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Decision about coming off Imatinib (Glivec)

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Hello.

I was diagnosed in 2005 with Chronic Myeloid Leukaemia (CML).  I also have some other illnesses.

I was given Hydroxyurea and 400mg of Glivec (Imatinib) to start with.  I then went up to 800mg of Glivec before going down to 400mg and then back up to 600mg.

I was on 600mg for a long time before my dose started being decreased slowly over some years.  Part of the reason was due to the very high levels of side effects that I was experiencing (including rashes, paleness, stomach problems, hair loss & extreme fatigue – I was told that I was the worst with the side effects) and the other reason was that I was retaining a high level of Glivec in my blood (I don’t seem to want to let go of it!!).  It makes you laugh when your Consultant says that you are special, but not in a good way!!

Since 2015 I have been on 200mg of Glivec and the level of Glivec in my blood has been going down.  The level is still a bit higher than the Hospital would like, but it is a lot better than it was.  All my other blood tests results have been good, including my BCR-ABL which is undectable.  I am in Major Molecular Response.

A few years ago the Hospital mentioned that if a trial came up to come off the medication then I would be possible candidate to go on this.  I never thought that this was ever going to happen to me.

A few days ago I saw my Consultant and he said that he had been thinking about things.  He said that I have been on Glivec (Imatinib) for a very long time now and have been doing really well.  He has said to me that he thinks that I should try and come off the medication completely.  I will not be part of a trial.

I will be monitored/have a check up once a month for two years.  This includes all the usual blood test, etc.  If everything is ok after two years then I would be seen by the hospital every three months.

The decision has been left up to me.  I was told that I am more than welcome to stay on the medication if I want to.  Although I may need an adjustment to the medication if I am still retaining too much Glivec in my blood.

I am totally scared and confused about what to do and what to decide.  It is a huge decision to me.  I kind of feel a bit safe where I am now with the medication, of how I am doing and that everything is a bit more under control.

I have been unable to work since being diagnosed and my quality of life has been reduced.

CML has left its mark on me inside and out.  I have always worried about what would happen should the disease ever change or get worse, even when I have been doing ok and the Hospital has been pleased with my progress.  I am a totally different person to I once was.  A lot has happened and gone on with the CML.

I just wondered if anyone out there has had the same decision to make or have actually come off the medication.  I would like to hear your stories and advice/comments.

Thank you for your time.  I look forward to hearing from anyone.
 

Hi. It sounds like your consultant is planning basically  to follow the protocol suggested by Prof Clark et al in this paper  It says that when people on the Destiny Trial reduced or stopped and PCR started rising they all regained their previous status when the dose was put back to the original level. I therefore didn't see a downside to trying to reduce or stop, and started 4 months ago by cutting my imatinib from 400mg to 200mg, and last (monthly) test I was still PCRU. As you have been on 200mg for a while the calculation may be different (e.g see what happens at 100mg?) - that's outside my knowledge. Hope this is useful.  

Hi

I went on DESTINY in May 2014 - half dose imatinib (200mg) for a year with monthly monitoring; nothing for a year with monthly monitoring; then nothing for a year with two monthly monitoring.  I maintained PCRU/MR 4.5 throughout.  I am now "beyond" DESTINY and still off imatinib completely, and still MR 4.5, with three monthly monitoring.  I will have my three year "off treatment" anniversary in May.

I had an easier ride to get to a good response than you did but still a big decision to stop treatment that had worked.  However, I have confidence in my consultant(s) and am sure that if anything did recur, I would respond to imatinib. 

Good luck - I was once told by my consultant not to worry, or at least to let others do the worrying for me... I rather liked that.  (Though I religiously monitor my results, still!).

Richard

I’m a Fellow traveler here from the America.
An English speaking country that was
founded by English speaking peoples.
Makers of Triumph Motorcycles.
007 Rode those babies.
As good as the Beatles,. got carried away there. (sorry).

In plane English:
The way I figure it is that you are already
in a high stakes game. I’m assuming that you aren’t
a spring chicken? The only thing you have to loose
is taking that pill everyday. Cus, if it don’t work,
Take the pill again... Everyday.
On the other hand you just may be ‘clean’  of the leukemia!
God bless ya....

Romo,
DX in Augest, 2016.
PCRU Dec.     2017.
Sprycel.

Romo

Hello.

Thanks for your comments.

I have a lot to think about.

Hello

Well done on your progress.  It sounds like you are doing well.  

I will still continue to keep tabs on my results whatever happens.

Thanks for your comments.

Romo,

Thanks but actually I have just turned 40 years old, so I would still consider myself a spring chicken!!

I have lots to think about.

Very much still a spring chicken ... or hedgehog, by the looks of your profile picture! 

I'm a couple of years younger than you, and am keen to reduce or eliminate my TKI consumption. I'm taking it slow - reducing a little bit, but not yet at the point to try to discontinue. I'm on 70mg of dasatinib at present. 

If I were you, with undetectable results, I'd go for it. Obviously a very personal decision, but in your shoes that's what I'd do. All the research shows that if your PCR does increase, even a lot, reintroducing the TKI brings this under control again. There have been no instances of death on the DESTINY trial associated with an unsuccessful attempt of withdrawing TKIs. 

David. 

David,

What is your current PCR level?

Hot off the press this afternoon, it's 0.05% on the international scale. 

David