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2-yr Gleevec 400mg PCR Results : Advice?


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#1 LivingWellWithCML

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Posted 16 April 2013 - 10:28 AM

Hi everyone,

My 2-year FISH/PCR results are in ... nothing earth shattering (thank goodness!), but I would appreciate others' advice / input on my next steps. In short, I've been on Gleevec 400mg since mid-Apr 2011 and have tolerated it quite well thus far. I reached a stable MMR within the first 9 months of treatment & have continued to maintain this level of response through the 2-year point. I realize this is great news to remain stable on the intro dose and to reach the two year point with a continued & stable MMR - it's what I hoped for when I first researched CML after diagnosis. However, Gleevec 400mg doesn't appear to be beating down the disease any further, so I'm wondering if I should consider a change in course now to further minimize risk of problems, or if it'd be best to just stay on the standard dose and press ahead until the next milestone (which will probably be in 6 months). There is much CML wisdom on this board, so I appreciate anyone who's willing to chime in with advice.
 
Here are the results over the 2nd year of my treatment:
 
Milestone     PCR (IS)
15 months     0.043%
18 months     0.124%
24 months     0.082%

I see a hematologist at Emory Winship in Atlanta who is a recognized CML specialist, but his treatment path for me is very conservative and he hasn't been willing to give me other options given the stable MMR - basically, continue Gleevec 400mg and he'll test me again in ~ 6 months. So, I'm starting to lose hope that I can beat this thing down more without either a dosage increase or TKI transition. But given that CCyR is the most important prognostic indicator for survival, I'm wondering if that really is good enough and I should continue with 400mg for the long haul and simply try to stay ahead of the disease. What would others do, and what's the recommended best course given all of the data that's out there?
 
Here are some questions that I'm asking myself as I weigh my next steps into year 3:
  • Given everything we know now re: CCyR + MMR, the benefit of deeper log reductions, and CMR in long-term prognosis and potential remission, how important is it that one focus on reaching deeper molecular response levels into the 3rd year+ of treatment? Given my tolerance to 400mg, does 600mg sound like the appropriate option that I should be seriously considering at this stage? I don't think I need to consider a TKI transition given that I've tolerated and responded well to Gleevec up to this point.
  • When weighing choice of hematologist, how important do you all consider on-site PCR testing in your decision-making process? I'm aware of the blood sample degredation introduced by off-site PCR testing, so I've been really comfortable at Emory because they do all of their testing on-site, and it's a short drive from my home - I don't want to take the convenience and the quality of testing for granted. But if a dosage increase needs to be seriously considered, then I will also need to look at testing methods when evaluating other hematologists - it would impact my options. Any thoughts here?
  • Is staying on 400mg a reasonable course and low risk given that I'm essentially right at the MMR point heading into year three? I look and feel healthy and have been able to maintain an aggressive athletic lifestyle despite taking a daily TKI, so I don't necessarily want to risk a decrease in quality of life that a dosage increase might introduce - especially if it's really not needed.
  • On that front, I exercise a LOT ... I've always felt that it has helped me on my journey, but is it possible that my flat PCRs could be a result of extensive athletic activity (which I'm sure puts my bone marrow under regular stress to pump out RBCs)?
  • I'm not aware of Emory doing plasma concentration testing, but I wonder if there are things I can control to try and safely increase the absorption level of Gleevec in the bloodstream. Acidic environments have been mentioned -- should I consider taking a Vitamin C supplement at the same time, or something else to help? I take the dose with breakfast, which sometimes includes a very small amount of 2% milk in cereal (I mean, literally just a small splash in the bowl), but maybe I should consider drinking watered-down OJ or something else to increase the acidity in the stomach? Other ideas?

Thanks to all of you for continued hope and inspiration, and I look forward to any feedback folks can offer -


Dan

Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 beverly

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Posted 16 April 2013 - 05:51 PM

Diagnosed Sept. 14th 2012 3 days prior to my husband death of a long illness of his own. Also lost mother June same year. I was put on 100 mg Sprycell developed a cough now last Wednesday had 1 litter of fluid removed from left lung area. 1/3 of my lung was being crushed by the fluid a known reaction to that med. I couldn't ben over past a countertop without coughing up foam like on the ocean. I was told I was drowning sort of and if not caught in time my lung could have looked like an orange peal.  My counts were all good but at what price? I also have been told they hope it is and infection in my lung and not cancer. I am on AMOX-CLAV 875 mg for 2 weeks.

