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#1 Pin

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Posted 14 May 2013 - 01:12 AM

Hey all,  I've just gotten back my latest PCR test and it is not great news again - I've gone up again to 0.041%.

I know this is still in the "zone" and could go lower again due to testing error and stuff, but I can't help but feel sad and discouraged at the general incremental trend of things over the past 7 months - if it was stable, then ok. I've really tried over the past month to cut out antacids, eat lots of vitamin C, take my medication on time etc. But nothing is changing it for the better (yet? please?). The registrar even asked me "have you been taking your medication?", I said "Yes" and he said, "No, I mean have you been taking it every day?". I nearly laughed out loud (in horror) - If only he knew me.

I sense a drug increase or change in my near future. I still really can't understand how this has happened, if it's just an increased dosage required then how come it was fine in the beginning? It seems to go against everything I've heard about leukemic load vs drug quantity. Also, a mutation doesn't seem likely either as it isn't (touch wood) increasing dramatically. Am I just dealing with test error here? Does it look like resistance? I don't really understand the difference between resistance and mutations.

I have been problmem-solving this to the nth degree, but I just can't seem to work it out.

Has anyone got any advice on how to deal? I just feel extremely discouraged and helpless.

TimeBCR-ABL
Baseline38
3 months12
6 months0.14
9 months0.004
12 months0.0039
15 months0.013
16 months0.032
17 months0.021
18 months0.01
19 months0.014
20 months0.016
21 months0.026
22 months0.041

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#2 jjg

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Posted 14 May 2013 - 02:55 AM

Hi Pin,

Bummmmmer. I totally get why you are feeling down. You've done all the things to improve your PCR, you should be going to the top of the class and instead you get SPLAT.

Your 9 and 12 month results seem weird compared to the rest and other than that you are bouncing around in a place you'd rather move straight through on your way to PCRU. It's still not a bad place, actually about where I was on my last test, but you want to try to get lower. If my tests say there for 7 months I'll be an unhappy camper too. I know that you want to stop treatment at some point and so there is a lot more motivation to move down faster. Before nilotinib and dastinib were easily available to us I ended up increasing from 600 to 800mg glivec with that very motivation. It was a real crap shoot, unless you're currently at zero side effects with 400mg you've got much better options. So I guess you'd already know that I would say ask to go 2nd generation.

My other instinctive reaction is that you are getting tested too much for your own piece of mind - seeing trends within data that are all within measurement error. 

I'm going to say what (I think) I know about resistance and mutation.  Resistance is a drug not working to some degree or not working at all. My understanding is that for us resistance comes from mutations occurring at various levels, ie the result of mutations. You can have minor mutations so that the drug still works but less well (think paper clip that is a little twisted but mostly gets the job done) or a major mutation so the drug is no onger working on those cells (paper clip that has been really twisted or partially unwound so that it is useless) and cells with that mutation gain a competitive advantage over those that are inhibited by the drug. I think that as we live longer with CML (particularly at levels above CCyR) mutations just occur but the  majority don't cause a problem with mechanics of the TKIs. I think (but really not sure) that progression is a particularly unstable mutation. In your case if you have any cells that are that are getting around the TKI they don't seem to be gaining much of a competitive advantage i.e. your PCR is not going up. You could also be having some trouble with drug concentration levels or absorption, sorry I don't know the mechanisms...

How does it work with your doctors, do you get to see a registrar between seeing the one doctor consistently? Do you think they'll be receptive to wanting to change something?


