67 replies to this topic

[story]

Have some good news, I am in the LAST study and have been off the Tas for a month now, Just got the PCR results for my first month and it is negative, I am assuming that is PCRU. Don't want to get too optimistic but wanted to share the news with people that understand what it means. Had a lot of headaches and muscle and joint pain. Dont know if they are related to dropping the TKI or not. I really felt bad the first few months on Tas so I guess it makes sense I would feel something without it. My energy level and mental outlook are much better though.

[pammartin]

Congrats!  May you continue to receive those undetectable results.  Glad your energy and general outlook is better. 

[mikefromillinois]

Congrats story!  I'm at 2 months in the LAST trial and also still negative.  I think if we make it to about 6 months our odds will become very good for a happy ending.  Stay the course...

[tazdad08]

Good luck, and keep praying. I was on a very low dose (600 mg per week) for 2 years. I became detectable for the first time last month. That news hit me harder than the initial diagnosis. Stay strong and enjoy the better quality of life. Hopefully you will have long periods of time with no TKI's

[scuba]

All the best - take it one month at a time. The first six months are key. If you remain MMR/PCRU during those first six months - you have an excellent chance to go the distance. 

[gerry]

Good luck.

[story]

Thanks for the thoughts and prayers, it is really helpful to be able to discuss with folks that understand.

[gerry]

It took about 18 months before I felt all TKI related side effects finally left.

 

I asked my doc if I ever could consider myself cured (maybe at 10 years) he just smiled at me. He has a patient who had a BMT 14 years ago and still has the occassional blip.

[Billie Murawski]

Wonderful Wonderful news I sure hope all our newbes read these posts and realize these meds do work. Billie

[SUE]

Congratulations, story.   Please keep us posted.

[TeddyB]

It took about 18 months before I felt all TKI related side effects finally left.

 

I asked my doc if I ever could consider myself cured (maybe at 10 years) he just smiled at me. He has a patient who had a BMT 14 years ago and still has the occassional blip.

 

Wow, it hung in there for a long time, glad they left at last

[gerry]

Brain fog was the first thing that disappeared, skin issues was next. 

Funny thing is I was able to drop BP med and cholesterol med while on Gleevec, back on them now. lol

[Billie Murawski]

Hi gerry, Brain fog is my main complaint and I'm only on 20mgSprycel. I read the pamplets that come with my other meds a lot of them say confusion disorientation memory loss dizziness I'm afraid I'll get a dui the next time I walk into a grocery store. I.m afraid to drive anymore I try to tell my doctors but they all think I'm nutz! I need some mind exercises to help me concentrate better. Any Ideas, I should get a job or volunteer somewhere but I probably would forget where I'm supposed to go . Billie                Have a good day

 

Obviously I still cant sleep, it's been a year now.PA says today maybe I need a sleeping pill, yeah right I really need another pill to take UGGH!!!!!!!

[AllTheseYears]

I'm happy to hear from participants in the LAST Study.  My onc has approved me to try to be a participant in the study at Duke Medical Center in N.C., but the study keeps being delayed there due to holdups in the computer training.  So frustrating!  Now set (allegedly) to start by mid-August. My problem is that I'm about out of Gleevec and am hesitant to buy more because I'll need to pay the entire Medicare coverage gap to get one month's Rx.  More than $8,000. Then, I might not need any more Gleevec for the year, after paying the "deductible." 

 

I'm tempted to "roll the dice" and see if I remain PCRU until the trail begins.  That also means, however, that I'll be off Gleevec until the 21-day follow-up lab to ensure I'm still PCRU.  BTW: I've been PCRU more than a decade now, maybe 11 years or so.  I'm thinking rolling the dice might be worth the gamble. 

 

Any thoughts?

[mikefromillinois]

Seems like there have been comments in this forum from people who had overstock or no longer needed Gleevec and were having a hard time "getting rid of it" because neither the pharmacy nor their doctor wanted to take it off their hands.  I think the person with the extra meds ended up soliciting private messages from anyone who needed some.  (There are probably rules/laws against giving it away hence the private message aspect).  Maybe someone here who has extra meds will see this and private message you.

