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Got My Results Today


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#1 Susan61

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Posted 23 January 2013 - 07:11 PM

Hi:  I went for my 6 month check-up today, and I am PCRU again for the 10th year, and my platelet count came up a little bit as well as my kidney functions were better.  I discussed reducing my dose of Gleevec from 400mg, but the doctor will not budge on this issue.  She said every patient that she has let reduce their dose had to go back up to 400mg as they lost their PCRU status. She said until something better comes along with all the trials they are doing she wants me to just keep doing what I have been doing.

     I am just not feeling good with some other problems, so I did not argue with her.  I will just keep an eye on the blood work for now.

    I am going to make an appointment right now for a Endoscopy, as I am sure I have a Hiatal Hernia or a Ulcer??  Been so miserable with the stomach pain and pressure.

   Just Thanking God for another good Blood Test, and leaving it up to him.  I have lived with my side effects which have been less than a lot of others have had.  I know some will not agree with me, but I do not want to mess up a good thing either.

Susan



#2 teb

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Posted 23 January 2013 - 07:48 PM

Hi Susan,  im sorry you arent  feeling well. sometimes it feels like one thing after snotherI've been on gleevec 300mg for 18 months and have reached MMR. I was on 400 mg then brought down to 100 then slowly brought up to and  so far staying on 300 for now



#3 GerryL

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Posted 23 January 2013 - 08:09 PM

Hi Susan,

I guess my next question for her would have been - did those people get their PCRU status back again once they restarted the 400mg?

Anyways, it is your choice about how you want to proceed as we are each our own advocate for our health.

I hope they find out what is causing your stomach issues, and it turns out to be something that is easily managed as you've been through the wars a bit lately.

Take care

Gerry



#4 jjg

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Posted 23 January 2013 - 09:34 PM

Congrats on 10 years of PCRU! I hope the other nasties are letting you enjoy your 10 year mark.

The bad thing about PCRU is that you could be 0.001 or 0.0001 or  0 and you don't know. The good thing is that it is PCRU!!!

I'd bet my little left toe (that I'm really attached to) that you could stop treatment and be fine and I'd bet ten little left toes (oh crap I only have one... anyways) that you could go to 200 or low dose 2nd gen TKI and be really very fine. Fine as in PCRU or able to return to PCRU.

We all have our own risk profiles - some play the stock market and others (my grandmother) like to hide away money in glass jars in the garden (sure helped motivate us grandchildren to do gardening). I don't think I'd cope well with your doctors conservative approach.

As more of us reach long periods on TKIs I hope they start studies looking at the toll of long term side effects V general aging.


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


#5 alexamay09

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Posted 24 January 2013 - 10:52 AM

congratulations Susan. i hope you get the stomache issues resolved soon as i know only too well how miserable they are. PCRU is currently a dream for me, and i love seeing so many people doing so well



#6 CMLSurvivor

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Posted 24 January 2013 - 11:39 AM

Congratulations!!! PCRU for 10 years is great results. I would think that after 10 years they could reduce your dose. They reduced mine to 300 mg after 3 years of PCRU and after 2 years on the lower dose I have maintained PCRU. You need to have a major party once you are feeling up to it. It really is quite an accomplishment.



#7 CallMeLucky

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Posted 24 January 2013 - 01:07 PM

Congratulations, happy to hear it.

I had an interesting conversation with a CML doctor.  He was commenting on my PCRu status and said "the interesting thing about patients in your situation is that they did a trial where they stopped treatment for people who are undetectable and 60% relapsed.  What they don't emphasize much is that 40% did not relapse!"


He then went on to say that the ones who did relapse were able to get their status back by going back on treatment.  He said I had not been in treatment long enough to do this that you had to be undetectable for a minimum of two years to even consider it.

You have been PCRu for 10+ years.  Have you ever asked your doctor about stopping all together?  Some doctors don't want to lower dosage for fear of resistance.  But stopping all together may be a different conversation.

Of course maybe that is not what you want.  In the end it is your choice.

Hope you are feeling well again soon.


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 Ray99

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Posted 24 January 2013 - 06:22 PM

Susan, 

    Congratulation!!!  It is a big achievement, 10+ years of PCRU.



#9 Marnie

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Posted 24 January 2013 - 06:35 PM

Awesome results, Susan.  So happy to hear it.  Best of luck on your other issues.  I know you've not been feeling up to snuff lately.  I hope things turn around for you soon.