I feel like Debbie Downer on Saturday night live and hate that.

I may start going to Mayo Clinic In Jacksonville my daughter lives there tired of the quacks. Not including my oncologist they are good. My Internist was dragging her feet and Cancer doc lit a fire under her and her office to get it done stat. Other internist I fired as I had to remind her I had CML while she told me she doesn't read charts if I come in for shingles and she is the one who sent me to the first blood Dr.!! I had shingles and complained of chest pain cough and she ignored all that. Malpractice small offices have no one to report to and don't care only want to dish out pills. She gave me hydrocdine that didn't work another clue something else was going on.



#3 Trey

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Posted 16 April 2013 - 08:14 PM

You are doing well so there are no wrong answers.  But there are variations of right answers. 

Given all that, most of us are not satisfied with long PCR plateaus.  Short ones are fine, but the long ones such as your 15 month plateau suggest a change could be beneficial.  If it were me, I would increase the dose of Gleevec to 500 or 600mg (split into half dosage twice daily).  The plasma drug level testing will not tell you anything about your circumstance.  You just need a little trial and error.  And you are in a good position so you can afford to try more drug.

If "Doc Emory" is unwilling, then I would get a prescription writer Onc who takes good dictation  since  the options are well within the acceptable range.  Some people "need" their Onc, but you do not "need" Doc Emory.  If you want to do something else perfectly within standards, why should he stand in your way?  The worst case scenario is you back off the higher dose at some point if side effects are an issue.

Overall PCRs at specific places are not that important.  I have had PCRs from at least 3 labs that I know of, some local and some FedEx labs.  When your PCR is low, the lab is not very important.  If trying to maintain good stats on progress in the mid-region or when tracking poor response it is more important. 

I exercise quite a bit, and I  think it helps with side effects.  I take Vit C with my Gleevec and think most people would do well to do the same with any TKI since it can help ensure an acidic environment for good uptake.



#4 GerryL

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Posted 16 April 2013 - 08:19 PM

Hi Dan,

I was diagnosed end of June 2010. I'm now on 300mg Gleevec following a year of PCRU and last six monthly test was continuing PCRU.

  • On your first dot point, I guess the question is are you wanting to get to CMR/PCRU to eventually have a go at stopping your TKI? If not then MMR is a good place to be.
  • In Australia, my blood sample is sent down to Adelaide (another state) for testing, which if I'm correct is where the best testing equipment is in Australia. So I'm happy for it to be sent off there.
  • On the 600mg, I can remember Trey and Josie both saying that it knocked them around a lot. But if you're wanting to get to CMR and don't want to switch drugs, it might be the way for you to go and you might not get any increase in side effects.
  • I'll leave it to someone else to discuss whether intensive exercise impacts Gleevec. I do do a bit of exercise, but doubt whether it would be to your intensity. I've also been able to add weights back into my rountine since going down to 300mg.
  • First thing in the morning I take my iron tablet and 2 vitamin C supplements. I take the vitamin C to help the iron absorption. I also have a bowel of cereal with milk about 15 minutes later and this is when I take my Gleevec. So I doubt your splash of milk will cause any issues.

Not sure if I've been any help with your quandary. ?



#5 LivingWellWithCML

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Posted 17 April 2013 - 07:22 AM

Hey guys - thanks!  This is really helpful input ... I appreciate it.  I'm giving this some careful thought and reaching out to some other locals re: doc recommendations to plan ahead in case I'm not presented an option to increase dosage.  I think I should seriously consider it; however, my wife wants me to stay on 400mg and see if this might be a slow trend downward, because it is a possibility and I'm tolerating the dosage fine.  I still might decide to do that, but at this point I simply want to have the option to increase dosage, so I can make a choice.

What would be the recommended PCR testing frequency at this stage?  3 months or 6 months?

I am also with BCBS insurance and PCRs have always been fully covered, although now I'm worried that I'm going to get an unexpected bill in the mail based on others' recent experience that was shared on the board.  I'm already bracing myself to appeal over and over again.