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#3 CallMeLucky

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Posted 14 May 2013 - 08:47 AM

I can understand why you feel the way you do.  The thing to keep in mind is that you are MMR, if we only reported in terms of status instead of actual numbers you would be perfectly fine with hearing from your doctor each test cycle "still MMR".  The second thing to keep in mind is that PCR fluctuates, I see the concern because it looks like it is slowly creeping up and I can't tell you that is not what is happening and it won't continue to go up, but for now, where you are is a very good place.  The mechanisms of resistance are not completely understood, people develop resistance to Gleevec without mutations and when they are doing everything right.  They have a good response and then at some point maybe a year or two into it and sometimes as much as 10 years into, the drug is just not as effective.  We tend to think of this as the CML evolving into a more dangerous disease, and maybe it is but it can also be the result of other things like changes in metabolism or who knows what.  The point is that resistance to Gleevec has been known for a long time and was the driving force behind developing additional drugs.  Thankfully those drugs are available.  It is very very likely that a switch to Tasigna or Sprycel would knock you off the detectable list.  You can keep doing what you're doing and for now it is fine.  If it were me, I would probably just switch, but there is a good argument for staying on Gleevec for now.


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%
 

 


#4 Tedsey

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Posted 14 May 2013 - 03:08 PM

"The registrar even asked me "have you been taking your medication?"  Forgive me, but what a dope!  How is that to scare someone good?  Gee, what never to say to a patient...  I don't see how this small jump in your numbers would mean you are skipping your med.  Don't rely on these people to have even a hint of what is really going on with this disease or how it is measured.  I had a goofy nurse the other day that had the mind frame everyone who has cancer feels sick (and was probably wondering if my long hair was a wig, LOL), and all doctors are men.  Whatever...

I am sorry you are feeling so down.  I can relate.  I am also still waiting for my PCR to come back...  Mine went up a bit too with my last one.  So, I understand how hard it can be even when the rise is not significant!  Forgive me if I forgot, but I think you are still taking imatinib.  If, per chance, your PCR significantly climbs, another drug will probably do the trick.

Wishing you peace,

Tedsey



#5 Susan61

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Posted 14 May 2013 - 04:24 PM

Hi:  I can feel for you with this problem, not because I have had a rise in my numbers.  I have been stable at PCRU for a long time, but I have posted before that there are people who live with CML for years being stable in holding their MMR status.  We are all so different in how we handle these drugs, and how we live with certain side effects.

      Try not to get too discouraged, as you might just need a increase to bounce you right into range for PCRU.

      Like Lucky said there are other choices now for you to try if one does not work.  I had nothing to offer me except Gleevec when I needed a TKI, and I just Thank God it worked for me at that time.

     I believe it will all work out for you too.

Hugs and Prayers

Susan



#6 LivingWellWithCML

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Posted 14 May 2013 - 08:31 PM

Sorry to hear you are down, but fortunately you are not alone in this journey.  I know you want to get this thing down lower for family planning, but go compare your numbers to mine and maybe that will help your spirits a little bit.  We re on the same dose and we both are doing everything we can to control it, yet my numbers aren't as good as yours.  But that said, I am healthy and in great shape, so I am counting my blessings and continuing with life as best as I can.  I keep telling myself, "I am MMR ... Celebrate it ...." and I do as much as I can. :). My wife has pushed me hard to focus on the great results, my great health and fitness, and prognosis ... So try to keep that in perspective in your life as much as you can.

I agree re: testing....PCR testing that often would drive me crazy, since I am a numbers person and want control.

Given how well you have done, I bet a TKI switch will drive you to PCRU quickly if that is where you need to be.  We are fortunate to have options. :)

Hang in there, Pin "............


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#7 Pin

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Posted 14 May 2013 - 09:14 PM

**

Hey jjg, yes - I know, maybe that's part of why I'm finding this hard to accept. It's just frustrating having little control over my response - it's something I've struggled with from the very beginning really. Yes, my 9 and 12 month results are weird. If even just one of them wasn't there I don't think I'd be as puzzled about what's happening, I don't think the doctors would have paid attention either, this seems to be why they were concerned and have me on 'watch'. Maybe I got "lucky" and got two inaccurate results in a row!

You are so right, the extra monitoring is probably what is doing my head in, looking at the results 3 months apart, and they don't look that bad - unfortunately for me, putting in all the extra data points makes it look worse. I get it, that I may be seeing trends that might not be there - I think this one just wigged me, because I truly expected it to be back down again, or so seemed to be the previous pattern. I try so hard to see meaning in things, and maybe it's just not there - there is so much more randomness to the universe than my mind wants to accept.

