5 replies to this topic

[kimw]

I am new to this board.  I was diagnosed 03/08/12 and was put on 300 mg Tasigna twice a day immediately.  I have had very good results.  Went from WBC of 251k to 26k in first 30 days.  My Dr. was impressed.  I have read all of the literature I can find regarding side effects and I am experiencing one that even Novartis told my Dr. they have had no reports of.  I have completely lost my sense of smell.  After I was on Tasigna approx. a month I noticed that I wasn't really tasting my food. I took me a couple of weeks to realize the reason I couldn't taste very well was because I couldn't smell a thing.  I told my Dr. and he looked at me like I was crazy.  when I went back in last month, I told him again that I cannot smell a thing.  He had his nurse contact Novartis and they said the had no record of this complaint before.  He sent me to an Ear/Nose/Throat specialist who did a CT scan of my sinus cavity and he said all looked very good and clear.  Nothing there to interfere with my ability to smell.  I still cannot smell a thing.  Can't even smell my perfume when I spray it on my neck.  My house could be burning down around me and I can't smell the smoke.  No fun to go into our great Texas BBQ joints anymore.  Can't smell that wonderful smoky smell.  Just wondering if anyone else has experienced this.  Also experiencing major hair loss after about the 3rd month, and very dry skin.  Some depression too, but I don't know if that is from the medication, or just struggling to deal with this illness. 

Thanks for any feedback you can send my way.

Kim

[Trey]

That is the first time I have heard someone discuss loss of smell, although loss of taste is a side effect for some people using TKI drugs.  Overall, the linings of the mouth and nose are very close relatives to the skin.  Tasigna has a definite effect on the skin for many people, so this could be an issue related to the effect of Tasigna on skin and related types of cells. 

Have the Onc check you for low thyroid function, which can be caused by TKI drugs, and can cause loss of smell.

Depression can be a side effect of both TKI drugs and loss of smell (due to its sentimental role in our lives).  It can also be a result of the diagnosis and the stress involved.  It is sometimes hard to sort out what causes what, the CML or the drug. 

[ChrisC]

Hi Kim,

While I have no experience with using Tasigna, I did lose my sense of smell for awhile some years ago, prior to CML. My mom read an article that mentioned taking zinc to improve ones sense of smell, so I took a zinc supplement and rather quickly I could smell things again. After a couple of months I stopped taking it, and my sense of smell hasn't diminished through the years.

Zinc is one of the suggestions mentioned for improving sense of smell here: http://www.wikihow.c...-Sense-of-Smell

Of course, your doctor can help you best in finding a solution, if you have a good doctor.

Good luck! Enjoying food smells and tastes are a wonderful part of life. ?

ChrisC

[Lori's okay]

Hi Kim,

I was dx 10/11, on T since 12/11. 

I still have my sense of smell but have mentioned to my husband several times that I am frequently mis-identifying smells.  It's very odd, the sense may be a little magnified but I get the smells wrong.  Never had anything like this before. 

Dry skin, a little depression, yep, those too!  I'm sorry to hear of this challenge for you, that's a difficult one!

I am on a 3/4 dose:  150mg in am and 300mg in pm. My side effects are far less on the 3/4 dose.  My PCR is still dropping, I just hope it is responding fast enough for a good response.

Good luck to you. 

Lori

[mariebow]

  Sorry that you have lost your sense of smell.  Some of us have experienced very dry skin, that is wrinkled and somewhat on here said, like crepe paper, and that is exactly what it it like.  I have begun to itch on my face and scalp now.  I have complained to my onc and fp about reactions and side effects, but they say that they do not think that it is the Tasigna.   I have had problems with rib soreness and muscles for over three months, that at times that all I can say is that it is crippling, I get better a few days and can go, and then after about a week or so, I get very sore and have a lot of discomfort, I still cannot bend all the way down, and my grandkids help me around the house, I told this to my onc, who did not really think the drug had anything to do with me having so much trouble. but he did say that if it continues after this month, he will take me off tasigna for a while, and I am not to keen on that, as I am already on half a dose already, and will see what my counts are at the end of this month.   I think that there more side effects that what is known about, probably because the testing of the tki's was not enough.  I hope that you will get your sense of taste back.

[Pin]

My sense of smell was dramatically reduced after starting Gleevec, but after a few months I didn't notice it anymore - not sure if it was because I adjusted to the difference or my sense of smell just came back? I also am suffering from very dry skin, it is worse in winter. I'm using some chemist 'no soap' body wash and moisturiser to help with this. I hope things improve for you soon - it is very overwhelming in the beginning, but it will get better with time