Best,

Marnie



#10 Susan61

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Posted 24 January 2013 - 08:06 PM

Hi:  I am sending my Thanks to Everyone.  I guess I just did not argue my point enough, due to just feeling so yucky with everything else going on.  I left just being glad to see I was PCRU again.  There has been a lot going on in my life, so I guess I should just Thank God at this point till I feel like pushing the issue more.

    I am making my appointment on Monday to get that darn Endoscopy over with.

    I just post my results mostly to encourage anyone struggling with their drugs, side effects, etc. to just keep going.  Some of us will get to see some dramatic breakthrough with the treatment of CML beyond TKI drugs.

Susan



#11 nathaliece

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Posted 24 January 2013 - 10:20 PM

Susan,

Congratulations!  You have provided so much hope and encouragement to so many of us.

I had a similar conversation with my oncologist earlier this month and received a similar response ... although I have been PCRU for 10 months rather than 10 years.

I hope your stomach issues are resolved very soon.  Keep sharing you good news.  I love to hear it!

Nat



#12 TeddyB

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Posted 25 January 2013 - 04:09 AM

Congratulation Susan



#13 Susan61

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Posted 25 January 2013 - 01:22 PM

Hi Nat:  Did you want to reduce your dose for any special reason, or just to be taking less of a strong medication?

Like I said I have been living with all the side effects, but I was concerned with my low numbers.  I was getting so frustrated with the whole thing, then all these other medical issues just got to me.  Could be why I am having all this stomach trouble too.  Stress can do so much to the body as well as the mind.  Glad you have been at PCRU for 10 months.  I have missed so much of what has been going on for the past few months well I was without a computer.

Susan



#14 teb

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Posted 25 January 2013 - 05:03 PM

Susan,can you explain to me what PCRU means?



#15 Calalily

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Posted 25 January 2013 - 05:24 PM

Congratulations! Great for a new nervous recruit like myself to see yourself others doing so well. I hope your doc or someone can help you with the other side effects. Hopefully after the endoscopy your doc might be able to give you something or sort out the tummy issues.

Best Wishes,

Calalily



#16 Susan61

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Posted 25 January 2013 - 10:21 PM

Hi:  I do not know when you were diagnosed, or what form of testing they are doing on you right now.  When I was first diagnosed, they only did BMB along with a FISH test.  The FISH test just shows so many cells, where as a PCR Blood Test can see many more cells.  They did not start doing a PCR test on me until I got to a Complete Cytogenetic Response where all my numbers in my blood test were back to normal.  Once I got to that point, I no longer had to have any BMB.  They started to strictly test me through this PCR Blood Test.  For 10 years now it has not shown any cancer cells.  PCRU means undetected.  At this point your at the top of where you will be, until they come up with some more advanced testing at some point.  I explained this real simple, because I am not good with all the technical terms. This is probably much easier for you to understand. When I was first diagnosed I had to get a BMB every 3 months because there were no TKI drugs like Gleevec, Tasigna, etc.  Gleevec was the first TKI drug available, and I was in the clinical trial for it when it came out.  None of the older treatments back in 1998 worked for me.

I hope I did not confuse you with my explanation.  There are others on this board who explain things better than I can.



#17 nathaliece

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Posted 26 January 2013 - 11:51 PM

Susan,

I wanted to reduce the dosage because of the side effects of Gleevec, primarily.  I have a great deal of bone pain, primarily in my hands.

Nat



#18 GerryL

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Posted 27 January 2013 - 09:00 PM

Hi Nat,

Not sure that a dosage reduction will help - I originally started out with little side effects on Gleevec but they gradually got worse as time passed. After a year of PCRU I asked my doc if I could drop to 300mg which he has allowed. Some things got better, but I now have joint pain in my hands. I have difficulty opening bottles and grasping small objects, even pulling small weeds out of the garden has become an issue. My doc wants me to switch to Tasigna as his patients that were suffering with joint pain on Gleevec, now don't have any issues. I'm debating whether to make the change in May.



#19 Pin

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Posted 03 February 2013 - 05:38 PM

Wonderful to hear your continued response, Susan.

Sounds like you have an old school doctor like me, I hope you can convince her eventually to try lower dosage for you.


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





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