Thanks for your explanation of resistance and mutations. I hope this is not the case, but I guess I will have to wait and see. I know I have drug concentration level problems, but the mechanisms behind that are just as unclear...

With this extra monitoring, I usually just call up the hospital and they put me through to whichever doctor is on to retrieve my results. Yesterday I got a call after I wrote this post by my actual haemotolgist telling me not to worry just yet. I think I will likely end up changing to tasigna if this pattern continues, but I am very scared of change - even if it could be so much better, the unknown is what always gets me.

**

Lucky, thank you - I do manage to get there after a time of panicking! This panic time seems to be getting shorter each time, so maybe I am making progress there...I think I need to wait and see what I need to do in terms of drug switch. It is good to know that there are lots of people like you who have switched and gotten good results, and sometimes improved side effects. I hope your pain gets better the longer you are on sprycel. I have pretty horrible muscle cramps and bone pain on gleevec. Last night I was awake at 3:30am for an hour of excruciating intestinal pain. Sometimes these side effects can be very difficult indeed.

**

Thanks Tedsey - yes, that was a good one! That's partly what scared me actually - because his assessment was that I was losing response so I must be the cause of it somehow. I think maybe he only just read that paper on medication compliance and outcomes last week...I am on imatinib 400mg from the start. I hope your next result gives you some peace of mind - the mental battle is definitely a huge part of living with CML, that's for sure. I am so grateful to have this board full of people who understand and also have a lot of knowledge.

**

Thanks for the kind words Susan, you continue to be an inspiration for so many of us on this board. I hope it goes back down again - then at least I can have a month of feeling ok about it!

**

Hey Dan, nice to hear from you! I know I am definitely not alone, it does help a lot to know that. I think I just get so panicky when I see it going up that it reminds me of how I felt in the beginning - that it is completely out of my control and I hate that. Like Tyler Durden says in Fight Club - "you have to give up" - I have to give up trying to control something that is actually out of my control, I can take my medication, I can look after myself, but that's it. Your wife has some sound advice, I really need to listen to it too

**

Thanks so much for the help everyone. I'm sure if this was someone else's results I wouldn't even be worried for them - I just need to work harder at convincing myself that I shouldn't be any different to other people (i.e., I am not doomed!). I realise that the wheels fall off my wagon quite often, so thank you for responding and having patience with me


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#8 Susan61

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Posted 14 May 2013 - 10:07 PM

Hi:  You sound so much better after letting out all your emotions.  Thats what we all need to do every once in awhile.

I think all the responses you got really helped you to lift your spirits about the whole thing.

You know we are always here.  Have a good day tomorrow.

Susan



#9 Rissa

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Posted 15 May 2013 - 10:53 AM

Hi Pin,

Your results seem similar to mine.  It's hard not to get upset about increases no matter how small they are.

http://community.lls...e/162654#162654

Rissa



#10 Pin

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Posted 16 May 2013 - 06:54 PM

Thanks guys - I think I would be ok if it looked more random and less linear! Too many data points I think.

Rissa, maybe I should try curcumin too I'm glad your last test came down again that must have been reassuring.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#11 jjg

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Posted 17 May 2013 - 03:28 AM

Yes it is scary not being in control of something that has the potential to go very badly. The TKIs give us a feeling of being in control but in reality we can't control whether the TKIs work well on the CML or whether they make us feel horrible along the way. It's a bit like getting on one of those bus journeys in the Himalayas knowing that only most of the time the driver doesn't go over the edge of a cliff. All these kind of risky things my friends used to do and I could say no thanks to, but suddenly we can't say no thanks to having CML.


