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Consultant wants to take me off Imatinib

Hi All,

i was a member of the forum in the early days of my life with CML, diagnosed in 2002. I have been taking Imatinib since Jan 2003 and have been in molecular remission since later that year. I'm afraid I don't know all the figures but know that they are 'very good'. I met the new consultant at my hospital for the first time today, and his opening gambit was asking me how I would feel about coming off Imatinib. When asked about the reasoning, he said that my results were negative for so long, that it made me a good candidate for coming off. There was no mention of any trial that I would be taking part in, and when I asked how often I would be monitored, was told every three months. Having read the article about treatment free remission on the site, I felt in need of advice/ reassurance about what I should do next and in the three months before I see the consultant again. 

I hope that someone else with experience in this area can help,

many thanks,

AlisonB

 

 

Hi Alison, I am sure as time passes more and more patients will be asked this question, it is a dilemma. The data to date from what I have read and seen presented seems to show successful stopping has a few factors, of course though a deep molecular response, which you seem to have, and time on treatment.

I am not sure if you mean by your remission undetectable PCR or just MMR. It seems undetectable as you mention the Dr says you have been “negative for so long”. If so great, the second point, and certainly at this years CML Horizons conference this was said a couple of times, it may well be that time on treatment may be as, or more important than being undetectable. So you seem to tick both boxes. To me I would be asking myself about side effects also, how much you suffer also.

Stopping, firstly you MUST be PCR tested monthly for say the first 12 months. Without this I would not entertain stopping. Secondly, you need the assurance you can restart the same drug at anytime, lapse or not. Lastly, you need a defined poaint to restart, eg MMR, confirmed by a retest if hit. Trying to stop seems to be safe, to my knowledge there are no cases of patients not regaining a deep response quickly, MMR, and their deeper response in a few months. Others may correct this. This was the case for me after failing. Whatever you decide will be right for you. Let us know. Nigel

Ps see attached link to CML Horizons. Prof O'Brien. Ignore the " debate " comments, this was aimed at being contentious on purpose.

https://vimeo.com/168315621

 

Hi NIgel

Thanks for posting this link which I found very interesting. I always felt I needed another zero in my PCRs before DESTINY became viable for me. I've never got below MMR in 7 years so to see the rise towards the end of the first year on half dose ( like you) did not surprise me. Maybe if I can eventually become undetectable i will try again.

Best

Chrissie

Hello Alison, I remember you from your posts some time ago. It's great that you have responded so well to TKI therapy that your clinician is offering you the chance to stop. However, like Nigel has already said, you really should only consider stopping if:

a. you are in a clinical trial

or

b. your clinician is prepared to monitor your bloods by QPCR testing every month, rather than every 3 months. 

Nigel is correct when he says that the DESTINY trial first 12 months de-escalation data (now published - to be presented at this year ASH meeting in December) nobody has failed to regain a molecular response once it was clear that they would not remain in treatment free remission on 1/2 dose and after restarting their TKI at the full dose).

You might ask your clinician if he/she is prepared to try de-escalation for 12 months -mirroring the DESTINY protocol, rather than stopping you outright which would mirror the protocol for the Euroski trial or STIM trials in Europe. The UK is the only country that is looking at de-escalating the dose for 12 m and only then - if you hold your molecular response - stopping fully. 

If your qPCR results are stable and lower than MMR (0.1%) then it seems you have as good a chance as any to hold TFR for the longer term. You need to ask your clinician some questions I think.

Good luck and best wishes,

Sandy

I'm in the DESTINY trial and just posted results at 24months.

Got to say I agree with what everyone here has said.     Ideal would be within the auspices of clinical trial.  Though currently I don't think there are any trials recruiting.  Maybe someone else will know if I've got that wrong.

No matter what though I'd say to mirror what DESTINY have done.  So starting with half dose and MONTHLY MONITORING

Then after a year knowing you're "safe" on half dose to go to nil dose and MONTH MONITORIng.

As we know from just reading the reports relating to DESTINY guinea pigs posted on this forum it is possible to relapse and to have to go back on to TKI's.    Essential therefore in my opinion that it's monthly monitoring as a minimum.

Thanks to all who have replied. You have given very helpful advice and I will do more research. Nigel - my only symptom on Imatinib has been puffy eyes, so have been very fortunate. I would like to hear from other people who have had a similar suggestion from their doctor, so I can be as well prepared in November as possible.

I think you'll struggle to find someone else with a consultant that's suggested what yours has.   Put simply it's not best practice and indeed it's precisely what my consultant said must NEVER happen!

My experience is slightly different from those above.  I was on Spirit2 for 5 years, and had good results from imatinib.  I asked about going on the Destiny trial, but my hospital is not one of the ones involved.  However, I had over a year on a slightly reduced dose (300mg) and have now been on 200mg for about 9 months.  My last PCR showed a slight increase, so I am not sure what will happen at my next appointment later this month.  Through all this I have still had only 3-monthly tests, except for one at 2 months after the dose was reduced from 300 to 200 mg.  I've been happy with this, so far, but if I need to increase the dose, that's life!

Olivia