The Vitamin C supplement recommendation is resonating with me, so I'm jumping on that regimen starting today - thanks @Trey and @GerryL.  Perhaps that can increase uptake a bit further.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#6 Trey

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Posted 17 April 2013 - 08:15 AM

After CCyR, and especially after MMR, PCRs can go to 6 month intervals (although I personally would prefer 3 month cycles until MMR is reached).

Dosage and side effects are different for all of us.  I tried 600mg for a couple months and all my cell counts tanked, but that was only several months into drug therapy.  I believe it would have been a different experience if I had been on Gleevec for over a year, but I don't know for certain.  But I know of a teenage girl who has taken 800mg Gleevec for several years and her counts are very good.  So that is part of the "trial and error" issue I mentioned.  No one can predict exactly what will happen side effects wise with any of these drugs.  And although your PCRs can be at 6 months, you can have more frequent CBCs after a drug increase to watch cell counts. 

Regarding your very vigorous exercise, it generally increases any person's WBCs regardless of CML or not. 

https://docs.google....HCIApLs9MPhZlBQ



#7 CallMeLucky

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Posted 17 April 2013 - 09:32 AM

I may be biased based on my experience with Gleevec but I would not increase dosage.  It may not cause you any problem, but Gleevec can have some long term side effects.  Sometimes once a side effect kicks in it can be difficult to shake it even after going back down in dose.

Maintaining a stable MMR is not good enough for you, if it were you wouldn't be thinking about it and just going about your life, you are asking because it concerns you, I suspect you want to get to CMR and possibly one day consider cessation.  You are young and that is not unreasonable.  I don't think it is a good idea to make decisions based on that because best case scenario only 40% of CML patients may be able to safely stop treatment and that number will probably wind up being lower when more trials are done.  So basing treatment decisions on an unlikely outcome is probably not a great idea.  On the other hand half of living with a chronic disease is mental and peace of mind.  If CMR gives you peace of mind then you have to think about the fact you are in this for the long run.  I think increasing your dosage is a reasonable option, but I personally wouldn't do it.  I think staying the course would be acceptable as well, but again, I wouldn't do it.  If I were you, given your response to Gleevec, I would switch to Tasigna.  Some people might disagree with that, but that is the choice I would make in your shoes.  You can always go back to Gleevec.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#8 LivingWellWithCML

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Posted 17 April 2013 - 10:30 AM

This perspective is really helpful - thanks @CallMeLucky.  So in my shoes, you'd switch to Tasigna because of the risk that a disease burden of ~ 0.1% presents, or for the peace of mind that a deeper molecular response would bring?  That's where I'm struggling a bit ... how risky is it to stay the course on G 400mg given my PCR results?  If I recall, MMR at 2 years post-dx translates to ~ 0.2% chance of progression, yes?


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#9 CallMeLucky

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Posted 17 April 2013 - 10:41 AM

I would change for peace of mind.  Since a negative PCR does not mean the disease is gone you have to be realistic about what the goal is.  Stable MMR appears sufficient for overall survival and progression free survival.  Negative PCR may make you sleep better at night depending on your personality and how you look at things.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#10 LivingWellWithCML

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Posted 17 April 2013 - 12:56 PM

Wow, there's a study for pretty much everything, huh?   So it is somewhat interesting reading this paper re: exercise and WBC increase, because I've had this ungrounded & silly theory that one could exercise a couple of hours after taking the TKI dose and perhaps it could make a deeper daily impact when the medication is at a high concentration while flowing through a faster-moving bloodstream and harder-working bone marrow, so it could expose more of the remaining CML for binding and destruction.

I was very disciplined with that routine over the first year and my PCR went undetectable by the 12 month point.  Then, I got a nasty running injury and had to get ankle surgery, and during my recovery period (basically the last 9 months or so) my PCR went back to detectable and even increased.  It's unlikely that they are correlated at all, but it definitely doesn't look like strenous exercise would have a negative impact on response.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#11 pamsouth

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Posted 17 April 2013 - 01:18 PM

You probably already know this, but I see by the other post that no one reminded you that even if you test were undetectable, you could still ride just under radar, and have a million + leukemia cells, that PCR Testing is not capable of seeing.  You could have a dozen different test and come up with a dozen different answers.  I mean it is a drop of blood they are looking at, just depends on the drop they happen to be look at me.  IF I am mistaken, or someone would like to pick up on these thoughts. Go to it!!

