8 weeks in isolation room going through chemo, radiation and whatever else goes along with it.  that i had less then 1% chance of it being chronic. talk about being scared! so now, everytime something is out of the norm, i worry so very much, but how can i not?  My AST is 51 and my ALT is 108  a week before that my AST was 27 and my ALT was 55 and has been that way since day 1.  My oncologest called me and wants me to have labs monday, thursday and Tuesday.  I have not had a drink of alcohol since i received my diagnoses, and i have not taken anything over the counter, so why would it all of the sudden jump like this, my dr must be concerned for me to go back for labs so much in such a short time.  so naturally when they show concern, I really get very concerned.  I hope you can  shed some light on this. Thank you for your response!!  Kris

[Happycat]

Kris, 

Hello and welcome!  I know what you mean about getting the big scare at dx. The local hematologist I saw told me my blood smear looked like I had APML, and since I was bruising in a spectacular fashion, he told me it could kill me in a couple of days if not treated aggressively. So he sent me off to a hospital in Boston, had the same isolation treatment, etc. everyone thought I was at a crisis point because of the easy bruising and the blood smear. However, it turned out the huge left shift was due to a cortisone shot I had for neck pain, and the bruising was a combination of CML, ibuprofen, and cortisone. So within 24 h, I was confirmed as a CML patient. But they sure did scare the heck out of me for a day or two!

Anyway, after going through that, I was pretty freaked out for awhile, wondering if my CML was some weird variant strain, etc. I finally got myself calmed down a bit after the first 4-6 months, but it took time. I suspect it will take you time to adjust as well.

Regarding the elevated liver enzymes, some drugs can do that, which is why they are checking them. I don't know enough about it, so I can't say if it is always a drug thing, or possibly related to a virus, etc. 

I hope you'll be feeling better and calmer soon. Ask your doctor what other factors could lead to high liver enzymes.

HTH,

Traci

[CallMeLucky]

Tasigna is known to cause elevated liver enzymes.  It usually resolve and it is not uncommon for the patient to take a break and then resume again without it recurring.  It is not something you did, it is just the way the body reacts to the drug.  It should not impact your ability to take it long term and if it turns out that you are one of the few who cannot tolerate Tasigna, they will just switch you to another drug, either Sprycel or Gleevec.  I don't mean to sound flippant but we are very fortunate to have multiple treatment options.

You went through a real trauma with dx, worse than some others, you should reach out to a trauma counselor and consider having a few sessions to talk through it, sometimes that can help a lot.  I know you can't imagine it now, but somewhere down the road you will start to feel better and not as frightened as you are now.  It will not be like it was before, but it will be much better than it is now.  I'm two years post dx, my CML is under control and I am living a fairly normal life.  Give it time, it will get better.

[cam_kris]

Hi CallMeLucky!

Thank you so much for writing back, my oncologist told me that if i start on Tasigna, I cannot go back to Sprycel or Gleevec.   He told me that if i started with Sprycel or Gleevec

I could change but not the other way around, i guess that is why everything freaks me out so. I understood it as if Tasigna doesnt work for me, I am up a creek!

if this is not true, wondering why he would tell me that!  This experience has taken 20 years off my life, (no joking) I look it too.  I had to wait 8 days before i knew for sure

it was 100% chronic, and those were the longest 8 days of my life.  just waiting for the news if it was chronic or acute, i cleaned my house getting rid of stuff i havent used, old clothes,

closets and etc. just because i didnt want my husband to go through that if i died.  I am glad i did now as for it is something i have been putting off for a very long time!

I can at anytime remember those two days and just start crying.  they really scared me to death and they scared

my sister and husband too, my sister is the same way i am,  she had to make all the calls and console everyone and be my rock as for my husband was a wreck as well because  we were told the absolute worst, 

I agree with you that i maybe should talk to someone.  because this is not living a so called "normal Life" with CML like i hear everyone talking about.

thank  you again for your veiws!!  I really apprecate it!!  and I sure hope you are right on the Meds!!  It would take a lot of worry off my shoulders!!

