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Switching to Tasigna

Hi All.

It's been a long time since I posted last. I'm being switched to 800mg Tasigna daily starting tomorrow from 800mg Glivec and was wondering what to expect and look out for. Reason I'm being switched is rising PCR's from a low of ~0.1% on the IS scale 2 years ago to January results of 0.77% in 1 lab and 2% in Hammersmith. The trend seems to be up so decision is better to switch now and try stop and reverse the increase rather than let it get higher.

I've noticed that a few seem to struggle with a rash. I've had problems with a rash for the last couple of years (been on Glivec 6) but we're not sure if it's definitely Glivec related or not. Hopefully won;t get worse with Tasigna.

Any advice or suggestions would be welcome.

Thanks

Brian

Hi Brian,

I was put on Tasigna in November following bad side affects on Glivec. I've had a few problems with Tasigna ie an itchy rash, which meant me coming on & off the drug/reducing dose etc for a fair few weeks. I am on 800mg split into 2 doses 12 hours apart. However I am on a very low dose of steroids as the rash appears as soon as I stop the steroids.Not sure what might happen next when I see the consultant as its not ideal taking steroids.

I had a red flush on Glivec which didnt worry me. I much prefer Tasigna to Glivec as all the problems I had have gone.

Not everyone develops a rash so you might be lucky!

I have found taking Tasigna ok at 12 hours appart with nothing to eat or drink (other than water) for two hours before and one hour after. Letus know how you get on.

I wish you all the best & hope you get a better response.

Hi Brian,
I hope you see lots of zero's in future pcr results. As Ali says, not everyone gets a rash from nilotinib/Tasigna so you might well be OK. There is not much evidence of cross intolerance between the 3 TKI's.
Good luck with your new regime. I am sure you will get used to it quickly and feel better too.
Keep us updated on your progress and side effects etc.
best...
Sandy

Hi Brian,

In order to detect a trend you really need 3 consecutive PCR results. They should all be done at the same lab, otherwise you are comparing apples to oranges.

The margin of error in many labs is 0.5. Going from 0.1 to 0.7 over a 2 year period is not an indication that you are relapsing.

Insist on a PCR test when you start Tasigna and one every 3 three months thereafter. I would also ask to have one done after the first month of Tasigna. Why wait 3 months to find out if it is working?

Make sure that you get your own copy of the resuts. Once you look at two of them they are very easy to interpret.

Zavie

Zavie Miller (age 70)
Ottawa, Canada
dxd AUG/99
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.6 log reduction Apr/08
3.6 log reduction Sep/08
e-mail: zmiller@sympatico.ca
Skype: Zavie Miller

Hi Zavie

Thanks for your reply. Don't worry - we are comparing apples to apples as I have regular PCR testing in two separate labs with samples being taken every three months for both. The trend in both labs has been similar for the last 6 years with the absolute values differing. Both labs have been showing an increasing trend over the last two years with an increase in the rate of increase since December. I only today got my latest PCR result from Hammersmith and the result had increased further from the result 4 weeks prior (testring frequency was increased due to last increase)...to close to 4.8% on the international scale using the Hammersmith conversion factor. I have PCR results from both labs from just prior to starting Tasigna and we'll be reviewing things 4 weeks after I started the drug. Hopefully the increase will be halted and reversed.

Thanks again for your reply and advice.

Brian

Thanks for your reply Ali

Started last Friday and so far so good. I feel much better actually and some colour is returning to my skin. Slight lightheadedness or dizzyness but that seems to be less a few days in. No issue with rash yet but it's early days I guess...we'll wait and see. Main thing is for it to bring my PCR levels down!

Thanks again.

Brian

Thanks Sandy

Felt better physically since switching and also mentally as I'm happier to be on a stronger therapy. I always felt that Glivec was not going to work long term for me given my initial slow response. Got a mutation screen result from Prof Apperley yesterday from a January sample and it was negative which was a further boost. Todays early Feb PCR result came in the post today however and was much higher...possibly have lost CCR based on that result (1.153% converted to 4.86% on the IS)... it was dissapointing to see such a jump in 4 weeks. At least I've made the change now and don't have a mutation so we'll just have to wait and see and let the Tasigna do it's work. Having a routine FBC tomorrow to check my blood counts havn't reacted badly to the switch.

Brian