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#21 gerry

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Posted 29 November 2016 - 06:51 PM

It is the thing you have to keep in the back of your mind when you do try cessation. I've only just gotten rid of my remaining gleevec due to it being out of date. I kept it just in case it raised its head again. My plan if it returns is to knock it down again with full dose, then reduce to the lowest possible level and restart the two year clock again for cessation.
Hope your restart has minimal side effects.

#22 cleocans

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Posted 30 November 2016 - 07:35 PM

So my onc just called about my results.  He wants me to wait until the first of the year and test again.  He thinks it's just a blip and the next one will be down again.  

 

I guess waiting one more month will be okay.



#23 gerry

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Posted 30 November 2016 - 07:46 PM

Blips are not usually loss of MMR, I'd probably ask for a test in two weeks rather than a month. When it is on the return it comes back pretty hard and fast, so for me, I'd rather restart at a lower level.

 

I'll keep my fingers crossed for you.



#24 cleocans

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Posted 30 November 2016 - 08:00 PM

Yeah I'm not sure of how comfortable I am with this.  He has done a lot of cessation trials and has 24 (not including me) on it right now.



#25 Buzzm1

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Posted 30 November 2016 - 08:04 PM

Cleocans, during the assorted trials, for those who relapsed, the average time to reach loss of MMR, was 3.8 months, so I was surprised by your reading of 0.33 after just two months of cessation.   That's the main reason I decided to wait three months before testing.  Like Gerry, I am surprised at your onc wanting to wait another month before retesting for confirmation.  


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#26 cleocans

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Posted 30 November 2016 - 08:15 PM

Cleocans, during the assorted trials, for those who relapsed, the average time to reach loss of MMR, was 3.8 months, so I was surprised by your reading of 0.33 after just two months of cessation.   That's the main reason I decided to wait three months before testing.  Like Gerry, I am surprised at your onc wanting to wait another month before retesting for confirmation.  

 

Maybe that is why he thinks it is a blip or something and waiting a month for retest.



#27 Buzzm1

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Posted 30 November 2016 - 08:30 PM

Maybe that is why he thinks it is a blip or something and waiting a month for retest.

Hoping he is right; wishing the best for you.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#28 cleocans

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Posted 30 November 2016 - 08:32 PM

Thank you!  I was hoping for a stress free holidays, sigh.  I will do my best to not worry, but I think we all know that is not an easy thing to do!



#29 gerry

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Posted 01 December 2016 - 12:12 AM

Don't stress (too much) if your doc has managed a number of patients already who have tried cessation then he would have had a 50/50 rate, so would have a good knowledge of what is okay. :-). I just think for me if I have to restart then I want to know about it ASAP. So I can start to work my way towards reducing and stopping again sooner. I always felt better with a plan in place when I was on the TKI.

#30 kat73

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Posted 01 December 2016 - 11:31 AM

cleoclans - The only way I've ever found to deal with waiting, worrying and all the stress of wondering what's going to happen - SHORT TERM - is this:  Allow yourself a certain amount of time to think (which includes worrying, researching, questioning, and feeling) and then, arbitrarily, DECIDE to stop.  Just cut it off.  Say to yourself, "I have thought about this enough for one day.  I will think again tomorrow.  The answers will eventually come and I will decide what to do about things then."  The first question to answer is, do I trust my onc and will I wait for the test in a month, or not?  I personally think you should trust him and wait.  You will get a better answer, waiting longer.  You will not be jumping to blast crisis with an extra two weeks.  If, however, that ugly thought has control of your train, then by all means address it with him and ask to start back and/or retest tomorrow.

 

If you decide to wait, then try the technique I outlined of controlling the amount of time you will devote to worry.  This is not a good technique for longterm worry, although it has its place.  But, short-term, like waiting for a biopsy result or a PCR, it puts you in better shape emotionally for whatever you will have to deal with when it finally happens.  And it will make you available for any cheer you can glean from the holidays.  It takes practice to keep your mind from drifting to the subject, but just every time it does, say, "nope, not going there," and think of something else.  Unless, of course, the random brilliant idea presents itself! :)


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#31 cleocans

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Posted 01 December 2016 - 12:08 PM

That was my new thought today Kat when I woke up!  I am not going to die in one month, well from CML anyways.   If it goes higher it will come down again.  I feel great right now, so much more energy, no uncomfortable bloating.  I am going to ride this for a month and enjoy!  My regular blood work was perfect.  

 

My onc only wants the best for me, I do no believe he would not put me in danger.



#32 Buzzm1

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Posted 01 December 2016 - 12:39 PM

Regarding restarting, I'll cross that bridge when, and if, I come to it, but as far as I am concerned my days of taking Gleevec 400mg ended in December, 2014, when I began dosage reduction after being on Gleevec 400mg for almost five years and PCRU for most of it; that was probably a couple of years too long to be on a full dose.  Advanced age, and a heavy TKI dose, wasn't a good combination with respect to my health, as I now find myself dealing with kidney and vascular problems.  If I need to restart Gleevec it will be at no more than 200mg, no matter that it might take a little longer to regain PCRU.   For most of us, when our CML is at low levels, it doesn't require a high dose of TKI to combat it; less TKI is a healthier choice.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#33 kat73

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Posted 01 December 2016 - 05:07 PM

cleoclans - That sounds GREAT!  Carry on, and keep us posted.