I have never really thought too much about the new drug having unknowns, as in unknowns for me personally. Certainly they do but nothing I can control. So I like to think more about what is actually known about the  drugs - comparing side effect profiles (noting % not just scariness), efficacy and whether it makes sense to hold back on going 2nd generation so that you have more drug options (I don't think so). I do a bit of a risk benefit analysis (nerd that I am ) and then at least I feel I'm in control of something - sadly just the analysis, neither the risk or the benefit.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#12 Susan61

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Posted 17 May 2013 - 05:06 PM

Hi Pin: 

     Hope your having a better day.  Be careful with Curcumin if you decide to use it.  Always check with your doctor, even though people use it all the time.  Its a blood thinner as well as all the other things its good for.

I always say that something could be good for one thing, but mess up something else.  Just some advice.

     I know it can effect the ability of your platelets to clot properly, or if anyone is on a blood thinner like Coumadin they should not use Curcumin.

    Most people think of it as a everyday spice.  Just wanted to share that.

Susan



#13 pammartin

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Posted 17 May 2013 - 08:32 PM

Pin,

I am sorry for not replying earlier, I finally had to download another browser to have the ability to post.  I can't say anything to make you feel better or change your test results, but I am listening and supporting you.

Take care

Pam



#14 Pin

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Posted 18 June 2013 - 06:13 AM

Hi all, well, somewhat surprisingly, I got some good news today - my 23 month test came back at <0.01% IS. They didn't give me the specific quantitative number (I have previously asked for these when they were reported as under .01), but this time I'm not planning on asking. I am relieved to say the very least - the past 6 months has felt like a rollercoaster, in particular the past month has been very difficult for me - I was absolutely convinced of the worst. Sometimes I feel very stupid for thinking like this, but it is difficult. Anyway, I have no idea what has changed, if indeed anything has - it all could still fall under testing error of course. But what I do know is that after being reassured that test results really do go both up and down, is that I am going to have a break - hopefully a long one, from blaming myself for things that are probably not under my control


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#15 CallMeLucky

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Posted 18 June 2013 - 10:03 AM

Very nice......


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%
 

 


#16 LivingWellWithCML

LivingWellWithCML

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Posted 18 June 2013 - 10:43 AM

Great news, Pin!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#17 mariebow

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Posted 18 June 2013 - 11:33 AM

Great



#18 Tedsey

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Posted 18 June 2013 - 12:08 PM

So very happy to hear the great news Pin!  And sorry I took so long to answer your post to me from a while ago.  Yes!  I scored PCRU.  Unbelievable!  Glad we are in the same boat.  Hope we stay there.  It almost feels like smooth sailing.  But the kook I am, I don't want to revel in it too much (afraid to bring attention to it, but I really should because I had a lot of bumps on the road in getting here and my blood counts are pretty far from normal still--but saying that might help others who post here).  Ironically, it doesn't feel much different than the other PCRs (except there is no lower to go).  Now I will stress out if the test starts to detect something no matter how small.  How can we not all go crazy over that????  Hopefully low PCRs will mean life for all of us and PCRU will just be what it is, but no better.  Bless all those who have made this happen.  Namely, Dr. Druker who started this whole thing, my onc who respects me and what I understand of this disease and treatment, and all my BIFs on this board with their kindness and knowledge.  Despite having to take a drug daily, it almost feels like a cure.  There are times now when I can actually sustain the feeling of being a normal person with a normal life who doesn't have constant impending doom hanging over my head.  So, in many ways, I feel blessed.

All the best to you, long life and good health!

Tedsey



#19 CallMeLucky

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Posted 18 June 2013 - 02:45 PM

Teds -  you really should share the PCRu status in a separate thread, a lot of people would be happy to hear it.  Amazing what a couple of years can do.  I know for a long time you thought you were on bad course.  It is very nice to hear you have gotten to place where you have some peace and are able to enjoy the life you have.


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%
 

 


#20 GerryL

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Posted 18 June 2013 - 06:15 PM

Hi Teds,

Great news - when I read your initial message I wasn't sure if that was what you were indicating since you'd slipped it in amongst a lot of other info and I didn't like to ask in case I'd misread it. Good pick up by Pin to ask you straight out. Fingers crossed the PCRUs continue.






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