28 replies to this topic

[sasalinas]

Hi,

Thanks so much for this explanation it was very insightful. I want to know when do I know I am in remission.

A little more than a year ago I was diagnosed with CML my first molecular test gave a result of 13.266 the second one a year ago was of .131 and the last one recently done gave for result .049 is my understanding that it means I have traits of the bcr abl gene but I will like to know when will I know if I'm in remission and can stop treatment and just monitor the gene.

Thank you very much(:

[valiantchong]

Hi,

No one could stop treatment base on current recommended TKIs medical knowledge  eventhough you achieved PCRU or less then  4.5 log reduction. Those who tried to Stop treatment is under STIM trial and close observation after achieved at least 2 years of PCRU.

However one day hopefully more and more could do this.... well just for present knowledge it is not recommended.

[hannibellemo]

Welcome to this discussion board. At this time the treatment regimen is for life. There is no remission for CML, the term used is response. We have a response to our TKIs but they are not a cure. Sorry to have to tell you that but I'm surprised your doctor didn't. As valiantchong says above there are a few who are in a trial after being PCRU for a minimum of 2 years to see if they can stop their TKI and remain PCRU or very low residual disease. There have been a few who have but most have relapsed within 6 months at this point.

The search for a cure continues and many feel that they are very close.

Good luck!

Pat

[PhilB]

Hi Sasalinas,

The concept of 'remission' doesn't really exist with CML.  The standard model is to take the drugs for life in order to maintain a good level of response.  The drugs only manage the disease rather than curing it.  Your response looks very good and the odds are very strong indeed that you should be able to live a normal lifespan as long as you stay on the drugs.

Some people who have been below the level of detection for 2 or more years have tried stopping drugs under clinical trials.  Most had their numbers come back up to detectable levels again.  Some are continuing to be undetectable, but the jury is very much still out on whether or not they are genuinely 'in remission' or if the CML will come back eventually.  As only a minroty ever get to an undetectable level and only a minority of them seem able to maintain response without drugs it is probably best to work on the principle that you'll be taking the drugs for life - or until someone discovers a cure.

[kellbell]

Thank you so much for all this information.  I have a much better understanding now. I will have to try and save it so I can refer back to it. thanks again

                                                                                                                                   Kelly

[hannibellemo]

Hey, PhilB,

Great minds think alike!

Pat

[PhilB]

Either that or fools never differ!

Always fun when you find someone else was typing a response at the same time as you and got in first!  I particularly like the diplomatic way Kelly attached her response to Trey's post rather than picking between us.

Phil

[CallMeLucky]

I will say that I often feel it is unfair we are denied "remission" (of course this whole CML thing is rather unfair so it seems kind of petty for me to focus on remission vs. response).  Nonetheless, the general population does not understand response vs. remission and even within my inner circle it is a concept that is often misunderstood.  Most people can only understand "I have leukemia" or "I had leukemia" - one being bad, the other being good.  Furthermore there is the emotional frame of mind for myself.  Now one might say I am just kidding myself by saying "I am in remission", or "I don't really have leukemia anymore".  But I can tell you I sleep a hell of a lot better at night when I try to frame it that way.  More than anything I find it makes a big difference to my wife.  When I would say I have leukemia it was this unbelievable dark cloud hanging over our lives with us just waiting for the inevitable to happen, I mean really just how long can someone with leukemia live (in the layman's sense)?  When I started to say, I had leukemia but today I am in remission (big asterisk - unfortunately I have to keep taking medicine to keep it from coming back) there seemed like there was hope.  At the end of the day I can make this argument convincingly.  If I walked into a medical facility today and were to be examined by a doctor they would not know I have CML.  A blood test and a BMB would all come back normal.  I have no signs or symptoms of CML or any other indication I am sick.  For all intensive purposes, I am "healthy".  So much like TKI drugs are not chemotherapy, they are "Targeted Therapy", many people don't understand that and for peace of mind sometimes it is just easier to go with the accepted vernacular.

[sasalinas]

Hi.

Thank you very much for all those who responded to my question, and to the wonderful advise on the perspective of had vs have cml, but I am actually under a clinical trial and for my understanding by the explanation my doctor gave me is patients reach remission with in two years and they continue off any medications and monitoring for several years and maybe I should ask again and get more information. I do not remember the exact amount of time but what I remember is that according to his trials he has several patients that have reached remission and maintained it for as long as this trial has been going on, so I hope and believe that my understanding is correct and I will be "cured" when I reach remission.

What I really would liket to know is when will I be considered to be in molecular remission?

Thank you very much

Sandra Andrea Salinas