PamSouth

I am just happy to stay in CCYR range for 8 years,  and have a good quality of life, without  low counts or taking other medication.  I have lost 30 lbs thru Jenny Craig.  I dropped my blood pressure pill and only need to take a diuretic ever 2 or 3 days.  IF I continue to exercise and lose weight I probably will not need the diuretic at all. The only other med's I take are 1mg Lorazapam 2x day and 2400 mg daily of fish oil, to help keep my cholesterol an triglycerides.

down.

I never cared to try Sprycel unless it would be at 50mg permanent and my counts went down.  I don't know how I would like Tasigna, with the time of fasting before and after taking  twice a day, but it would only be at a low dose.  I think for me I would only try Sprycel at a permanent 50 mg daily or lower, and if it did not help my counts to go down I would stay with the gleevec.  I feel that most people who encourage the high dose with a poor quality of life and treat side effects with other med's and transfusion or whatever, and their life becomes all about cancer and doctors  and labs and testing....; are probably those who take a low dose TKI of whatever and don't have to deal with the multiple  side effects and  will probably not have to deal with those nasty short/med/long term side effects when they raise their ugly head long term.  Two years after I was on Gleevec I lost my Gall Bladder, Surgeon said no gall stones, looked healthy, it just did not work anymore.  Kidney slightly low probably because of taking diuretics since 1997 that was used in the beginning as a blood pressure pill, but now I am dealing with the long term use of diuretics.  Can cause Kidney failure, Metabolism problems, under-active thyroid etc.

The above is only my opinion, not from a medical doctor, with the exception of the diuretic pill, have been told my 3 cardio doc and one internal med doc that they will ruin my kidneys.  So it seems to me there are a lot of trade off. The less pills/tocity my liver and kidneys have to deal with the better. 

PamSouth


PamSouth


#12 LivingWellWithCML

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Posted 18 April 2013 - 06:27 AM

Thank @PamSouth - your perspective is really helpful as well.  Your successful CML journey reinforces the fact that CCyR is what matters the most, so if one can maintain that level of stable response with minimal dosage & side effects, then that's a great thing in itself.  MMR is icing on the cake, and MMR+ / CMR puts a lot of sprinkles on the cake - and even a chance that you get to eat the cake by carefully stopping therapy without recurrence (probably the worst analogy ever, heh).

My lean at the moment is to stay the course on 400mg and get my next PCR test in 6 months.  I consider myself fortunate because I have a stable MMR, minimal side effects, good quality of life, and I'm in better health/shape than ever - so I really don't want to risk all of that right now.  I've always appreciated how I was able to quickly resume an aggressive running & fitness routine as Gleevec started working its magic and my bone marrow recovered - it just felt so good to run fast and comfortably again and I don't think I want to risk that part of my well-being with potential side effects.

If I remember the data correctly, the chances of resistance/mutation go down to < 1.0% when one is at MMR at the 2 year point.  Is that right?  And isn't there at least a chance that the CML burden could slowly drop further on 400mg ... and perhaps I could reach CMR over the next several years without increasing dosage or changing TKIs?

This is such a helpful thread as I weigh my options on this next year of my journey - I am very grateful for everyone who has been taking the time to chime in - thank you.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#13 CallMeLucky

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Posted 18 April 2013 - 09:38 AM

Yes it is very possible that you will continue to drop and get to CMR.  It is also possible that you could stay at MMR.  To hear you speak I think I would trade CMR if I was stable MMR with no side effects.  I can't exercise even close to what I was doing before, although now on Sprycel I am working at it and hope to get back to a good level of fitness even if not where I was before.  If MMR is stable then chances of anything going wrong continue to go down, occasionally someone will develop resistance late in the game but no one knows why and there isn't anything you can necessarily do to avoid it.  Should that ever happen, then you would switch to a different drug and likely regain control.  So your plan for now is sound....


