11 replies to this topic

[tazdad08]

I've been undetectable for 5 years except a hiccup one month. I've lowered my dose to 200g every other day. I'm gonna take a month or two off and see what happens. I'm just tired. Thanks everyone for the advice and the knowledge I've gained in this group.

[Buzzm1]

Tazdad, I'm sure that there are many of us, especially those dealing with multiple issues such as you are, know how you feel and understand you wanting to take a break.  For the record what dose of Tasigna were you on?  Wishing you good luck and hoping this respite shows great depth in your undetected status.  

[tazdad08]

I was supposed to be on 400mg per day. I reduced it to 200 mg every other day. That held me undetectable for the 5 years. I had a small increase for one month and then back to clean reports. Just sick of the side effects even at that level. And depression is a roller coaster anyway. Feeling mentally bad increases the physical effects.

[kat73]

tazdad - After your five years of undetectable, and at the reduced and intermittent dose, it seems reasonable to me to embark on a cessation trial.  You will probably stay in the safe zone of <0.1 for a couple of months, no matter what happens after that.  In those two months, you can do a very close monitoring and observation of how you feel, both physically and emotionally.  If for no other reason, this is crucial information for you, personally, to have and makes a trial worthwhile.  You will finally tease apart the effects of Tasigna from any other underlying reasons for misery.  Then you can make informed judgments on how to proceed.  My only worry is that - correct me if I'm wrong - it seems that your onc is not in the loop on what you're currently doing or what you intend to do.  Trust can erode and support disappear.  I do understand your dilemma, though.  I'm currently marshaling all my resources to argue my case to reduce Sprycel to 20 mg, perhaps on an intermittent schedule, to try and avoid another pleural effusion.  My onc won't go down past 40, and since I'm at 50 with a moderate PE, I don't have any hope for 40.  Anyway, I get it if you decide to go your own way; be prepared to change doctors some day, though!  Keep us posted as to all your findings.

[cmljax]

tazdad - I concur with Kat 73 - i fought really really hard for my first Tasigna dose reduction in March and my onc finally agreed.  Since then, he has suggested my next 2 reductions - to 300 mg and then to 150 mg 6 weeks ago. Even at this low dose I have lingering dry mouth, but so much better than I was at the higher doses.  I feel it is important to find an onc that will support your plan to stop.  You more than meet the criteria of the STOP trials, so you should be able to find an onc who will support  cessation and monitor your progress correctly.  Good luck whatever you decide to do.

[tazdad08]

This is own my own decisions. I told my dr about my reduced and intermittent doses after 3 years.... lol he looked at me like a dear in headlights.. but then said "well, looks like you've been conducting your own trial". After reviewing my test results for the time I was on the unknown dose, he said he would back me as long as I agreed to increase dosage when needed.

[ROMO]

I get that depression. Even though you have been at it longer than me.

It's like every morning I get up and see the chess pieces ready to

check-mate me.

 

It's the other side of the disease.

My wife always loves me. Even though she sees my change in personality.

Sometimes we have to live for the people we love.

 

It's just a set back, Hang in there.

 

Romo

[tiredblood]

I totally get where you're coming from. No doubt in my mind Tasigna is rough on the body. I'll never forget the first time I was told, I don't think it's the TKI or CML. It was like a slap in the face. Now it's stuck in a loop. My doc does listen, I've got to give him that. I think there just isn't much he can offer and maybe that is frustrating to him too. IDK. He does seem to care. FWIW, you're not alone.

[rcase13]

I feel your pain. I think we all can. I have dealt with nausea off and on for three years. It just comes and goes. Well its back with a vengence. Stopping sounds good right about now. Good luck and just know we all understand and are here to listen.

[tiredblood]

For me the SEs come and go, sticking around for only a little while and other times sticking around for 1-3 weeks. No rhyme or reason.  I don't think the doctors understand the randomness of some of the SEs.  And, why do the shoulders take such a hit from the TKIs?

[TeddyB]

Good luck tazdad.........i know (or at least i think i know) how you feel. Im considering dropping dose from 400 to 300mg Gleevec (and then later to 200), but have not found the courage to do so yet.

[tiredblood]

Right now I think I'm feeling better on 100mg Gleevec. Hope the response keeps up. I'm optimistic.