13 replies to this topic

[5tigercubs]

I was dx Dec 2, 2010 with CML. I started with Tasigna and was a zombie and i cant remember the other side effects but the doc lowered the dose each week for 3 weeks i think til i was taking 150 mg 2x a day and then i had qt's so she stopped it for a week and then started sprycel 100mg 1x a day. before I go into side effects I want to say my labs went from 97 to mid 30's on tasigna in the few weeks.

   on sprycel I had one migraine for the 7days i took the med and then was admitted for 48 hr obsv. for qt interval which straightened out the 2nd day off sprycel.

Off for 10 days and then office trial at 50 mg sprycel. had left side chest pain and freezing sensation in chest  throughout left arm and tightness in throat. that was last dose.

doc is now giving me another week off and then starting gleevec but after reading through here i am freaking out.' sounds like gleevec is usually first.

     I am also on coumadin and topomax from more recent hosp stay.

From reading through theses boards it shows that I am not taking the bull by the horns to start and need to be more involved in my care. I had no clue the lab results were open to me. please bear with me, my focus and and pretty much everything connected to it are off kilter. thanks

HELP....?

[jwbwater]

Don't assume Gleevec won't work for you.  Most people here started on Gleevec because they were diagnosed long before you were and starting on Tasigna or Sprycel wasn't an option for them.  In addition since QT interval prolongation seems to be your limiting issue gleevec may be just the right choice since not many people report heart related side effects on Gleevec.  I myself took 400 mg/day of Gleevec for 11 months and my only semi-heart related symptom was mild anemia (low red blood count) which caused me some mild chest pain for a few weeks and then stopped.   I did take 800 mg/day for about a week though and at that dose I had heart palpitations (pounding heart beat) so if I were you I'd look to start Gleevec at 400 mg/day or less.  Good luck and let us know how it goes.    

[5tigercubs]

thanks. nice to be ale to take a good deep breath. she is starting at the lowest allowable doseage and titrating up. i forgot to add in my post that had to stop taking anxiety meds to be able to take treatments. i scare too easy at times.

[Trey]

The best drug is the one that works well enough with minimal side effects.  That "minimal" is a matter of degree, and higher than we might accept for other less serious conditions.  Gleevec may be kinder to you while also being effective enough.  Time will tell.  You can always go back to the other drugs some day, and Gleevec may de-sensitize your body to them to some degree.

[simone4]

Hi tigercubs.  Sorry to hear you have had such a horrible time

with the 2 TKI's. I take Gleevec and I also take Ativan (anti-anxiety

drug). I was not aware that there was a problem with that, and

I am not sure that there is. If you need the drug for your anxiety,

I would ask the doctor to explain why not.  No one should have

to suffer while going thru this new diagnosis.

Good luck to you.

Simone

By the way, anti-anxiety drugs help us with the

cognitive issues, I think.  Maybe you could focus

again if you were allowed small dosages .

[5tigercubs]

I was taking celexa for anxiety and that combined with either tasigna or sprycel raises the risk for prolonged qt if one is proned to it like i was. once i was off of it for a while i had been started on the topomax for migraine control and i think that is where some of the cognitive slowness is stemming. its so hard to tell and its only been 2 weeks for this med but its really nice to have the past few days without any head pain. the doc will let me take clonapin i just havent started yet. was hoping to get used to the topomax first.

Thanks everyone.

[5tigercubs]

Trey the doc and i are both willing to try tasigna again if for any reason gleevec doesnt work out but she says sprycel is a no-go. then its off to a more specialized hospital. I love her and the center she is in. i want this to work. i have labs and ekg's 2-3 times a week. sounds like i may be able to knock off the ekgs on the gleevec.

[cousineg]

Here is an interesting link:   New lab test could identify imatinib resistance , July 2010, Sciences News

Is this test available now in US or Canada?

[CallMeLucky]

Gleevec is historically been the first line drug, starting dose is 400mg per day.  Gleevec is a good drug that has saved many lives.  The new drugs are great too, but each person is unique and what works right for one may not work best for another.  You should do fine on Gleevec, it might take a little longer to get the optimal response, but as long as you are improving and your quality of life is good, then you can keep at it for a long time.

best of luck

[5tigercubs]

Thanks, I'm calming down a lot. it helps to have people with experience to give feedback. that link for the test was pretty amazing.

[5tigercubs]

So my doc is letting me do a 3-day wean off the topomax and re-start the clonapin for anxiety. she moved the gleevec start date to monday so i have a chance to clear my system of the tope. it wil be nice to almost know what is cml and what is side effect without that med making me so mentally sluggish. hope the migraines dont come back right away but i will worry about that later.

my coumadin level is finally theraputic at 10 mg's a day and no more arixtra shots. full clotting work up next week and another chest scan n ext month to see how this clot is or if its gone.

i still dont have actual numbers bood doc ran more tests and said she did another cml test to make sure it wasnt a false positive because the little meds i have taken have kicked but and kept it back so dhe wanted to be sure and it is def cml. there is very little there at moment. counts look pretty good. my symptoms are telling her more i guess. and she wants to nip it in the bud before it needs to be worked at hard.

so i am sicker from meds than cml which is ok. right? cuz eventually i will get used to the meds and the meds are whats going to keep the cml from making me really sick.

[lehrerin]

A Coumadin dose of 10mg per day is VERY HIGH.........don't know what you are taking it for, but most times it is to achieve an INR between 2-3.......please be sure to have your pt/inr tested again very soon (in a few days at the very longest) and call your doctor asap to verify the dosage of Coumadin.   Remember, too, that Gleevec can cause your platelets to drop, which will affect your clotting times.

[5tigercubs]

the doc say it is a pretty high dose but if it is not this then i have to do 5 mg coumadin at night and 5 mg arixtra shot in a.m. to be therapeutic. i am tested 2-3 times a week.  i was tested thursday night and am 2.8. they want me 2.5 -3. i am taking it because they found a blood clot in my left lung 2 weeks ago. this is one of the few meds in my life i have ever been resistant to and not allergic or sensitive. we are still open to going back to the shots it it ends up being safer/healthier. thanks so much for your input. every bit of info and life experience you all give is so helpful.

  topomax note: I am noticing some clearing in my brain and raise in general energy and i am not totally off yet. it will be comforting to sort CML from side effects before starting gleevec monday.