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#14 pamsouth

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Posted 18 April 2013 - 02:41 PM

Hi Dan,

Regarding Resistance/Mutation,  I really don't know about that.  I have my own view, which probably most people do not share/agree.  I think there are a lot of theories, not facts, and not everyone fits into one mold.  The drug are rushed thru so I feel like a guinea pig.  Although there may be a need I do not try or care to jump around or be on a high dose to reach MMR, I prefer to be stable and have a better quality of life and less drugs.  I think the Big Pharma plays down the side effects and the tocity.  I believe even if I were to have a deep response my body would still produce a bad cell.  So it is what it is no cure, just drugs, that keep me alive but I get to decide at what cost, or trade off at least to some degree.  It is sad that we do not have more say over our treatment and are made to feel like we have to take a standard dose or at least until we suffer enough.  Some things we may recover from and some, I don't know?   There are young, middle age, elderly, with different medical problems, besides CML.  One CML cell is one too many,  so as far as a higher risk, well yes, but at what expense of the drug to get to MMR, they are still toxic and each has their own demons.  When the doctor say higher risk, I say and what is the trade off and it is all a risk, experiments and clinical trials.  For those that have no choice or are in acute stage or multiple cancer they have a different story to tell.  Don't get me wrong with out them we would die.  As far as mutation, that still can show up no matter what level you are on.  So I'm am little leary to jump around on the different TKI's.  Am looking at a mirror of myself, a 65 year old woman with a 71 year old husband, who is working part time, but suffers from memory loss.  3 adult children and 6 grandchildren.  Taking care of my dying mom for 3 years and care taker of another family member who was in ICU 30 day an acute hospital and rehab, for a total of 88 days.  So I have learned a little bit about the medical profession, dealing with insurance & billing, and cancer...

I joined Jenny Craig weight loss in December and have lost 30 lbs or so.  I reached my goal, so they took my picture today, you know before and after.  Yesterday my husband told me how much he appreciated me and how beautiful I looked and much he loved me.  I haven't heard that for many years.  That's alone was worth my quality of life!!!!  I was just recently told by my cardio doc to stop taking my diuretic and lorazapam.  The only pills I now take are Gleevec and Fish Oil for my cholesterol.   We are leaving for Florida in May for 5 weeks.  I have diligently worked out from a crawl  to a run, to dancing, Zumba, stretches, yoga, weights, my elliptical, to eating healthy.  It is wonderful to feel this good.  That at 65 years old there is a quality of life for me at   CCYR for 8 year +.   I intend to stay the course, unless something drastic would go wrong. 

It is so... good to feel good and look good.  To have clarity of mind and balance, no GERD, itching, fluid, heart or lung problems brain fog......  Done been down that road!! 

My kidneys are a little low, but hope that will fix itself since I no longer take a diuretic.

We are not just a physical body, we are Spiritual, body, mind.  All three go together.  Staying the course at CCYR!!

Blessing, PamSouth


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#15 TeddyB

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Posted 18 April 2013 - 02:42 PM

Dan, there is definately a good chance the CML burden will drop on 400mg G as the years go by: http://community.lls.org/thread/11781



#16 LivingWellWithCML

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Posted 19 April 2013 - 01:22 PM

Yes, this is helpful; thanks @TeddyB.  I had forgotten about this great compilation of stats from @Trey ... definitely puts things into perspective.

I just wrapped up my 2 year appointment at Emory this morning and it was pretty uneventful as expected (and hoped).  They were running over an hour behind schedule because there were some pretty sick patients there today, so it's quite the reminder of how fortunate many of us are to have our health with these amazing TKIs doing the work.

I only saw Doc Emory's PA today (ugh), but she was confident that 400mg needed to be my course for now, because they are very happy with my response.  I still feel it would be nice to be presented options, so I'm going to settle down and mull it over during the summer before considering any change.  For now, it's another 6 months on 400mg before my test PCR in October.  Hopefully the Vitamin C supplement with the dose will further promote drug uptake and help me attain a deeper response.

And Emory apparently has a decent number of patients on ponatinib right now, and although they are seeing side effects, I was told that it's not considered this nasty toxic option as reported by the financial analysts' survey recently.  I believe they are also running a trial comparing imatinib to ponatinib as first line therapy (didn't get the details), but I thought that was interesting.

