Jump to content


Photo

3, 6, 9 & 12 month results on Gleevec - please help :(


  • Please log in to reply
48 replies to this topic

#1 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 06 September 2011 - 10:07 PM

Hi all, just thought I'd share my 3 month (actually 10 weeks) results (Sept 5th, 2011).

I've dropped from bcr-abl 38% to 12% on the international scale.

I'm pretty crushed. I don't know why but I had hoped that it would be better than that. Was I hoping for too much?


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 valiantchong

valiantchong

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 September 2011 - 10:31 PM

I think you are doing ok, your rate is even better than mine. I think you will achieve CMR in less than 10 months.



#3 HPL

HPL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 September 2011 - 10:42 PM

I think the importance is that you are moving in the right direction, with a substantial decrease. I remember Dr. Druker told me that the 3 month is a good indicator of direction of how the drug is working. All in all, I would be pleased that the movement is happening and it's in the right direction. 

Hans



#4 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 September 2011 - 11:10 PM

Hi Pin,

Remember we are on Gleevec, so it is a bit slower for most of us compared to the other drugs. Have you reached CHR yet?



#5 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 06 September 2011 - 11:58 PM

Hi Pin,

You ticked the biggest box - you have had a response. Gerry is right about us being on the slower glivec train. You also did the test early - 2 out of 12 is quite a lot early. If you'd waited that extra 2 weeks you'd probably be very close to 3.8 which is the 1 log reduction they look for at 3 months.

It feels like the most important test of our lives and I guess everybody wants to be top of the class, but long term if you get a response that is what is important.

What does your doc say?


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


#6 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 07 September 2011 - 12:41 AM

Thanks guys,

I guess I was just hoping for a really good response based on my haematological response. The PCR is the real story though. My first one was on BM and the second PB, so whilst I know the correlation is high between these two, it isn't perfect.

And it's not a bad story at all, don't get me wrong - I just hoped for a great story

Thanks VC, I hope so - but I am now not going to expect anything so I don't get disappointed with objectively good results.

Thanks Hans, I know it's in the right direction, so that is the important thing.

Hi Gerry - I got a CHR in a week and a half, I think this has influenced my hoping! Also, you are right - a lot of the results I am comparing myself to are from the second gen TKIs.

Hey Josie, that's true - my haemotologist was reluctant to give me a PCR test at 3 months (as I have said before) probably partly because I would get disappointed! She said this is a good response - so I should probably listen.

edit: just as a side note, I'm on 400mg of Gleevec per day.


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


#7 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 07 September 2011 - 01:23 AM

Pin,

In a year's time you'll (hopefully) be relaxed about most things - you're still in the "spinning around" stage. If everything goes well, you just wind up being antsy around PCR time.



#8 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 14 December 2011 - 06:34 PM

Hi everyone, I just thought I'd share the results from my latest PCR test which was still done a couple of weeks early.

After the disappointment of my last test I was shocked (and then gradually elated) that my latest test showed a decrease to 0.14% IS.

baseline - 38% (marrow)

3 month - 12% (pb)

6 month - 0.14% (pb)

Makes me wonder how much of a difference there might have been between my blood and marrow for that first test...although, it's probably not worth thinking about!

Oh, and Gerry - you were exactly right about being antsy around PCR time, I've been doing pretty well for the last couple of months up until a few days before the test - boy was I stressed!


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


#9 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 14 December 2011 - 08:56 PM

Hey Pin,

That is a great result, very close to MMR...you can really get into the relaxing thing now.

I don't know about the marrow V blood thing, but heck that is all ancient history now.

How long did you have to wait for the PCR to come though?

