10 replies to this topic

[GerryL]

https://www.youtube....h?v=BMKpqY1MjoY

[GerryL]

PDF versions http://www.cmladvoca...net/cmlhorizons

[simone4]

Gerry, thank you for this valuable link.

I hope all is well with you.

Simone

[GerryL]

Hi Simone,

Going well so far on my TKI cessation, blood test next week. I've made it through the first six months, but can't really be sure until June 2016, though it can still make low level appearances after that - one of the people on the FB forum I've joined has had this happen.

There was an interesting couple of answers in the videos, 1st being that it is expected in the future that your doctor will be the one working with their patients for stopping TKI (which I'm already doing). 2 that even if the CML comes back, they are expecting people to be able to have more goes at coming off again. 3 His theory is that there are "natural" killer cells which may be assisting people in being able to stop.

Hope everything is well with you.

[winespritzer]

Dear Gerry,

Invaluable links. Thank you.

Winespritzer

[VickiW]

Thank you for the post Gerry.  I have not been on for over a year I think, maybe longer and so much change.  I will be following you once again very closely.  I asked my Onc just the other day what were the chances of me stopping the TKI's too and he just rolled his eyes.  I said, "I know, no long term studies on Sprycel yet" and his reply was "hang in there".  2 /12 yrs + in PCRU after total failure on Gleevec.  (was on Sprycel for 1 1/2? yrs before reaching PCrU).  I admit I have not been keeping track of things.  Do you know of any other studies out there I need to look at?

Thank you again for allowing us to follow your journey.  Sadly, because I haven't been on since getting frustrated with the first site change over, I have lost all access to old posts and all the valuable info in them, sigh.

 

Vicki

[gerry]

Hi Vicki,

 

There is a Sprycel trial going on in Liverpool  http://www.controlle.../ISRCTN74084226 the trial finishes 2017

 

Another view of stopping your TKI https://www.youtube....h?v=U1wxJXDWTLU

[Marnie]

Made me feel much better since I'm now off meds for a full month due to unresolved lung issues.  I won't get nervous until the 7 month mark

[pammartin]

This is from my local oncologist, but he said after a few years of response it usually takes up to 2 years to lose response.  Of course this is without a mutation of some form or other complication.  I find it interesting 3 years ago I was paranoid and I had to take the Sprycel at about the same time every day or I would go into panic mode.  I heading toward my 4th month and I can't seem to find the energy to get excited.  The positive test results helped, of course so I can't claim total disregard.  Nice to read articles geared toward positive results from breaks.

 

I believe I am not looking forward to returning to whatever med I decide. Except for the crap from the PH, this is the best I have felt and my skin is not nearly as dry or bumpy. 

[LivingWellWithCML]

This is a very interesting presentation -- thank you for sharing!  It is intriguing to think that our own immune systems could, in some cases, take over and control minimal residual disease without TKI treatment, even if a patient is around MMR ... although I imagine that would be pretty rare.

[Marnie]

Wow, Pam. . .that's interesting info.  The thing that is worrying me now, is that BEFORE. . .I had an internal alarm clock for 7:00 p.m. PILL TIME (not to mention my phone alarm, watch alarm, and husband's watch alarm). 

 

But now, after being off for a month (and turning off my alarms). . .7:00 comes and goes, and I don't always think about my pill.  I could get used to not taking a stupid pill every day!  Except that I can't.  Damn. (oops. . wonder if I'll get a warning point).

 

m

 

Hope you are feeling o.k.  Well. . actually hoping that you're feeling better than o.k.