 

Buzzm - Boy, I hear ya.  Gleevec clobbered my kidneys within the first 4 months and I have had to take Vitamin D and Calcitriol for secondary hyperparathyroidism because of it.  It makes no sense that off target hits on healthy cells for decades and decades have no consequences.  I've never seen in the literature or had a doctor explain how the cells do a workaround or otherwise do without the tyrosine kinases they need to function.  I don't think they know.  They just assume, since they don't see much immediate damage that can't be reversed, that the body will adapt.  But they don't know what happens after years and years and years of the healthy cells making do - I'd think they'd get very tired out, maybe quit.  And there are many examples of the ripple effect in the body's systems - a hormone imbalance here, a vitamin deficiency there, fluid where it ought not to be, etc and years later the effect shows up in the heart, or the lungs or who knows, the toes!  (Or the brain.)  Since I took the first Gleevec, I've never felt truly well or normal, not in 7 years.  I always feel "off," in a lot of different ways.  My goal is to reduce the Sprycel dose as far down as possible, and to get off the stuff if ever I can.  I'm also keeping an eye out for a new drug that will tighten to the target and only the target. Ten years, twenty years, thirty years of this interference in our cells and systems CAN'T be benign.  


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#34 cleocans

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Posted 29 January 2017 - 06:34 PM

Well my counts continued to climb so I am back on my meds, 100mg Sprycel.  My January PCR jumped up to 1.7% , yikes!!  I go back the mid of February to see how my counts are doing after 6 weeks back on them.

 

I did not get the headaches again, very happy for that.  My fatigue is back, booo, and so is the excess bloating.  I'm going lower carbs 50-100 grams to help with the bloating.  If I eat too many or the wrong carbs the bloating pushes on my stomach and my bra doesn't fit, both of those things are very uncomfortable.

 

Once I get back to PCRU I am hoping a reduced dose will work for me.  Although cessation didn't work for me I am glad I gave it a try.



#35 scuba

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Posted 30 January 2017 - 08:27 AM

Cleocans - I was sad to learn this cessation attempt didn't work ... but it was worth a try. You had a clear result in that CML returned almost immediately. It should also drop right back down as well. Once you re-achieve PCRU - perhaps your next test is dose reduction. You may only need a little bit of Sprycel to keep you at or near PCRU. I am doing it on only 20mg... you may be able to as well.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#36 kat73

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Posted 30 January 2017 - 11:03 AM

Cleoclans - I am so sorry you're having to deal with this disappointment, and I hope your PCR plummets now that you're back on the Sprycel.  I also hope you can reduce the dosage soon.  I have a thought about your bloating - are you sure it isn't a pleural effusion?  I kept complaining about tightness in my rib/midriff area - I felt stuffed after eating just a few bites of food, too.  I felt so draggy and lethargic, but that wasn't new, just worse.  Nobody paid one iota of attention.  I finally found out the magic words were "short of breath," which I still feel ambivalent about because I wasn't like people with emphysema or COPD.  But, at any rate, a chest x-ray was ordered, stethoscope positions were lowered and dulled sounds heard, and a moderate pleural effusion was found.  That was the cause of the "bloat" and a great deal of the fatigue. 

 

I am very worried that my PCR profile will be like yours.  I have been off the Sprycel for 3 weeks and will be off for 3 weeks more, until a final chest x-ray HOPEFULLY confirms that the rest of the pleural effusion is gone.  (It's been reduced by half.) I am determined to not start again until there is ZERO fluid detected.  I didn't start at PCRU for 2 years, like you.  I have been stable for 4 years around MR3.5 - 4.  My last two PCR's were at the just detectable level (at or below 0.01% IS).  I've never been off a TKI for this long in 7 years.  In another post, when this incident is in the bag, I will recount how this has gone and what a difference there has been.  But right now, I'm terrified of possibly having to go back to Sprycel at a full  dose!  I have been at 70 for about 5 years and had just wangled my onc down to 50 mg when this effusion interrupted the plan.  For the first time in 7 years I feel good, with no depression or anxiety, full energy, muscles feel strong - my skin's color is even back!  I don't think I could bear going back into that tomb and shutting the door behind me again.  I'm thinking of starting back with the 50's cut in half every other day for a couple of weeks, then a couple of weeks every day, then the full 50 mgs.  I know I'd be off the reservation.  What do people think?


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#37 cleocans

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Posted 30 January 2017 - 01:12 PM

Hey kat73, no it's not pleural effusion.  I had a chest xray early on and it was clear.  The techs were confused as to why I came in to get an xray!  Plus I do not have any shortness of breath.  I actually go running and can breathe fine.  I am not stuffed if I keep my sodium low and avoid the carbs that bloat me. If it's just me and the medicine it's annoying but fine.



#38 roamingdoc83

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Posted 31 January 2017 - 05:14 PM

 

So I am now the 21st patient my oncologist has on the cessation trial.  I go back for my first follow up appt in 2 months.

I had written "outstanding" without reading to the end. Don't let the lapse keep you down. I went off meds for 19 months... and was doing great. Only to find it came back. Hang tough!.



#39 SandyG353

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Posted 08 February 2017 - 06:58 PM

Hi everyone.

A few months ago I posted that my daughter's oncologist was going to take her off of Gleevec because she has been 000 for 7 and a half years.  Then the oncologist changed labs and her numbers were now .007. then .005.   The test done last week shows 000 with the new lab.  If the next test shows 000, he will have her stop the Gleevec. 

Sandy



#40 cleocans

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Posted 20 February 2017 - 04:08 PM

After 5 weeks back on my meds I am down to 0.22% from 1.7% !!  Hoping to be at undetectable at my next appt in 3 months.






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