On a related note re: insurance, I'm part of a small group plan with BCBS, and they changed their drug benefits for the worse this year.  For the first two years of treatment, I was paying $60 for a 90 day supply of 400mg tablets (amazing benefit, actually!), but starting in 2013, I now am getting nailed with $200 for a 30 day supply (no 90 day option).  In short, all of the TKIs fall in their highest "tier" of medications, so I either pay 20% of the cost of the drug up to a $200 cap.  I imagine that's BCBS trying to recoup a small part of their loss on our small group policy.  So on the bright side, at least the cap is nowhere close to the retail price.  But what was a minor annoyance each month has now become a small car payment ..... ouch.   I do hope that a generic option will eventually be able to be offered in the USA.

Thanks again for all of the great input as I worked through this important 2 year milestone.  And @pamsouth - congratulations on how well you're doing.  Your journey and your outlook is very inspiring!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#17 Susan61

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Posted 19 April 2013 - 02:29 PM

Hi Pam:  I like your rationalization of how it all works.  You are so right, as each individual has to do what they feel is right.  I am on the 400mg of Gleevec now for a long time, and although I have been at PCRU for almost 11 years I still have to wonder about everything else that is going on with me.  I have GERD, and have to take Nexium daily.  I was told I have chronic kidney disease which is probably from the Gleevec.  It is stable for many years, but it still concerns me. All the other side effects have changed my quality of life also.

     I have said before that I know people who have gotten to Ccyr, and never got beyond that.  They have lived for 16 years plus with CML.  Its true we do not know what is unseen in our blood, even at PCRU which does not mean we are cured like some people think.  All it means is that our chances of Progression of the Disease are less.

   We know all the good that these TKI drugs have done for us, but who knows what we will find down the road as to what was not good which is why a lot of our people in the group want to stop taking the drug all together.

   DAN:

     You have to go with your gut feeling for awhile, and if you feel you want to stay on the 400mg of Gleevec and you are stable with your results then do it.  I am also wondering where all this insurance increase is going to put a lot of us.  I was paying $80.00 for a 90 day supply of my Gleevec, and now its up to $112.00 which is stil better than what others are paying.  My problem has been that with all my other drugs along with my  husbands drugs we are struggling along with all our other expenses.  I am curious to see what my PCR test will cost in July.  I know my lab costs have all gone up too.  I did not choose to pick up my Medicare when I turned 65, as my coverage with my husbands insurance has been durable.  Plus, I never did understand the Donut Hole where you pay so much more for a certain period of time.  I wish you well on your decision, and I think you already know what your going to do.

Susan



#18 pamsouth

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Posted 19 April 2013 - 02:57 PM

Dan,  Gleevec was suppose to become Generic this year, but I believe they got an 18 month extension.  You can google it.   I believe it is Generic in Asia or other countries. 

Sorry about your increase in the co-pay cost for you TKI.  I am one of the lucky ones, knock on wood.  I became 65 years old Jan 1st and went on Medicare, however our Chrysler UAW Retiree Drug Insurance picks up the deductible and donut hole for my Gleevec.  I was diagnosed in 2005 so grandfather in, not really sure if that will always be true, if Grandfathered in will mean anything for one day to the next, because they will always tell you has to pre approved once a year and is always subject to change.  When my husband was working before retiree, we paid very little for healthcare, next to nothing.  Then after retirement, things went up every year.  Now we pay about $7,000.00 a year but it will probably continue to go up each and every year and least that is the way it has been so far.  Still I'm grateful that so far this year I have only paid $22.00 dollar a month for Gleevec 400mg 30 pills.

Best wishes, hope you get to have my say in your dosage!!

PamSouth


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#19 pamsouth

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Posted 19 April 2013 - 03:30 PM

Hi Susan. 

