You are here

Advice please, Glivec or interferon?

Hi, as some of you might recall I have been struggling with TKI's Due to intolerance. The 3rd generation drugs ie bosutinib & latterly ponatinib have caused problems (even at a greatly reduced dose) with my liver & I have had to stop treatment yet again. My local consultant has been in touch with HH again & between them have decided to either start interferon or go back onto glivec but at 100mg daily. i have an appointment tomorrow to discuss this with my consultant.  I was so ill on 400mg glivec & swore I would never try it again, but now at a reduced dose option I don't know what to do. I have never had interferon, but know the very nasty side effects can cause lots of problems. Can anyone advise me on the way forward & how interferon may have had an impact on daily life?

with thanks & love to all.

Ali

Hi Ali,

I am really sorry to hear that you have had the same problems with raised liver enzymes even with both 3rd generation TKIs.

Glivec/imatinib @ 100mg. - my thinking on this option is: if you are still in MR you could give this a short trial.

100mg imatinib is not an active dose in the majority of chronic phase CML patients with higher levels of Ph+ cells, but given your sensitive/responsive disease (and you might consider the STIM trial results of approx 40% responders for people in CMR for over 2 years (0.003% bcr/abl) then you could think of 100mg imatinib as a 'maintainance dose' for you and it is such a low dose that you might not suffer from the side effects you previously suffered with 400mg.

 

Interferon: I assume this will be interferon alpha? I have no experience of this drug but I know that it can cause horrendous side effects.

There is another form  - pegylated interferon- which allows a much lower dose to be given. However, I am not sure this form is available here in the UK. I know that Prof. Hochhaus in Germany has been studying this as a maintainance therapy for those in MMR/CMR for some time now. Your should be able to find published results of these studies if you google the German CML clincal studies/ and or his name.

I know dasatinib is used in very low doses in some people with good results- but this is anecdotal.

At least you know you have very responsive disease-i.e it is controled by TKI therapy. It is the sensitivity of your liver that is the problem- and that is a problem that I have no answers for (other than complimentary therapy like Milk Thistle which might or might not be effective in your case)

Hope this helps,

Sandy

 

 

Ho Ali

I am on low dose Nilotinib, 200mg one day 400mg the next.  This has greatly reduced my horrid side effects to tolerable, plus my PCR is still slowly, very slowly, dropping and has been 0.00? something for over a year now and decreasing at each 3 monthly test.

Its an option I took after a great deal of discussion with specialist at Kings, and for me its working. 

Interferon was just not good for me, I had terrible reaction almost immediately, but I do know some people can tolerate it and get excellent results.

So I guess like everything associated with CML its a gamble!.

Good luck

Pennie.

Hi Ali

We met briefly at Cardiff after speaking on the phone.  I am so sorry that you can't take the new TKIs. Just wanted to let you know that I'm thinking of you - and have been since we met ,

In my thoughts

Chrissiex

Hi Ali,

Before the Glivec era, after a failed autologous stem cell transplant, I was on Interferon Alpha for 8 years. The reported down side of Interferon was the susceptibility of some patients to depression. That was something the Doctors were aware of. I did suffer that, but it must be noted that in those days, there was no alternative to Interferon - so maybe the depression wasn't totally down to the drug. The other side of it that wasn't nice, was the three times weekly self administered injections - but again, maybe this is easier these days with modern injection methods? I don't know. Slight bruising/soreness from the injections was just a small problem.

Now then, Interferon Alpha wasn't regarded at that time as being effective in combatting the disease, but all I can say to that is that I survived for 8 years on it and my counts were as steady as a rock all the way through. Not everyone was so lucky though. It saw me through to the development of Glivec  - something I might not have done if it weren't for Interferon. Tiredness was a problem also, but that's something that many patients suffer from on todays newer drugs.

I'm sorry this is all such a long time ago and it may not be relevant today, plus it probably wont help in making your decision, but that's my recollection of Interferon and it might give you some kind of insight in what to expect.

Hi & many thanks for your replies. My consultant describe the side effects just as you have Dennis, although it did you well at the time.

We have decided, for now to try a low dose of Glivec for a month, to see what happens. My liver enzymes have all but returned to normal levels again as I have been off treatment. I had the most horrendous side effects when on a full dose, so a reduction may well be right for me. I am having lots of anti sickness (which hasn't worked that well so far & have now got the glivec tum as well) but hopefully it will settle down soon. Then there is always interferon if needed. My consultant said if the worst happened & I go into blast that they could give me Nilotinib for a short time to get things back under control before an allergraft. So, at least now we have some sort of a plan!

Nice to hear from you Pennie, how are you doing & Chrissie too, good luck.

thank you all.

Ali

Hi Ali   I am doing OK on nilotinib, it suits me better than glvec or dasatinib, but as with all TKIs has side effects!!

I found the sickness with glivec eased a bit if I kept off all dairy products, in fact I still only use goats milk and cheese as I cant stand the cow stuff anymore!  Also drink lots, and I really mean lots, of water when you take the tabs.  Have you tried different times of day?  Best for me was with a big meal in the evening, always after some food so not direct onto empty system.

Can't you get Nilotinib? Or does it not suit you?  Perhaps I am lucky having been on it for over a year now.

Good luck

Pennie.

I think you have made the right choice there, Ali. Good luck with it. Hope it works well for you.