4 replies to this topic

[tinman1939]

My last post ("Day 1 on Iclusig and I am Still Alive") resonated with some, particularly those who know the history of this TKI (approved by the FDA, withdrawn from the market, then approved again) and the dire warnings associated with its use. Well, it has now been two-and-a-half weeks on Iclusig, and I am still here to chat about it.  That's certainly good news for me, my family and friends.  Of course, I started out at 15mg per day, well below the 45mg per day that some consider to be the normal dose, or even the 30mg per day which would be my goal after a short time on the lower dose.  In the first week on Iclusig,I experienced the requisite chills, fever and overall achiness that many feel when starting up with a new TKI.  My initial thoughts were that this drug was working immediately and I was going to beat CML (started on Gleevec seven years ago, but my BCR/ABL was showing a bad trend the last year, including a mutation; thus the switch to a new TKI).

After eight days of 15mg of Iclusig, and after the chills and fever and achiness subsided, I ramped-up to 30mg per day as my oncologist had recommended. After only three days at the new dosage level, I began to get painful pustules on my face, head and ears. I knew this was bad and not just incredibly painful.  I couldn't even wash my face without experiencing pain.  I went back to the lower 15mg dose.  However, by then, the pustules or welts on my face were so noticeable (I felt ugly) that it took me nearly a half hour each morning just to apply a salve to calm the inflammation and then some cover-up (clearasil tinted), before heading to work. I was disheartened.

So, I scheduled an appointment with my oncologist.  He prescribed methylprednisolone tablets (a form of steroid) and after just a day on them, the inflammation on my face is less red and less noticeable.  The oncologist also said I should continue at the 15mg per day level, as that the toxicity from the higher dosage was intolerable at this point.  I am glad about that.  If my taking 15mg of Iclusig a day can reverse the upward trend of by BCR/ABL ratio, I will consider it an initial success.

There you have it - The good, the bad and the ugly.

Best wishes my CML friends.

Wayne

[Marnie]

Hang in there, Wayne.  Sending good vibes your way.  Hopefully your current dosage will do the trick.

Marnie

[hannibellemo]

Wayne,

I know it's frustrating, but you still maintain your sense of humor and that's important. I mean, if we can't laugh at ourselves, what's left? Pity parties, only help for a little while. Sounds like you have a good plan in place with your onc.

Did you say what the mutation was? That's so unusual after 7 years.

Take care!

Pat

[Happycat]

Ouch!  Sounds like it hurt!  My dh had a bad reaction to an antibiotic, and got really painful, itchy hives all over his body.  Did the doc say it was an allergy reaction, or something else?  Just trying to figure out what would cause the blisters.  I will admit I occasionally get blisters now with gleevec, but usually it's due to something rubbing on my skin as well, so it doesn't crop up on its own.  It just seems to happen more easily now than it ever did before gleevec.

Traci

[jrsboo]

I was on Iclusig for about 5 months.  I had a bizarre side effect that pain was increased 100 fold.  And lucky me, I passed a kidney stone during that time.  By odd, I mean that if I lightly bumped my hip against a chair, I had to take deep breaths and wait for the pain to retreat.  I was also incredibly dehydrated.  So after about 5 months I said that it was worse than Sprycel, and please put me back on S. 

Just a head's up.

Caroline