I did my 9 month one a month ago today and got the result via email this morning. My tests are done at Peter Mac in Melbourne. My hematologist tried to get the results off them at my appointment 2 weeks after the test, they said they would review them that day and so I expected a call that afternoon or the next day. A week passed...then another week...I had to give up being stressed..and finally an email saying I've gone from -3.8 log to -4 log which is good. In the scheme of trying to stop treatment for a pregnancy (I'm 38 now) I'd like it to move faster. She doesn't want me to move to 800mg (or I'd probably like to try a 2nd generation TKI) but I'm going to ring and ask again.

Anyway it's good news for both of us!!!


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


#10 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 15 December 2011 - 03:23 AM

Hi Pin,

Well done, we do travel a bit slower on Gleevec but it does work for us.

It is hard for me to compare my results to yours as whenever I had a BMB through S&N they didn't seem to be able to get a result from it other than to say it was Positive.

So I was positive on 13/07/10 (BMB);

IS - 4.27% on 09/08/10 (blood);

positive for 29/11/10 (BMB);

IS - less than 0.02% (blood) - you won't know where you sit once you're under the 0.02% here, Australia doesn't test for any lower;

negative 12/10/11 (blood).

Don't worry about the difference between blood and marrow as long as it is heading down that is all that matters.

I now find once I've had the blood taken I don't worry as much, but still stress a little bit a week or two before I go to S&N.



#11 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 15 December 2011 - 03:30 AM

Hi Josie,

Push your doctor to move to Tasigna you deserve the chance to have your baby/ies - my Hematologist up here is very keen on it and if you're coping with 600mg of Glivec then the Tasigna will be a walk in the park for you and get you to where you need to be faster.

My doc would move me now if I gave him the nod, but I have a plan to do a dosage reduction of Glivec if I can continue with my negatives for two years and leave the Tasigna as a back up plan if I ever need it.



#12 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 15 December 2011 - 08:28 PM

Thanks Josie, wow that's a really good result It's annoying that it has seemingly slowed down though, hopefully your next test will be undetectable - does it need to be about 5 log for that to happen? My first two tests have come back two days after I get blood taken. I can't believe yours take a month, that's such a long time to be waiting I don't really understand why it would take that long to get them back to you, we all know that the test has to be done within about 24-48 hours at the very latest, so what are they doing with the rest of the month?

Thanks Gerry - I'm still trying to work out if it will be a good thing or a bad thing to not know about the fluctuations under the 0.02 level! If Josie knows that she is down to 4 log though, wouldn't they know more than two decimal places?


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


#13 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 16 December 2011 - 01:12 AM

Hey Gerry do you mean that they don't go below IS 0.02 (-3.7 log) or IS 0.002 (-4.7 log). Maybe it depends on the lab. My last one from peter mac (melbourne) was 0.009 which is just under 4 log,  then it says on the report that the sensitivity is 4 log so I'm guessing that means that the result is 0.009 +/- 0.01, not that it really matters. I do remember my doc saying that the lab in Adelaide is more sensitive than the one in Melbourne.

Well I found out why the PCR took a month...doc kept it warm for over two weeks...grrrrrrr. But  when she (eventually) emailed me the result and I asked to talk to her I did get a good phone consultation so all it not lost.

I'm going to 800 G. We talked about Tasigna again and she wanted to see how I go on 800 first both in terms of side effects and response (re test PCR mid Jan). As I am responding really very well to G, it is clearly hitting targets and she feels that we shouldn't assume that I will actually get a better response from T. But if the 6 weeks of 800 doesn't get me below the line she feels I can switch to T based on side effects. In the mean time she is also going to discuss my case with another CML doc in a few weeks. I know a few months back she discussed me with Timothy Hughes and he wanted to keep me on G then so I'm happy about her sourcing  expert advise.

In the mean time oh crap...I get to swallow 400 2x daily. I have done 600 without dose splitting to get the good morning time. Bummer I was just starting to feel human.


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


#14 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 16 December 2011 - 04:40 AM

Hi Pin and Josie,

It obviously depends on what lab they use - both my Hematologists used Sullivan Nicolaides who send the blood off to the Mater Hospital up here. On the previous PCR test they quoted "BCR-ABL detected but not accurately quantifiable. The level is less than 0.02%.

