Jump to content


Photo

Side Effects of Tasigna


  • Please log in to reply
8 replies to this topic

#1 donkatking

donkatking

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 July 2012 - 03:38 AM

I have noticed hair loss and yes my hair is very much changed now.  My wife describes it now as a brillo pad.  I have been feeling very tired and ended up at my PCP. He ran some bloodwork and ended up sending me to a spacialist for hyperparathyroidism.  They ran more tests and founf the the parathroid looks to be ok but my vitamin d level was low.  I did explain I take Tasigna.  Well they have me taking a big dose of vitiman d once a week and I will see the specialist in 6 weeks and have somemore blood tests.  Very Confusing.  I have alot of trouble sleeping at night and just feel so tired and it's hard to concentrate at work.  I now see my onc once every 3 months and will see him again in a few weeks.  I wasn't too impressed on my last visit as I belive he was overtaxed and got me out fast and said they would see me in three months.  They say my blood work is fine and as he says I'm on top of the food chain!!  I just wish I felt better as I have ben taking Tasigna for almost a year and a half now.  Just to have a full week where I felt better would be nice.  Other things I have noticed is things like vision.  Does it also change?  I will be going for my yearly eye exam in a few months. I had another specialist see me that the Onc sent me to for the numbness in my feet.  They prescribed me Gabapentin and for low vitimamin B metanx.  I just quit taking them about a couple months ago as I felt bad and wanted to see if I stopped would I feel better.  I just think it's the Tasigna doing all this.  I will talk all this over with the Onc on my next visit. 

Don King



#2 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 06 July 2012 - 01:32 PM

HI:  I am not on Tasigna, but have been on Gleevec for almost 12 years now.  I have a lot of the same problems as you have.  Years ago my blood work came back with a High Normal Calcium, and a low phosphorous level.  My doctor said that would indicate Parathyroid Problems.  They put me through the Parathyroid Scan to see if I had a tumor on the Parathyroid.  It came back negative, and my PTH numbers still run on the high side. They decided its related to my kidneys. I was also low on Vitamin D.  My Vitamind D level is back up now from taking 1000 IU a day. 

     I am extremely tired all the time, but I am anemic so I just attribute it to that.  I finally figured if I kept trying to find out what was wrong that it would just make me nuts, because everyday is a new adventure being on a TKI.

    I do not think the doctors even know half the time, and thats why they just do their guess work through sending us for tests all the time.  I am happy with being atPCRU, and I guess you cannot have it all.  I was also low on B-12, but have not had that rechecked and I never refilled my pills now that I am thinking of it.

   I know what its like to never feel 100%, and then I know that I am not alone in this.  Hope you start feeling better and get some more energy.

Susan



#3 mariebow

mariebow

    Member

  • Members
  • PipPip
  • 13 posts

Posted 06 July 2012 - 02:27 PM

Does anyone else have issues with face itching and rash.  I know that some people here have had problems with itching and rash, but this is just on my face.



#4 cam_kris

cam_kris

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 July 2012 - 04:36 PM

Hi mariebow,

yes, i just wrote a post about this last night, I have been on tasigna for the last three months now, and after a couple weeks i got a full body rash, it was horrible, but with pills, it all went away

but on my face!!  it itches, and has little bumps, sometimes it burns a bit.  I was wondering if anyone had this and what they are doing for it.  I am tired of calling my onco all the time asking

if i can take this or that.  I was hoping someone else had the same problems but with an answer.  maybe someone on this site has one!!  Good luck to you and if you find anything please

give me a shout ok!

thanks!!



#5 mariebow

mariebow

    Member

  • Members
  • PipPip
  • 13 posts

Posted 06 July 2012 - 05:30 PM

cam_kris     I called my onc today, nurse told me to use some cortizone, and asked if I used something different, I told her no.  she said if it persists, to see my family doctor, it is something that these docs do not suspect side effects with these tki's. I have not had itching on my face and sometimes rash like spots on my face. ugh!



#6 cam_kris

cam_kris

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 July 2012 - 07:31 PM

mariebow, that is very nice of you...thank you so much, i will try that and see what happens!  i guess we can have side effects at any time, i was bummed on that thinking if a person made it through the first

three months like a normal pill you are out of the woods, not true with tasigna.  just hope side effects are short and sweet if we have to have them at all!!



#7 mariebow

mariebow

    Member

  • Members
  • PipPip
  • 13 posts

Posted 06 July 2012 - 07:58 PM

Oh sure!



#8 donkatking

donkatking

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 July 2012 - 08:20 PM

For the itch my PCP gave me Fluocononide which work well on my arms.  It just has an oily feeling which I don't much care for.  For the crotch he prescribed Clottimazole and Betamethasone Dipropionate.  It is a different kind of cream and works really well so far.  I know the cure (Tasigna) is awful and I need it, but for the rest of my life is terrible.  I do have the problem with bumps on my skin and I don't know why. before I was diagnosed with CML and taking Tasigna I had folliculitis and since I started the medication it had pretty much cleared up.  Strange!!  I know without Tasigna I'd most likely be ten toes up but I just wish I had good days.  I'm so tired of starting off my day feeling bad. It's good to know I'm not the only person with these issues.  I wish the PCP and all the spacialists would talk one on one with the ONC.  They are all on the same Hospital computer program and have access to what one another does.  Everytime I go and see someone it's like starting over from scratch and wastes money with the tests they want done especially if what I am going through is just side effects of this drug.        



#9 mariebow

mariebow

    Member

  • Members
  • PipPip
  • 13 posts

Posted 06 July 2012 - 09:42 PM

Right!






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users