Jump to content


Photo

Tasigna/Nilotnib Questions


  • Please log in to reply
11 replies to this topic

#1 martha

martha

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 December 2012 - 05:52 PM

Hi, there!! Just looking for some input re: Tasigna. I have sucessfully been on Gleevec for 6 years (600 mgs), with basically no side effects (occasional digestion issues but no biggie.)  However, my pcr numbers have been gradually increasing so my onc team is now recommending Tasigna.  As part of this ramp up to transition/consider tasigna, I had a BMB, more blood labs and was also was referred to a cardiologist for EKGs and an Echocard. The cardio tests were all normal, but my QT intervals are high/normal (443) but the cadriologist and the onc are both in agreement I am eligible to proceed on Tasigna, which is fine (and I"ll have weekly ekgs and more frequent cbc's/labs for a while.) But I have been reading about some horrible side effects on this board about heart palpitations, rashes, and liver damage.  I know these things are listed on the Novartis website as possible serious side effects, but now I am completely, totoally, utterlyl paranoid and afraid.:-(  So here are a couple of questions I'm wondering if another patient can help clarify for me?:

1.)  Is there some research data available on the web that might help me see/understand what percentage of patients actually experience these things? 

2.) Also, the eating schedule is  not a problem for me, but can water or coffee be consumed during the 3 hour window?  I don't want to tempt fate, and am happy to hold off altogether, but it would be nice to be able to have a glass of water or a coffee....thoughts? 

3.)  Is the rash some sort of disfiguring ailment, or more like dry skin?

I meet with my oncologist again in a few days, but in the meanwhile I just thought I would ask here.  Thanks for anyone who replies!! :-)



#2 Sneezy12

Sneezy12

    Advanced Member

  • Members
  • PipPipPip
  • 67 posts
  • LocationMinnesota

Posted 17 December 2012 - 07:12 PM

What were your PCR numbers? Regards, Frank



#3 martha

martha

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 December 2012 - 08:00 PM

Hi!!! *waves* My pcr numbers were 0.013. 



#4 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 17 December 2012 - 08:13 PM

Hi Martha,

I'm still relatively young on tasigna - coming up to 2 months - so I don't have too much experience on it. Looking at your questions

1) You are absolutely right to think of how many people experience these adverse events and the first thing is that reading people's stories on this website is more scary than the average - people who have more significant side effects are more likely to post here. When I was trying to choose between nilotinib and dastinib this was one of the papers I looked at because it talks about common side effects, rather than the really rare ones. (Mind you at the time I was on a different drug and experiencing quite rare side effects... so go figure.)

http://www.sciencedi...544679411001832 I was very happy to notice that the number of side effects on the list and also the rates of incidence were much less than for gleevec.

Also in the prescribing info here: http://www.mycmlcirc...ribing-info.jsp

That is not to down play the crappiness of getting a rare serious side  effect, but I wouldn't freak out too much about the side effects of a  new drug - you did really well on the last one and the odds are you'll  do well on the next one. Anyways the way I look at it is the risk of dying from a side effect are so so much less than the risks from not taking a TKI, close to 100% less.

2) I know for sure that water is fine... I wouldn't do coffee but others might.

3)  A lot of people do get rashes, me included. The paper I referenced said 36% of people get them but <1% are really bad. The minor rashes I've had have been red bumpy rashes, less than the size of my hand and go away after a few days (sometimes with the encouragement of some steroid cream, sometimes by themselves). I had one on my face which I was less than happy about but it was probably only as ugly as the gleevec eyes I had at the start of the year. I have dry skin also but tbh I've always had dry skin just that now it is more dry.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#5 martha

martha

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 December 2012 - 08:18 PM

Thank you, jjg, for your helpful reply!!! I TRULY appreciate it and will review the links you shared.  Thank you, thank you.  :-)



#6 Ray99

Ray99

    New Member

  • Members
  • Pip
  • 9 posts

Posted 17 December 2012 - 08:48 PM

I have been on Tasigna since dx about nine months ago.  The side effects have been pretty minor, including occasional rash and muscle cramp .  In the beginning, my PLT dropped big time, so I have to take a three week break.  CBC has been normal since then.  I have two EKGs and both are OK.

My doctor said that liquid, including coffee is OK during the three hour fast, just no food.

Hope this helps.



#7 martha

martha

    New Member

  • Members
  • Pip
  • 0 posts

Posted 17 December 2012 - 10:27 PM

Thank you, ray99, for sharing such helpful insight!!



#8 Sneezy12

Sneezy12

    Advanced Member

  • Members
  • PipPipPip
  • 67 posts
  • LocationMinnesota

Posted 18 December 2012 - 07:26 AM

Forgive me for playing the "devils advocate", but your PCR level is  by itself completely acceptable ( in the absence of additional prior values ), and not a reason to change from Gleevec. As you know, the values can fluctuate once you achieve a MMR. Regards, Frank



#9 martha

martha

    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 December 2012 - 08:07 AM

Hi, Frank:  Thank you for your response.  Yes, I agree the pcr results are still very low; the onc explained that if the numbers increase by "a log" the standard is to change from gleevec to another drug option. But at present I am still on gleevec and I have an appt scheduled to consult with her this Thurs.  Due to the published side effects of tasinga, I requested a second opinion from a cardiologist etc, which I had, along with the BMB. As you noted, if the numbers are still stable I would prefer to remain on my current treament; however, if the onc has evidence from the BMB, recent pcr's, et al, that document an increase and justify a change to tasigna I am open to that, too, if it is necessary.  I am just paranoid and worried about the side effects and responses that have been reported by tasigna patients---although I don't have any metrics regarding the percentage of tasigna patiengs that experiece the various side effects. Thank for your reply -- I really appreciate it.



#10 Sneezy12

Sneezy12

    Advanced Member

  • Members
  • PipPipPip
  • 67 posts
  • LocationMinnesota

Posted 18 December 2012 - 09:59 AM

Again Martha, I would like to see real evidence that you need a change. Please post several of the most recent PCR's, BM results, etc. I would question the Oncologists suggestion based on your information. Regards, Frank



#11 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 18 December 2012 - 02:05 PM

Martha,

The 1 log increase issue does not apply unless CCyR is also lost at the same time.  Since you are still MMR or better, you could easily stick with Gleevec.  If both you and your Onc wanted to do something, you could increase Gleevec dosage to 800mg since you are happy with the side effects profile.  Otherwise, the side effects of all these drugs depend on the individual.  Tasigna has fewer side effects for many people than Gleevec, but for some the side effects are worse.  You don't know unless you try it.



#12 isabel223

isabel223

    New Member

  • Members
  • Pip
  • 0 posts

Posted 26 December 2012 - 01:01 AM

My onc told me coffee was totally fine, but adding milk is a little dubious if its alot. (i was drinking lattes) You get the idea, just be careful with food that has substance. sometimes I eat anyway, but not without guilt...

Water of course!

I have the rash on my face and ears, for me it looks like rosacea or poison ivy, just red rashy bumps that sometimes itch. It is affected by stress though for me, and flares up when i am stressed. People tell me they dont notice it but I of course am very paranoid about it. Its alot like dry skin, esp in the winter. A really common side effect which i also experience is itchy scalp.

heres a picture of what i think it looks like :

http://www.google.co...9,r:6,s:0,i:175

Don't get frightened--- this is just how it would look if it were very enlarged and looked at pore by pore. but its that kind of texture and bumpiness- this may just the rash my body produces, because i react this way to poison ivy as well

Best of luck!






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users