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How to convince doctor to lower dose?


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#1 Taylor

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Posted 20 March 2015 - 08:07 PM

Hi everyone,

 

Been a while, I haven't had a computer in some time so for ease I haven't posted much unless I have to. I've been reading every day though.

 

I'd like to ask advice on how to convince your doc to lower your dose. I have a great doctor, both professionally and personally. He is not a CML specialist but he is an excellent hem-onc and he seems to keep up on CML pretty well, reads some studies like STIM trial, etc. PCRs are always conducted on time, no extra BMBs or wacky things that you see here with some of the others. Pretty by the book with up to date protocols.

 

That said, I would like to lower my dose but whenever I discuss it, he does not want to go that route because the trials are not conclusive or haven't yet been as promising as many docs would like.

 

I was originally on Tasigna and reached PCRU in seven months. I have been PCRU ever since, save for one or maybe two statistical blips -- I will be PCRU for 4 years in September. We switched to Sprycel 100mg a year ago because I had two episodes of a-fib, a lot of palpitations and other heart flutters, always felt my heart was working too hard, etc. Now that I'm on Sprycel, I basically have zero daily side effects, although sometimes I cramp or get sore.

 

Even though I'm side effect free, I would love to try 70mg for a while and see what will happen. I am under 30 and am on this medicine and also a beta blocker (which I also want to get off, because I think I needed it for Tasigna but not anymore with Sprycel). I just don't like the idea of so many drugs in my body at my age, and I don't want to get caught with a sudden PE or get dxed with PAH out of no where because I'm on a dose I don't need.

 

I'm not trying to get off completely, at least not for several more years. I would just like to see how low I can go.

 

Any suggestions on how to discuss this sort of thing?



#2 Trey

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Posted 20 March 2015 - 10:13 PM

It is easier to ask for forgiveness than to ask for permission.



#3 Taylor

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Posted 20 March 2015 - 10:23 PM

True, I kind of thought about that, but I couldn't get my hands on 70mg. I'd have to cut my 100s in half and try 50.

#4 dede5

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Posted 20 March 2015 - 11:36 PM

You probably already know this, but the directions caution not to 'break, crush, or chew'. Don't know why. Just my two cents, for what it's worth.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#5 scuba

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Posted 21 March 2015 - 05:23 AM

True, I kind of thought about that, but I couldn't get my hands on 70mg. I'd have to cut my 100s in half and try 50.

 

Asking your doctor for "permission" is asking him to go off protocol and take "risk" with you. He has too much liability doing that and it's not his life. Easier for him to tell you to stay on plan than to "experiment". You are probably learning more about CML than he knows. You and the insurance company pay him to follow protocol invented by others. He did not write the rules - so he won't break them.

 

But you can take charge of your life and treatment. So far the Government hasn't taken that away from you - yet. But you have to believe in what you are doing and then do it.

 

Some facts:

 

1. 40% of CML patients in the STIM trials have had no relapse following drug cessation after two years PCRU.

2. Zero patients advanced when relapse did occur (in the 60%) and drug therapy was resumed. They returned to PCRU.

3. Studies have shown that some patients in MMR (PCR <= 0.1%) have been able to maintain MMR without progression and without TKI.

4. Patients with quick achievement of PCRU (< 1 year from diagnosis) have greater remission rates without TKI than those taking longer.

 

 

Some thoughts:

 

If you want to lower your dose and feel you know what you are doing - then lower your dose. Convert your 100mg prescription into 50 mg pills. And try 50 mg. as your initial test. After your 3 month PCR is taken and you are still PCRU (which you will be), you can decide whether to stop. At that point you will need your doctor to know because your frequency of PCR testing should go to one month at a time. He'll want to know why you are doing that. And then you tell him YOUR plan, not his plan. At that point you want him to watch from the sideline (he gives you access to the lab process). If he is uncomfortable with that, you'll need a new doctor. Perhaps he can enroll you in a "cessation" trial to cover his liability. 

 

Those who write the NCCN guidelines will work with you - those who can only follow the NCCN guidelines will not. I don't blame them - it's the malpractice/liability world we live in now. 

 

You have achieved PCRU in 7 months and have been PCRU for 4 years. You are an OUTSTANDING candidate to stop Sprycel altogether. I have taken years to get to PCRU and then just barely and on only 20mg Sprycel; I still have myelosuppression and I decided to stop taking any TKI to test durability of PCRU and see if I can get rid of this myelosuppression by eliminating the drug. I have an alternate theory on vitamin D and Curcumin as a way to help me maintain remission, but I put my chances at 50-50. In your case I would bet 90-10 you succeed. Get your vitamin D level up to high normal and go for it. The only thing that will happen is you lose your PCRU and have to go back on the drug in order to regain PCRU. But then you will have your answer. Risk of stopping in your case is ZERO. There have be no patients - none - reported whose disease advanced and failed to respond to treatment once PCRU was lost following cessation - none. It's the reason why they continue cessation trials in the first place. These trials would have been abandoned if they led to bad outcomes. As recently as two years ago - the CML world absolutely was against dose reduction - now dose reduction is part of the guidelines for side effects management. 

