67 replies to this topic

[gerry]

Are you able to contact the docs involved in the trial and talk to them about your Gleevec, they might hopefully supply some until the trial begins.

[Gail's]

I'm with you, Gerry. I wouldn't want to do anything that might screw up my chances to meet the criteria to be in the trial. I wonder if LLS could be of assistance since it's a one time thing and for a very good cause.

[AllTheseYears]

Thank you for your comments; a lot to consider.  For sure, I don't want to screw up my chances of being in the LAST Study.  Thinking I'll need to bite the bullet and buy Gleevec.  However, if anyone knows of anyone who has any Gleevec that he/she can't use, please let me know.  Legally, I'm fairly sure it can't be sold, but giving away, it seems to happen often.  I'm contacting LLS and the trial coordinators, also.

[Billie Murawski]

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.  

Hi Buzz this is miserable isn't it, oh we all have brain clutter how come we can't control it like normal people. Normle people on this board never gonna happen, If I really can't unwind I;ll take a half of xanax but that doesn't help at all either UGGH!

[Buzzm1]

Thank you for your comments; a lot to consider.  For sure, I don't want to screw up my chances of being in the LAST Study.  Thinking I'll need to bite the bullet and buy Gleevec.  However, if anyone knows of anyone who has any Gleevec that he/she can't use, please let me know.  Legally, I'm fairly sure it can't be sold, but giving away, it seems to happen often.  I'm contacting LLS and the trial coordinators, also.

How much Gleevec do you currently have on hand AllTheseYears?  If the start date of the Duke trial is not yet firmed up, no telling how much Gleevec you will need to tide you over.  This is definitely not the best time of the year to transition over to Medicare since the donut hole out of pocket calculation ($4700) is based on the 2015 calendar year .... I didn't realize that trials supply the needed medication.

 

Hi Buzz this is miserable isn't it, oh we all have brain clutter how come we can't control it like normal people. Normle people on this board never gonna happen, If I really can't unwind I;ll take a half of xanax but that doesn't help at all either UGGH!

Good news for me Billie, I had a fairly decent night's sleep last night, and then after being up for two hours, went back to bed and slept for four more.   Maybe things are evening out .. good thing, because I'm not a pill taker .. I hate feeling drugged (lol)

[Billie Murawski]

How much Gleevec do you currently have on hand AllTheseYears?  If the start date of the Duke trial is not yet firmed up, no telling how much Gleevec you will need to tide you over.  This is definitely not the best time of the year to transition over to Medicare since the donut hole out of pocket calculation ($4700) is based on the 2015 calendar year .... I didn't realize that trials supply the needed medication.

 

Good news for me Billie, I had a fairly decent night's sleep last night, and then after being up for two hours, went back to bed and slept for four more.   Maybe things are evening out .. good thing, because I'm not a pill taker .. I hate feeling drugged (lol)

Hi Buzz, Glad you had a good night is there anything different you did before going to bed, or some kind of tea maybe, I've tried all kinds of herbal tea, melatonin, brandy,sleepytime tea, brandy, tylonal, brandy, hot milk&honey, brandy, I don't want pills either I think I'll try brandy!                            Billie

[Buzzm1]

Hi Buzz, Glad you had a good night is there anything different you did before going to bed, or some kind of tea maybe, I've tried all kinds of herbal tea, melatonin, brandy,sleepytime tea, brandy, tylonal, brandy, hot milk&honey, brandy, I don't want pills either I think I'll try brandy!                            Billie

 

Thanks Billie .. I didn't do anything differently, or drink anything, before going to bed ... alcohol allegedly has an adverse reaction to sleeping well ... but maybe that depends on how much of it you drink (lol) ... Good Luck ... 

[DebDoodah22]

Magnesium citrate supplements has really helped me sleep better Billie. I have a small glass of milk, some Vitamin D and Mag with a snack of 1/2 banana.Can't do the melatonin anymore or Tylenol orthe herbal teas. I do turn down the house lights, TV and forego the electronic devices an hour before bed. I try to keep to a schedule and ritual...and have decided not to sweat it if occasionally I wake at 445 and can't get back...as long as I get at least six deep sleep hours...and I am working some very long days still...but this usually makes it possible for me to be productive......Another nice thing to do is soak in epsome salts bath...relaxing, good for the skin and muscles,but I don't take the magnesium supplements the nights I soak. If all that fails forego the brandy and enjoy a couple of gasses of Cab.