[Sneezy12]

Some Oncologists are completly stupid and ill informed. Beware! Frank

[0vercast]

What he told you isn't true about how you can't switch from Tasigna to any other TKI drug.  Some docs use Tasigna as a fist-line treatment.  They wouldn't do this if doing so backed you into a corner right off the bat and limited your options.

[Trey]

You need a new Onc. 

A patient can always return to one of the drugs as long as the drug was effective.  Side effects are a completely different issue, and do not negate returning to a drug, especially at a lower dosage.

Often a drug break, and maybe even a lower dosage can fix the ALT/AST issues.  Also, they do not usually mean that your liver has been damaged.  They can simply be drug induced reactions by the body.

Many patients simply need less drug.  You may find that changing to 300mg per day total would work for you and clear up the AST/ALT issues.

You need a new Onc. 

[CallMeLucky]

It is possible you did not hear your doctor correctly, with all the stress it is possible to mix things up.  If your doctor did in fact say that once you take Tasigna you can no longer take any of the other drugs then your doctor is the stupidest Onc I have ever heard of.  If that is in fact what he said then the first question should be "then why did you put my on Tasigna and not try another drug first that would not preclude me from the others".  Of course there would be no answer for that because it just isn't true.  There are numerous people on this board who have switched from Tasigna to another drug.  I have also had the conversation with my doctor, who is one of the authors of the NCCN guidelines for treating CML.  I am currently on Gleevec, she has already told me if I switch she would switch me to Tasigna unless I had a mutation that was known to not work well with Tasigna.  She then said if I needed to switch down the road I could go to Sprycel, so I don't know what your doctor is talking about.  Sadly like any other profession there are good and bad.  Very sadly when a doctor is not so good there could be really bad repercussions.  I would suggest getting a second opinion or at least having a clariying conversation with your doctor.  As has been mentioned to you, not only is switching an option but you can also start with a reduced dosage.  Of course I don't think I would do that with your doctor.  Better to go see a CML specialist for a second opinion and then go from there.

Let everyone know where you are located and you will usually get suggestions for a good doctor in your area.

Try not to feel so overwhelmed, but know that your reaction is completely normal.  When I was diagnosed I called my lawyer within a few days and went in to review my will.  Nothing wrong with getting your house in order, you never know when that bus is coming around the corner, but as someone on this board told me when I was diagnosed, I wouldn't recommend you stop contributing to your 401K.

[LLsurfer5@gmail.com]

Kris:

I agree with Frank- some oncologists are just mis informed and stupid. Trye is right, get another ONC if you dont like what you are hearing or may not be getting your questions answered clearly and concisely. CML patients are the lucky ones; we have three targeted treatments now and all are FDA approved. I know one girl that started with Sprycel, lasted 10 months, stopped responding to that and now has been on Tasigna for one and one half years.

Don't freak out. What you are feeling is normal but the anxiety will not help your body heal.

Stay strong and get yourself informated on well known websites; dont' go astry and read blogs about the unknowns; now that will scare the bee jee bee's out of you; stick to LLS, American Cancer Society, WEBMD and ASH (American Society of Hematologists)

Laurie

[cam_kris]

HI CallMeLucky,  No, it is not possible that I heard wrong because my husband and sister were with me and heard the very same thing.actually, that is why it took so long for me to decide to go on Tasigna or not, he even told me that if I felt i couldnt afford it down the road not to go on it because i cant switch.  but he said it was the best out there and he felt it was the best for me.

i live in North Dakota

the mayo clinic is about 500 miles from me, 

today i had my blood work done and my last results were:  ALT  108       AST 51         today they were  ALT 46      AST    102      so they did go down some, and i am very happy for that!  My primary dr told me today that with the tasigna  it will change my blood work, as it all goes through the liver, and that is alot of chemical going through my system.  and that she isnt that concerned with these numbers.  So that makes me feel lot better.

I love the part where you said, I wouldnt recommend stop contributing to your 401K 

thank you all so much for all of your responses, I truly appreciate it and seriously, i am feeling much better about everything.  it is really nice to hear other peoples opinions.

