8 replies to this topic

[5tigercubs]

I had to stop gleevec after a month or 5 weeks and go back to tasigna this monday. we had slowly worked up tp 200mg twice a day and after one bout of severe allergic reaction i took each dose with 50 mg benadryl. and then had to take a dose in the middle of day as well. The benadryl stopped helping and my throat was closed or felt like it was closed for the whole weekend. Im driving my onc crazy with ridiculous side effects and now allergies to meds. Heck its driving me crazy!

So thursday I start EKG's again and hope that this time there is no QT issue since celexa is out of the picture. Onc thinks that may have been the reason for QT issue first round.

wish me luck!

[GerryL]

Hi 5tc,

I was starting to wonder what was happening with you - hopefully you'll have better luck with the Tasigna this time round.

Gerry

[CallMeLucky]

Best of luck, I hope things start to work out.

I would also suggest that you have your doctor start looking into bosutinib.  Bosutinib is a new TKI drug similar to the three that are approved.  It has been through phase III trials and it will likely be FDA approved soon.  I believe it is available now under compassionate use rules.  Hopefully Tasigna will work for you this time around, but if it doesn't, I think the next logical choice would be to see if bosutinib can work for you.

Best of luck

[Trey]

If the throat swelling is the major "allergic reaction" issue, it is more of an edema (swelling) issue than an allergy.  Both may include swelling of tissues, but edema is more accurate.  The edema in the throat can make it more difficult to swallow.

[5tigercubs]

Trey, I was thinking that at first ,but without the benadryl I also had hives and breathing difficulty (severe) the ER did a full head ,throat and chest Ct with and with out contrast and saw nothing to indicate edima.....so they loaded me up on prednisone and kept me on oxygen for few hours before letting me go. that was almost a week after going to 200mg a day. we went to 400mg daily shortly after that and the hives only came back if I didnt take the ben at the right times...but the throat got consistently worse even with it. I just dont know...

[Trey]

If you are still on several different medications you may want to further explore drug interactions.

[5tigercubs]

I am down to just coumadin (3 more mths) and clonapin 1mg daily as needed for anxiety and now Tasigna but for the past month it was those and G + benadryl. I had even stopped the zophran wich sucked but i thought i should drop anything not absolutely needed. Thanksfor all your help and info. I am going to bring up possible edima at next visit as well.

[GerryL]

Hi 5tc,

I had throat issues - difficulty swallowing, almost felt like I was choking, I had put it down to a side effect of the Gleevec but didn't know exactly why till Trey mentioned edema. I only had it when I was taking my Gleevec at night - fluid retention seemed to be in the eyes and throat. Now I take Gleevec in the morning I get fluid retention round the ankles - the fluid flows down to my ankles now rather than hanging around my head.

Gerry

[Tedsey]

When I had my first blood transfusion, I had an anaphylactic response.  It happens fast.  It is not a prolonged event (ex. feeling for days that your throat is closing up).  In my case, I am probably allergic to a preservative put in donated blood. 

It is horrible when your throat feels tight.  Feeling like you cannot breathe freely is very scary.  I am sorry you are so uncomfortable.  But I thought I could ease your worries a little.  You can rule out a severe allergic reaction, like anyphylaxis.  Best of luck.

Tedsey