 

The best thing that will happen is you become drug free and CML free - functionally cured. What a feeling that would be.

 

One of our long term Forum members, Mr. Trey,  has studied CML extensively and knows more than most Oncologists in the field. Mr. Trey has been PCRU for many many years. He has cut his Gleevec dose and is still PCRU. But he is also chicken (yes Trey - you are a chicken) and won't stop taking his drug to test his own PCRU durability. Even with his outstanding knowledge of the facts above, he can't take the risk. Because he fears the disease coming back. It's a fear that I do not have, but he does. No one can blame him - he has his reasons and comfort level to deal with. But he did cut his dose. He probably had night sweats after doing that - I can just imagine.

 

No one will take the risk for you. Only you can do that. But the risk is small. Very small indeed. That's the good news.


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"


#6 Marnie

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Posted 21 March 2015 - 08:01 AM

I cut my Sprycel tabs, no problem.  I'm still doing it to use up some old 100mg.  Much easier now that I'm on 50mg.  When I was on 70, I used a razor blade and a powder scale (for measuring gun powder).  My doc doesn't know. . .I doubt that he would be impressed, but that's his problem, not mine.



#7 dede5

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Posted 21 March 2015 - 10:40 AM

I cut my Sprycel tabs, no problem.  I'm still doing it to use up some old 100mg.  Much easier now that I'm on 50mg.  When I was on 70, I used a razor blade and a powder scale (for measuring gun powder).  My doc doesn't know. . .I doubt that he would be impressed, but that's his problem, not mine.

Marnie, this is of great interest to me. Can you tell me how long you've been doing that? I've really wanted to try that, but I'm not a risk taker. I'm one of those people who didn't removed mattress tags because it says it's illegal to do so. I would love to know more, such as: how long, how much improvement from side effects, and are your lab results still the same? Any info would be appreciated.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#8 Marnie

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Posted 21 March 2015 - 12:52 PM

Here's my documentation...probably more info than you want:

 

Thoracentesis  11/27/2013

1.6 liters of fluid extracted.

Stopped Sprycel for 9 days.  (took 1 20mg tablet after 5 days)

Restarted 100 mg Sprycel 12/6/2013

Headache

Rash on scalp disappeared after 2 days off Sprycel.

Rash on hairline disappeared after 4 days off Sprycel.

Rash/scabbing in ears disappeared after 7 days off Sprycel.

 

12/6  100 mg

12/7  100mg

12/8  100 mg

Rash reappeared on hairline and in ears.

12/9  split 100 mg tablet 29.8 mg plus 50 mg tablet = 79.8 mg

12/10 took larger split at 70.2 mg

12/11 70.73 mg

12/12  79.27 mg

12/13  70 mg (remaining piece = 26 mg)

12/14  26 mg + 50 mg = 76 mg

12/15  22 + 50 = 72 mg

12/16  75 mg

12/17  61+ mg ( remaining piece  26.8)

12/18  72.5 plus crumbs

12/19  26.8 + 27.5 + 20 = 74.3 mg

12/20  80 mg

12/21 - 12/26  70 mg with 2 days of 100 mg

12/27  70 mg

12/28  68 mg (28 mg cut)

12/28  77.5 mg (22.5 mg cut)

12/30  71 mg (26 cut)

12/31  28 + 22.5 + 26 = 76.5 mg

1/1 through 1/5  70 mg (50 mg pill plus 20 mg pill)

1/6 stopped Sprycel, chest x-ray 1/8 showed pleural effusion.

Rash on neckline improved after 2 days off Sprycel.

1/21/14 Restarted Sprycel 50 mg (15 days off medication)

 

 

Pleural Effusion (#3)  Thoracentesis (#2)  8/4/14

 

Stopped Sprycel 7/28

PCR test 8/12 (2 weeks off sprycel) undetectable

Continued off Sprycel (took 50 mg two consecutive days - 8/ 20 and 21) until present

 

This is old data, so the last entry "off Sprycel until present" is not true.  I've been back on 50 mg Sprycel, and my PCR did go up after being off Sprycel for nearly a month.  I am currently on 50 mg, and go back and forth between using new 50mg pills and splitting old 100s.  My PCR is not back to undetectable, but is slowly working its way there.  I think that if I took 100mg, I'd get back to PCRu quickly, but would probably have pleural effsion issues again.  So I'm very comfortable doing 50mg and splitting old pills.