[Billie Murawski]

Hi Deb, I do take Magnesium for my rls and that helps me get through the night but not get to sleep. This is what's weird (okay consider the source) If I take a Magnesium pill during the day along with all the other 14 pills I have to take it does nothing for my rls the only time it works is when the rls bugs me in the middle of the night then my legs calm down after about 15 minutes. About a week ago I had a teeny weeny to much wine so I haven't had any for a week so that's not the problem. Of course I've had a cold and a uti infection all week even antibiotic doesn't help me sleep. Crap                                                           Billie

[Billie Murawski]

I think I shall weep, if I don't get some sleep.   Do you think I might get published?

[pammartin]

I  will buy and display on my coffee table, Billie!

[AllTheseYears]

Update on my goal to say "Goodbye TKI:"  The cessation trial at Duke Cancer Institute has been postponed again.  Although a wonderful person on this discussion board responded to my plea for Gleevec and sent me a stash...Thank you again!...I realized that stash (even at half-dose) would not tide me over until the trail begins, whenever.  So, my oncologist has agreed to monitor me as I stop taking Gleevec.  First night without a dose was last Friday, and after 13.5 years on Gleevec, not taking it felt really weird.  And scary. 

 

Considering that I've been PCRU for about a decade, my onc said he needs to see me only every 3 months; I return for a checkup in January.  I've convinced myself that if anyone can hold a response a while, it should be me.  Right? Maybe a very long while?  Fingers crossed. My last blood work was all normal, after months on half-dose (200mg).  Still awaiting PCR test results.  I'll keep you updated. 

[gerry]

Good luck with stopping.

 

I've worked with my own doc for stopping as for some reason I would have needed to travel interstate at my own expense to be involved in a trial.

In November I will have been off for two years. I had/have blood tests every two months and see doc every four months.

Keeping fingers crossed that you get through the first six months, Plus I'm aware that some people do get the occassional blip after stopping, so if that happens don't panic too much, it has to be a trend.

[AllTheseYears]

Gerry, Thank you for your words of support.  I need them. I'm glad to know that you've been off your TKI (Gleevec?) for two years.  That's a worthy goal for me.  Now, I'm keeping a "Goodbye TKI" diary to chronicle changes after stopping.  Already my skin is smoother and I'm sleeping better; but, alas, I have bone pain in my left shin.  Do you know if there is such a thing as "TKI withdrawal?"

[Gail's]

Alltheseyears, I like Scuba's approach for stopping. His doc is testing monthly to make sure he stays pcru. If you're very worried you could ask that of your doc. Will it effect your trial participation to be off before the trial begins?

[Trey]

ATY,

There is a TKI drug withdrawal.  It makes sense that because our body needed to adjust to them at the beginning, that it would also need to adjust to not having them.  That is because the body adjusts to having the off-target kinase inhibitions.  Those adjustments must be unwound after stopping.  That is why it is better to reduce dosage before going into a TKI cessation program.

[Buzzm1]

ATY,

There is a TKI drug withdrawal.  It makes sense that because our body needed to adjust to them at the beginning, that it would also need to adjust to not having them.  That is because the body adjusts to having the off-target kinase inhibitions.  Those adjustments must be unwound after stopping.  That is why it is better to reduce dosage before going into a TKI cessation program.

I hear you

 

my Gleevec dosage

150mg Oct. 18, 2015

200mg July 17, 2015 

250mg May 5, 2015 

300mg Dec. 7, 2014 

400mg July, 2011 PCRU

400mg Feb. 2, 2010

[gerry]

Gerry, Thank you for your words of support.  I need them. I'm glad to know that you've been off your TKI (Gleevec?) for two years.  That's a worthy goal for me.  Now, I'm keeping a "Goodbye TKI" diary to chronicle changes after stopping.  Already my skin is smoother and I'm sleeping better; but, alas, I have bone pain in my left shin.  Do you know if there is such a thing as "TKI withdrawal?"

