Hi, my consultant has spoken about trialling treatment free. At first I thought that's absolutely fantastic and the ultimate goal. She's given me a couple of weeks to think about it, so now I'm torn. I really like the idea of not having to go through the daily ritual of doing a job then resting for a few hours, 7.15 taking imatinib,getting back to a normal routine - if that makes sense? But... Ive been told the withdrawal symptoms are quite bad, blood test and appointments every month for a year, every two months for a year then back to every 3 months forever, if the cml shows up it will in the 1st 6 months then back on imatinib where I'll go back into mmr5. The consultant said there's only a 40-60% success rate in staying off.
I can't get past " if it comes back" knowing that I'll always be on treatment, but if I don't trial treatment free then I'm still on treatment forever.
Its really really difficult, hopefully all the above makes sense, I guess what I'm asking for is anyone that's trialled treatment free how did you get? If you've been offered treatment free but decided against it why did you make that decision?
Any advice and comments would be gratefully received.
Hi cubby, just dropping in past from the Lymphoma Groups...... treatment free sounds great..... I aiways went with what the experts said and as you know there are options if and when required.
Active Monitoring (Watch and Wait) is often used in Lymphoma as the default starting point and many can be on this for many years.
Lets look for any group members to be looking in to help out.
Hi Angie, I do understand the difficult with making a decision like this. I have been on my NHL journey for over 21 years now and have lost count of the relapses, changes in treatments, coming off and going back on treatments...... new treatments to try.... but i put my full trust in my team as I had no idea..... ask me about how to treat Dry rot in a house 
The main thing I found that my team did the right things and got me into remission back in Sep 2016 - that was after being told back in 1999 that my type was incurable, treatable but would never see remission.
