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Generic Imatinib

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I saw my consultant last Tuesday and got my  six month supply of pills today.  On opening the box I found it wasn't Glivec.  I rang Alcura who said the hospital stated generic on the order.  I spoke with the Macmillan nurse at the hospital and she said North Middx have moved over to generic and I should have been told.  My consultant is useless so I wasn't surprised at not being told. 

I was wondering if anyone else is now on generic and if they were told they'd be changed over. 

 

I'd been undetectable at 0.000 for the last 4 years or so but in Sep 16 it was 0.002 and Dec 16 it was 0.2.  I've been on 300mg of Glivec for two years.  For the six years before I was on 400mg.  My consultant wants to put me back on 400mg but I wanted to wait until the results of the next blood test are done.   Are the results a big enough change to be concerned?

I know I would be a little concerned about a rise such as this as 0.2 is just out of MMR. Also ,it would seem that the PCRs are beginning to rise in a pattern rather than just a blip or one off.

Best Chrissie

I'm waiting to get copies of the last two results and one taken last week.  I find my consultant rather incompetent so would rather see the results for myself on paper.

The only thing that's changed over the last year has been stress from anxiety.  I always believed I'd done so well with the cancer because I was never a stressed person until anxiety hit me last year. Now that's under control I would hope to see the levels drop again.  I just find it a bit odd that I'd been fine for 7 years and the time the levels change is when the anxiety kicked in.

To answer you first question, then generic Imatinib is now the norm, and generally being given to patients on their next prescription. This is not in every hospital as some are still using the original Novarits brand due to an issue with the label in the box for the recommended indications for some of the generics. Yes your doctor should be telling you, but it seems many are not, unfortunately, and so this come as a surprise. Generic will be standard from here on in, as they represent a large cost saving, and are bio equivalent to the original.

Regarding increasing PCR’s, to see a blip is not unusual. However this does represent a good rise from MR 4.5 to over MR3 now, the goal we aim for, and does represent a 100 fold increase in 3 months, still low levels, but a good % rise. Two results is not a trend as such though, three certainly would be. If you coped well with 400mg before then why not increase back, if you reduced for side effects then I understand your thoughts. I reduced to 200mg on destiny and found my levels rose, I go to MMR then the next test was over 1%, however in my case the last jump was when I was off treatment completely for 1 month, so maybe not the best example. On going back to 400mg I got to MMR –MR3 in 3 months. Hope my thoughts and experience help, if it were me I would go to full dose. I would not be “concerned” however as when full dose is restarted invariably levels soon fall, if 400 mg Imatinib worked before I am sure it will again. 

Thanks Nigel.  The only other thing that's changed is the testing moving from Hammersmith to UCLH on the last result. 

One thing I did notice with the generic is the shelf life.  Glivec prescribed to me last year has an expiry of 2019.  The generic manufactured Dec16 has an expiry of Nov17.

That would, or could be the answer. The Hammersmith will have reported your result on the International scale, where as UCLH may not. An example of this would be QE Birmingham who's conversion factor is 1.1 the Hammersmith 0.3 so a result at QE can be 4 times higher, but actually the same in effect. If that were the case your new number would be much lower. Therefore without this number for UCLH you are not comparing directly and so would need a second result from the same lab to see what is happening. Hope you get the written results soon so you can see what is what. 

I got my result today.  It was 0.005.  I should receive a hard copy in a couple of days.  Relieved is an understatement.

Excellent news, so pleased, how on earth did they give you a result of 0.2 though initially.

Good news! - you must be very relieved.

As Nigel has already said, the move from the HH lab to another is most probably the reason for such a big change in your percentages! Nevertheless I agree with Nigel that it is difficult to understand how the new lab got it so wrong other than the sample might have been contaminated in some way. 

Do not worry too much about the generic patient info leaflet (PIL) being different from the branded IM - 'Glivec'. All generic imatinibs will eventually have their PIL inserts updated. Although it is difficult to tell wens exactly when, is just a matter of time. The particular names of generic imatinibs will differ throughout the UK, depending on the region and the deals (price) negotiated with the different companies, but all have been licensed by either the EHA (Europe) and/or the MHRC (UK) and are as equally effective as each other only differing in the way they look i.e size and colour etc.  The active ingredient is imatinib mesylate which is exactly the same as the original brand Glivec. 

The reasons this is happening (not only in Europe but globally) is because the patent on Glivec has expired. The generics are a fraction of the cost of Glivec so it makes sense.... it is not uncommon for generics to be used throughout the NHS.

Sandy

It turns out the 0.2 was actually 0.029.  I finally got a paper copy from the hospital. 

Wow - that is a large difference. So was it a clerical error somewhere, or were you just told the 0.2% figure verbally and someone misread the lab report?

Either way, good news and I am sure you must feel relieved. 

David.

That is an appalling error on the part of one of the hospital staff. To have caused you so much anxiety is not right and they should be made aware of this. Doesn't give you much confidence that they understand what they are doing or even that there is a patient receiving this wrong information and the effect on this patient. Sometimes I despair.

However, I imagine you are very very relieved.

Hope it doesn't happen again - if you get another unusual reading i would insist they repeat the test.

best

Chrissie