I learned a lot from this site;  people personal experience and from the charts and web sites.  Still a lot of things are a mystery to me, probably for the scientist too.   For some reason when I was looking at a chart of the Stem Cell ( from Trey or Lucky, don't remember) and down to the final or last Blood level.  Well it really stuck with me, as much as could understand.  Because when diagnosed I never had a lot of white cells,  but I had 2 million platelets.  I just couldn't get it thru my head why so many platelets and I had asked so many specialist, never got a straight answer.  Suppose it would take to long for them to explain and they figure you won't understand anyhow.  But the charts, it starts with a faulty stem cell at or near the top of the chain, so it is in everything, that is why my red cells were abnormal or mishapen and platelets so high, they are not nucleus, but at one point and time, they were formed by that abnormal stem cell at the top of the chain.  Therefore I came to the conclusion, that is why the deeper response you get from the TKI is why the lower cells, on the CBC, not just white cells but alll of them, the blood was all  made from an abnormal stem cell at the top.  Therefore the more powerful the drug the deeper response, the lower counts, that most doc's treat with pills, infusion, transfusion or whatever.  So then my next thought I what point do I say enough is enough and what is the trade off and what is the long term outcome?  Then you consider your age and other health issue and money and time and appointments and quality of life, and the big Stree level that doctors say don't put to much on your plate, yea right.  It's not like one size dress fits all.  So everyone must decide for themselves, and lots of time it is just thru time and trial, and error.  I really don't want to be jumping around on TKI's but there is a big push from the drug salesman to the oncology, & I think they down play the toxicity, etc...

I went on diuretics back in 1997 for a added blood pressure pill.  I was told by two cardio and docs and another primary doc they are hard on your kidneys.  Then I went on Gleevec in 2005.  My Kidney are a little low sometime GFR 60, 58, 52, so I really don't know if it was a slow burn from the diuretics or the Gleevec or both.  I do think the Gleevec had something to do with my Gall bladder, the surgeon that took it out, said it looked good, but the test showed it didn't work where the tubes opens and close to transfer the bile.  So I don't know and you know what, I bet they don't either.   But if I were to change TKI how do I know what demon or toxicity I will be trading Gleevec for, If not one thing it will be another, and at what dose.  Don't get me wrong I am so... very thankful for the TKI but in the winter of my life (golden years), I want to go to the beach, I want to feel as good as I can.  So even if I shorten my life, for me, I will be grateful that I am feeling good as I can.  I do have a small gas tank.  Like last week I worked out a lot, and I am chilling out today, tired, but a good tired.  Hubby off to his part time job and I am going to see if I can find a good netflex movie, and let my body recover from the heavy workout I did last week.  Had my pic taken at Jenny Craig last week, down 30lbs, but need to lose more.  Still I dropped or discontinued 3 different pills.  Thank You Lord.  Afraid if I change drugs I will be back on more pills.  So that where I am with all this, but you never know, things change, and I could be singing a different tune tomorrow.  Who knows what is brewing.  I should have learned that by now.  One time back in the early 2002 or something like that, I went to have my heart checked out with a lot of test as heart problems run in my family.  My brother died last year at 61 years, of congestive heat failure, his first heart attack at age 39 years and 3 defibs.  Anyhow I told the Cardio doc I was the healthiest one of 5 siblings, His reply "that you know of."  Little did I know I would be diagnosed in 2005 with CML.  When I flew to MDAnderson, the oncologist told me I probably had this brewing for several years,  So one never knows.

Thanks for listening.   Sending you warm thoughts and blessings.  May God reward you for being so faithful on this site.   You have a wonderful way of expressing yourself to each individual situations.  I should learn a lot from you, but it seems I am destined to challenge everything, all though that gets less and less with age, stress level is not as good as when I was young.   

PamSouth


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#20 Susan61

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Posted 19 April 2013 - 04:44 PM

Hi Pam:  You sound so happy with it all, and your qualityof life.  My GFR is running like yours also, and have been lower at times.  Glad your doing so well with Jenny Craig.  I have always done well with Weight Watchers, and need to do something again.  I am also up there in age compared to many others, and would just like to maintain the level I am at.

I feel like you do regarding the Gleevec.  It has gotten me through so much, especiallly being I did not have it when diagnosed as you know.  I feel I have come a long way with all of this, and to take a chance on another TKI is not for me right now.  I also have constant congestion in my chest due to COPD and Allergies, therefore, Sprycel would surely not be for me.

    You explain things very well, and understand most of it better than I do.  I can only say what I know, or what I have experienced first hand to share with others.  I am glad that I found this website to be able to share with others, especially our newbies who are so afaid of what the future will bring.  I think what you have said, and things I have commented on has surely helped in some way.

   My Faith gets me through each day.  I have had amazing things happen in my life with God.

  God Bless You and Keep Enjoying LIfe.

Susan






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