 

Good luck at Duke.  We'll be rooting for you.  Please keep us updated.

[Buzzm1]

I'm happy to hear from participants in the LAST Study.  My onc has approved me to try to be a participant in the study at Duke Medical Center in N.C., but the study keeps being delayed there due to holdups in the computer training.  So frustrating!  Now set (allegedly) to start by mid-August. My problem is that I'm about out of Gleevec and am hesitant to buy more because I'll need to pay the entire Medicare coverage gap to get one month's Rx.  More than $8,000. Then, I might not need any more Gleevec for the year, after paying the "deductible." 

 

I'm tempted to "roll the dice" and see if I remain PCRU until the trail begins.  That also means, however, that I'll be off Gleevec until the 21-day follow-up lab to ensure I'm still PCRU.  BTW: I've been PCRU more than a decade now, maybe 11 years or so.  I'm thinking rolling the dice might be worth the gamble. 

 

Any thoughts?

roll the dice AllTheseYears .. if you can't hold PCRU for a couple of months without your daily dose of Gleevec, it isn't going to matter whether you are in the study, or not .. there are still 5 full months before the end of the year ... and a whole new Medicare "out of pocket expense .. donut hole" begins

 

PS: For 2016, the Medicare Donut Hole will be $3,310 to $4,850.

 

how is your Medicare Advantage drug coverage structured?

 

Mine is, no initial deductible, 25% of drug cost until the donut hole is reached, and $12/Tier 5 Rx in catastrophic phase.

[Buzzm1]

Hi gerry, Brain fog is my main complaint and I'm only on 20mgSprycel. I read the pamplets that come with my other meds a lot of them say confusion disorientation memory loss dizziness I'm afraid I'll get a dui the next time I walk into a grocery store. I.m afraid to drive anymore I try to tell my doctors but they all think I'm nutz! I need some mind exercises to help me concentrate better. Any Ideas, I should get a job or volunteer somewhere but I probably would forget where I'm supposed to go . Billie                Have a good day

 

Obviously I still cant sleep, it's been a year now.PA says today maybe I need a sleeping pill, yeah right I really need another pill to take UGGH!!!!!!!

Like you Billie, I'm not getting needed sleep .. feeling wired and after laying awake for an hour, or two, I usually end up getting out of bed and sitting on my computer for a few hours before being able to sleep for a few hours.  Wondering if it has anything to do with my recent TKI dosage reduction?  Remembering the early days of this illness when I would fall asleep in one minute, or less, and do it multiple times a day.  Lack of good sleep is rapidly taking a toll on my health and I'm hoping I get beyond this pdq.  Have lots on my mind, which is likely part of the problem, but probably not nearly as much as you do from what you have been saying.  

[chriskuo]

If you are not getting enough sleep, see your doctor about prescription sleeping aids. If they get you on a normal cycle, after a short time, you may not need them on a continual basis. The better sleep will help you feel much better.

[Trey]

A-T-Y,

No real risk in stopping now or spread it out 200mg daily for as far as the current supply goes.

[gerry]

The only problem with stopping is that you're still not sure when the trial is going to start. My doc put me on two monthly testing rather than the usual 1 monthly testing, but you need to be a in shorter testing regime than you probably are now.

 

Trey's suggestion about dropping your dosage to 200mg is a good one. I wouldn't stop until you are on the trial. It is also better for their trial as they usually don't want anyone that has stepped outside the specifics for the trial.

 

The CML comes back at a fast rate in that first six months, so you're better to be taking some until you start the trial.

I asked my doc about the speed of the CML returning once past the six months, he told me it returns to the chronic phase speed.

 

One thing to keep in mind, we are never cured, I know of someone who has been off for nearly 10 years and is still getting very low levels of CML showing up.