Should I Try TFR now ?

I am sure that there are many on this Forum with lots of experience of TFR both in terms of the literature and advice on it and the practical experience that they have had.

My first point would be to take professional advice because if you stop or reduce the dose you will need very close monitoring of your PCRs.What is the reason for your wish to discontinue and is it because of side effects ,expense or other considerations? Would there be any risks involved and in that context how long have you been undetectable or nearly so -two years or more or very recently.

I was informed that there is usually a 50% chance that by going on  TFR you might lose your molecular remission but  if you do there is a good chance of regaining it if you re-start.Studies have shown that if you reduce the dose for a period  before you stop you might have a better chance of retaining your remission boosting your chances by a few percentage points.In some countries there have been TFR trials so perhaps your specialist would be aware of these such as Destiny in UK.

Regards

John

I am in your situation as well (3 years 'undetected') and will try TFR again (I tried once before - but not when undetected). The last time I tried, I had withdrawal symptoms (painful joints & thyroid issues). Going back on drug eliminated them. Now I am dosing every other day and will wean myself off as I approach my complete stop date.

You might consider the following:

Check with your doctor on a monthly PCR testing program (or trial if available) to track your cessation attempt. The first six months are key. Assuming you can get checked monthly, one month before you start (to stop that is) and one month before your normal PCR, go every other day with your medication to see how you react and reduce dose along the way. In this way you will minimize withdrawal symptoms.

Your doctor is misinformed about taking the biggest possible dose you can take regarding sprycel*. Sprycel is a "threshold" drug meaning once a minimum dose level needed is reached more is not better. More drug actually impairs your immune system from fighting the cancer naturally. Key for you is to find the correct minimum dose which works for you. I take 20 mg every other day - and I am undetected and have remained so for years. I have a suspicion you will as well. But you won't know until you try.

You should ask your doctor you want to drop your dose to 50 mg or even 20 mg per day and test at one month. If you remain PCRU, then continue at 20 mg and test again at two months and if still undetected, go to a three month testing program. I am on a six month testing program, but that will change when I stop.

After six months of no detection while you are on 20 mg, then discuss with your doctor about stopping - or doing what I am doing and phase off the drug.

You may find dropping dose from 100 mg to 20 will lead to withdrawal symptoms - keep that in mind.  I was dropped from 70 mg to 20  mg at once with no withdrawal symptoms. My response increased dramatically once I was dropped to 20 (by one of the top 4 CML researchers in the world). He knew what he was doing apparently.

(* This is not the case for imatinib in which increasing dose tends to increase response. Not all TKI's behave the same)

This link is a video of a talk by Prof Richard Clark at the UK patient day last September. It may provide some useful information for your discussions with your doctor.  

Thank you for this link. Great update!