 

PS.  Part of the fun (as a math teacher) was using the powder scale to measure the mass of the whole pills, then cut and re-measure and calculate the mass of the dose I'd be taking.  I don't have any clue how the mix of medicine/binder/whatever works.  So unless the "ingredients" they use are mixed perfectly throughout the tablet, my data is probably meaningless.

 

I do NOT know if my doctor would approve.  I decided it was better to not mention it to him.  My body, my pills, my decision.  My consequences if there were any.

 

Your decision to make.

Good luck,

Marnie



#9 dede5

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Posted 21 March 2015 - 01:07 PM

Thank you for the info. I would love to find a way to possibly get rid of my A Fib. Didn't think this was an option, but I will definitely consider it.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#10 Trey

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Posted 21 March 2015 - 10:12 PM

Mattress tags may be removed by the ultimate consumer.  They must not be removed by vendors along the way.  You have been led astray by the mattress tag mythology perpetrated by the Abdominal Snowbear of Upper Slavovia.

 

The  "thou shalt not crush, mutilate, spindle, blah, blah" TKI tablets is another myth.  The issue was supposedly that pregnant women should not handle TKI drugs for fear of harm to the fetus.  A laughable assertion.

 

Marnies' mixture of TKI drugs and gunpowder is a typical Colorado "Live in Wyoming, fish in Wyoming" bias against border encroachment by The People of the Treeless Plains.  'Nuff said.

 

What was my point anyway?   .......... Oh yeah. 

 

Only a highly skilled gunpowder surgeon could do this:

12/31  28 + 22.5 + 26 = 76.5 mg



#11 Marnie

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Posted 21 March 2015 - 10:29 PM

The math works for me. . .that's how we teach it here in Colorado.

 

The real question is:  How are the sharts affected if you cut the pills using a gunpowder scale. . .

 

Better duck and cover.



#12 gerry

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Posted 21 March 2015 - 10:31 PM

Hi Taylor,

With your response, plus your age, I would definitely be looking to lower dosage or get on a cessation trial. I was lucky with my doc that he did come round to my suggestions, but he also realised that if it didn't work I knew I would be back on the drug, no arguments.



#13 Billie Murawski

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Posted 21 March 2015 - 11:21 PM

The math works for me. . .that's how we teach it here in Colorado.

 

The real question is:  How are the sharts affected if you cut the pills using a gunpowder scale. . .

 

Better duck and cover.

Marnie will you balance my checkbooks for me, every month the bank screws up, I know I have more money than that I still have lots of checks left. Maybe if a professional (you) shows them the error of their ways,it will convince them that they are wrong.



#14 rct

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Posted 23 March 2015 - 07:59 AM

Taylor:

 

In 2008, after more than a year PCRU, my Mrs just suddenly tanked her white counts, particularly the ANC as a number and the ANC proportionate to WBC. 

 

At that time Neupogen injections were the answer, get her counts up so she can keep taking Gleevec.

 

After a year of that, our questions about what we could do about this were greeted with blank stares off into the distance as the Top Onc at the Award Winning University Hospital waited for the next patient.

 

Another year of that, we moved on to another Top Onc at another Award Winning University Hospital.  After a year of nothing but "use Neupogen and keep taking 400 a day", we moved on.

 

Two plus years at a Top Cancer Treatment Center Not Affiliated(at that time) With Any Award Winning University(it is now), no discussion whatsoever.  "Take Neupogen or don't, we don't even really know what the white counts mean".

 

All while PCRU.

 

Three years ago we found a doc at a regular hospital.  He has three CML patients.  He listened to us and asked Mrs what SHE wanted to do, within reason, with reasonable medical supervision.  She wanted to try 400/300 alternating days.  He was fine with that, with no increase in testing urgency, because it would take a long time to see any change anyway.

 

Now she is at 100 on odd days, 200 on even days, still PCRU, major change in side effects.  But still crappy white counts.

 

The point is only that if your doc won't, they won't.  If they are medically supervising someone doing something that isn't supposed to be done and that person has a problem, then he has a real problem, and it is far more than whatever liability everyone wants to talk all pro about like we're all lawyers.

 

Everybody here talks all about how cool it all is and that patients know better and all that, and I get it, I do see that, I do know that and I love all of the patients here.  The doc, however, explained to us just how horribly wrong it all goes when it does go all horribly wrong, something we don't talk about here.  This isn't diabetes, it isn't migraines.  It's cancer, it's already all gone all horribly wrong, and when it gets angry and ugly it is bad.  And then he sits there having to watch this while knowing that it is because he medically supervised someone doing something they really shouldn't.  We don't even know why this stuff works, much less why it all goes so bad when it does.  Just go see the Asian CML boards, you'll see how bad bad is.