[CallMeLucky]

I am flabbergasted at your Oncs assessment of Tasigna in relation to other TKI drugs.  I've never heard anyone say anything even remotely close.  It sounds like a bit of a hike, but I would make the trip to Mayo.  You don't have to transfer your care there, just call them, explain your situation and tell them you want to see a CML specialist for a second opinion.  When you are there, you can ask the specialist if they can recommend anyone locally for you to work with.  Most people have a local oncologist to run their labs and check them out and they go see the specialist once or twice a year.

Good that the liver enzymes are coming down, although not surprising, Tasigna is strong and it can hit hard, for most they get used to it and when they go back on the levels stay in acceptable range.  If not, I wouldn't fear, there are other options. regardless of what you have been told.

You may want to read this, although it is a bit technical, perhaps your doctor should read it as well

The use of nilotinib or dasatinib after failure to 2 prior tyrosine kinase inhibitors: long term follow-up

http://bloodjournal....0/4361.full.pdf

"With the availability of imatinib, nilotinib, and dasatinib, a

scenario seen with increasing frequency is that of patients who

have failed imatinib and one of the second-generation TKIs. The

other second-generation TKIs are usually considered viable alternatives

for therapy, and preliminary results suggest that some patients

may indeed respond to a second-generation TKI used as third-line

therapy.15,16 However, the long-term benefit of such an approach is

largely unknown. In this study, we report the response rates and

long-term results of using a second-generation TKI after failure to

imatinib and another second-generation TKI."

"Withthe availability of 2 of these agents, nilotinib and dasatinib, it has

become an increasingly common practice to use one of these agents

when patients have failed imatinib and the other second-generation

TKI. Early data have suggested that this strategy may be of benefit

to some patients."

"Another study reported a hematologic and

cytogenetic response rate of 57% and 30%, respectively, among

23 patients with CML in all phases treated with dasatinib after

having failed imatinib and nilotinib"

A couple of things to note

1) nilotinib is the generic name for Tasigna

2) dasatinib is the generic name for Sprycel

3) TKI is a Tyrosine Kinase Inhibitor, which is the class of drugs we take.  Gleevec, Tasigna, and Sprycel are all TKI drugs.

4) This study does not take into account bosutinib and ponatinib.  Bosutinib and ponatinib are trial drugs that are going up for FDA approval.  Both drugs are expected to be on the market in the next year or two. I assure you people who fail Tasigna will be prescribed other agents.

Best of luck

[cam_kris]

wow!!! thank you so much for that information!!  very interesting and am I every happy to see that!!!  I am going to take this to my Onco next month.  I had my blood drawn again today, and liver enzyemes went up a bit,  ast 54  Alt 111.  my regular dr says no worries, it is bound to bounce around with what i am putting in my system.  i really would like to see it go down, but just have to wait and see.  Take care and Thanks again!

again, just hoping this is the norm and they will go back to normal in a abit.I have to go back for labs again on tuesday. 

[Marnie]

Just a point of semantics, Lucky.  There is no generic for any of the TKIs (yet).  I assume the correct wordage is "trade name" rather than "generic."

[Susan61]

Hi:  I already responded to your question when you first posted, and I see your getting a lot of good advice.  Like Billie said your doctor works for you, and not you for him.  You have every right to get a second or even third opinion.

I was seeing a great Oncologist from the time I was diagnosed.  He retired, and I just automatically went to see the doctor who took over his practice.  One visit, and I knew I was not going back.  I did not say a word to him,  When I left I told the receptionist I would call to make my appointment.  I went to see someone else, and brought my records with me.  I told her everything I just went through, and she agreed with my plan of treatment from my first Oncologist and has proceeded from that point.  I never even gave the idiot that I saw the time of day to let him know he was done.

His office never even called ask where I was.

    I always keep copies of every single test or whatever they do.  When I leave the office I ask for a copy for my own records.  When I went to see the new doctor, she said she had no need to even request anything from the doctor I just left.  Keep your own file on your health so you never have to go searching for information when you need it.

    I hope you get some straight answers very soon.

Susan