 

Hi ALT,

 

Yes it was Gleevec.

Diagnosed June 2010 400mg Gleevec

PCRU May 2011

Dropped to 300mg July 2012

Stopped Gleevec 19 Nov 2013

Remained undetectable since.

 

Brain fog disappearing and skin bumps clearing up were the first things that happened to me. Normal hair growth returned after about a year of being off. I had started to get a bit of joint pain towards the end of taking the 300mg. Plus had had on going tendon issues over the 3 years, even on the 300mg, Tendon issues have disappeared, though I still get the occassional cramp, but have put that down to the BP med I have had to start taking as I think it has a small amount of diuretic in it. Interestingly I have had cholesterol turn up again now I'm off the Gleevec. I continue to get a small amount of night sweats at night, but I'm going through the menopause years, so don't connect it with a return of the CML. Don't sleep all that well as my heating system is readjusting with the menopause. lol 

 

About a third of the people on the FB site I'm on appear to have joint pain, age related, assistance from the Gleevec with RA types of issues or as Trey has commented about TKI withdrawal not sure. Fluid retention is another issue for a smaller number of people,

 

We have had people have to restart their TKI as the CML has returned and they have lost MMR. They have restarted and from the ones that have kept in contact, the CML is once again under control.

We also have a number of our members who have low level CML blips, which is why I don't think it ever disappears/dies off.

There is also thought that once you are through the initial six months the CML will return to a chronic disease. I still haven't managed to get my doc to move my tests out to three monthly yet, but I might talk him round in another year or so.

 

I also know that if it returns I will be back on Gleevec.

 

I doubt you would be allowed to particpate in a trial now as you would be outside their protocols with your stopping. But as long as your doctor follows similar protocols to the trials it should be okay.

 

I continue to hope that they come up with cure for everyone.

[AllTheseYears]

Just to clarify:  I'm not a candidate now for the cessation trial and will not be participating; I'm stopping Gleevec totally under the supervision of my oncologist.  He feels comfortable monitoring me only every 3 months, unless problems crop up.  He never mentioned  tapering off on my dosage, nor did he mention the possibility of "TKI withdrawal."  I feel more or less on my own during my own personal clinical trial. 

 

Gerry, thank you for informing me about your trial experience.  This is most helpful and encouraging.  Right now, my bone pain and increased joint pain are big issues.  Think I have less anxiety, though. I can't say if I've experienced brain fog on Gleevec (been taking it so long, 13.5 years, I might have grown accustomed to it), but I surely am looking forward to the possibility of having more hair!

 

Above all, I'm interested in what happens when I stop TKI. I hope my experience, as well as the experiences of others in their "personal trials," and in the official trial, lead to improved protocols.  I think I spent way too much time on an expensive, sometimes hard-to-get drug with big side effects that I might not have needed for many years. 

[scuba]

Just to clarify:  I'm not a candidate now for the cessation trial and will not be participating; I'm stopping Gleevec totally under the supervision of my oncologist.  He feels comfortable monitoring me only every 3 months, unless problems crop up.  He never mentioned  tapering off on my dosage, nor did he mention the possibility of "TKI withdrawal."  I feel more or less on my own during my own personal clinical trial. 

 

Gerry, thank you for informing me about your trial experience.  This is most helpful and encouraging.  Right now, my bone pain and increased joint pain are big issues.  Think I have less anxiety, though. I can't say if I've experienced brain fog on Gleevec (been taking it so long, 13.5 years, I might have grown accustomed to it), but I surely am looking forward to the possibility of having more hair!

 

Above all, I'm interested in what happens when I stop TKI. I hope my experience, as well as the experiences of others in their "personal trials," and in the official trial, lead to improved protocols.  I think I spent way too much time on an expensive, sometimes hard-to-get drug with big side effects that I might not have needed for many years. 

 

Alltheseyears .... It would be best for your doctor to monitor you monthly at first to catch any loss of response should it occur. Since you have been PCRU for so many years chances are quite good you outlasted any residual CML! And it's probably true that it would take months and months for any renewed CML development to reach the detectable stage.

 

Regardless - your risk is low - like zero of significant progression until your next test. Congratulations on being PCRU for so long! Great achievement.