 

You will have to look around and find someone willing to do it with you, get whatever testing you work out, and you need to be willing to follow his or her advice if it changes even a little.  We've had a couple of hiccups that we've had to test through, and it has all gone well so far.

 

Good luck to you, you are far too young to have to do this.  The less you can take the better, for sure, but getting there really can suck.

 

rct



#15 scuba

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Posted 23 March 2015 - 08:34 AM

From rct:  "It's cancer, it's already all gone all horribly wrong, and when it gets angry and ugly it is bad."

 

CML gets angry when Blasts get out of control. CML is angry at the beginning of treatment. For folks in PCRU there are no Blast cells. During the STIM trials no one who lost PCRU progressed and and in the TWISTER study:

 

http://www.bloodjour...so-checked=true

 

Most patients with chronic myeloid leukemia (CML) treated with imatinib will relapse if treatment is withdrawn. We conducted a prospective clinical trial of imatinib withdrawal in 40 chronic-phase CML patients who had sustained undetectable minimal residual disease (UMRD) by conventional quantitative polymerase chain reaction (PCR) on imatinib for at least 2 years. Patients stopped imatinib and were monitored frequently for molecular relapse. At 24 months, the actuarial estimate of stable treatment-free remission was 47.1%. Most relapses occurred within 4 months of stopping imatinib, and no relapses beyond 27 months were seen. In the 21 patients treated with interferon before imatinib, a shorter duration of interferon treatment before imatinib was significantly associated with relapse risk, as was slower achievement of UMRD after switching to imatinib. Highly sensitive patient-specific BCR-ABL DNA PCR showed persistence of the original CML clone in all patients with stable UMRD, even several years after imatinib withdrawal. No patients with molecular relapse after discontinuation have progressed or developed BCR-ABL mutations (median follow-up, 42 months). All patients who relapsed remained sensitive to imatinib re-treatment. These results confirm the safety and efficacy of a trial of imatinib withdrawal in stable UMRD with frequent, sensitive molecular monitoring and early rescue of molecular relapse.

 

The key is to return to taking the drug if CML re-emerges. The risk, as reported in the studies above, is zero. Many oncologists are not even aware of these studies. Your wife has been PCRU for more than two years. She deals with low counts which have a danger all their own. Seems "reasonable" to try cessation in order to get the counts back up and monitor for UMRD. But I fully understand the psychological fear of CML: "It's cancer, it's already all gone all horribly wrong, and when it gets angry and ugly it is bad." This is a great quote.

Not all cancers are the same. Otherwise there would be one treatment. 


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"


#16 PhilB

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Posted 23 March 2015 - 11:08 AM

Marnies' mixture of TKI drugs and gunpowder 

I can just imagine the obituary in a few decades time:

 

"Marnie, whose pioneering research into mixing TKI drugs with gunpowder was hailed as a major advance in the treament of CML, passed away at the age of 103 leaving a loving family, a wide circle of friends and a fifteen foot hole in the crematorium wall"



#17 Marnie

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Posted 23 March 2015 - 04:17 PM

Hey, at least I didn't put a hole in the wall riding a refrigerator down the basement stairs!!



#18 tazdad08

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Posted 25 March 2015 - 10:31 AM

Its so great that we can mix sarcasm and laughter into this matter. I am on Tasigna.. started it almost three years ago. I have been lowering my dose since then. I am now taking 600mg per week. I take a 200mg pill three times a week...roughly every other day. still undetectable.  :D


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#19 janne

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Posted 30 March 2015 - 04:22 PM

Its so great that we can mix sarcasm and laughter into this matter. I am on Tasigna.. started it almost three years ago. I have been lowering my dose since then. I am now taking 600mg per week. I take a 200mg pill three times a week...roughly every other day. still undetectable.  :D

 

This is very interesting.  I have two questions: How long were you at PCRU when you started this 3x weekly dose ? Second, how long did it take you to reach PCRU and at what dose did you achieve PCRU on ? (i.e. did you lower your dose prior to achieving PCRU? ) Thanks ! 


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#20 pammartin

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Posted 30 March 2015 - 04:46 PM

Marnie, you continue to be my hero.  A gun powder scale and razor blade.  I never cease to amaze me.

 

Cutting Sprycel; I had two separate incidents with medication shortage because of delivery failure and insurance coverage.  I either had a half year back up of med or I ran out before we could get the next order authorized.  Feast or famine.  I assumed (there is that word) half of a Sprycel every day was better than no Sprycel for several days.  I cut the pill in half, and I wasn't always accurate.  I figured within the two day span I took 100 mg. 






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