When I checked with my current Hematologist, he said that here in Aus they didn't feel the need to go any lower. And he was probably right, as the figures seems to bounce around a bit when they get that low and can be a bit upsetting for people. But that must only apply to Brisbane.

So I guess it depends where your test results come from Pin as to whether you get to track your results at the lower level.

When I've looked over the paperwork some of the tests are actually completed on the same day, others take 19 days to get done (PCR is one of these). I follow it up through my GP after about three weeks, she gets a copy for me, ahead of me seeing the Specialist, who I generally see the following week. It was kind of nice last time as she couldn't keep the smile off her face when she read the word negative (hopefully it sticks).

Pin,

When you get to undetectable - it just reads negative, so you don't need to worry about log reductions.

Josie,

Will definitely keep my fingers crossed for you with the 800mg and at least there is a plan in place to get you where you need to be. By the way I've noticed the fluid has reduced a bit since we've had a bit of cool weather, not looking forward to when the heat starts again. LOL.



#15 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 27 March 2012 - 10:58 PM

Hey everyone,

I got my 9 month PCR results back today and I'm pretty happy with where they are right now.

I'm now at IS 0.004% -  Which is almost a 4 log reduction from my personal baseline My liver results were up, but I'm hoping this is just because I played 3 soccer games the day before (that can happen to livers, right?).

Thanks everyone for your daily support I don't quite know where I'd be without all of you!

Gerry - interestingly, they didn't provide the exact number on my report, but I asked my doctor to call for the specific result and they gave it to me. Which is interesting, perhaps they are measuring, but they don't want us to stress about it?

Cheers everyone,

Pin.


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


#16 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 27 March 2012 - 11:22 PM

Congratulations Pin. I think they just decided on a cut off point and it possibly does cut down on the stress if your results bounce around a little. I'm due to get my blood drawn in a month's time, hopefully will keep my PCRU.



#17 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 28 March 2012 - 12:14 AM

Very Nice results!!! The Melbourne lab (Peter Mac) reports down to 4.5 log reduction IS which is about 0.003 and I don't think any of the other labs go lower, so basically your result is very very close to PCRU. What's 0.001 between friends!! If you'd been 5 mins earlier to give blood you may have got a PCRU result.

I'm coming to the conclusion that liver numbers bounce just like a soccer ball, as long as they are only mildly high.

Enjoy! and your soccer too.


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


#18 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 28 March 2012 - 12:57 AM

Thanks guys Good luck with your next test Gerry, I hope you keep PCRU! And Josie, I hope you are feeling really good right now med-free

My LDH numbers were 222, 209, 220, and then 420 (ref range: 125-240 U/L) and my ALT was 12, 13, 12, and then 47 (ref range: <55). Bilrubin is also up although within range (11, 10, 11, then 16, ref range: 2-20). Also, my white cell count was normal for the first time since reaching CHR (6.0) and my platelets also hit the normal range (159).

I'm pretty sure it was just the exercise, unless the LDH number is really bad? Is it ok for it to go up by that much?


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


#19 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 28 March 2012 - 01:57 AM

I don't remember seeing LDH on my results just ALT and AST..so I'm not much help there. Anything less than 100 for ALT and AST and my doc just yawns

Drug free for one week and it is  awesome!!! Another way of putting it is that 800 G was just horrible. With the root canal from hell this week I've been alternating between curled up in pain and bouncing around like a 10 year old.... poor hubby   The dental thing is gross but compared to 800 just a blip.

And Gerry good, fingers and toes for some good news from your PRC too.


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


#20 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 28 March 2012 - 03:40 AM

Pin,

Congrats on the great number!  You and I have the exact same PCR test result, got mine last week, also 0.004%.  How's that for a coinkydink?

Traci






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users