I have posted my concerns before but to make a long story short, it has been 18 months 53%, 41%, 1.69%, 5.53%, 1.1%, 0.2% and now still at 0.2% PCR results. My husband says be thankful I am holding steady and not going up. I get that, but when will I be MMR or CMR? I am 43 years old and female and I just want to be around for grandchildren. Stressed and frustrated. Any suggestions. (I was on 400mg of Gleevec until I went from the 1.69% up to 5.53% then I switched to 100mg of Sprycel)
PCR results
Started by
CML2012
, Jun 11 2014 05:21 PM
5 replies to this topic
#1
CML2012
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Posted 11 June 2014 - 05:21 PM
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#2
Melanie
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Posted 12 June 2014 - 01:15 PM
So sorry for your frustration and totally understand your desire to be as disease free as possible. Actually you are doing quite well with a CCyR, which is the milestone that is most important and allows you to breath much easier. Deeper response from there takes longer for some, with some never reaching any deeper response but also never having any signs of disease progression. Hopefully you can have some comfort and relief in what you have achieved and know that although you want to be at CMR as quickly as possible, some of us are just slow responders and we have to become best friends with patience. Your history shows steady improvement and you may just be hitting a plateau for a bit before tossing another log away. You're very stable.
If it helps at all knowing you're not alone, I'm past 3 yrs dx and close to a CCyR. Patience and I have a love/hate relationship, but as time passes, I've become less stressed and more "patient" as long as my numbers remain stable.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
#3
Trey
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Posted 12 June 2014 - 02:43 PM
You are roughly on schedule and are just in that response plateau that occurs at about 12 - 24 months for many patients. And the need to switch drugs as in your case will usually extend the MMR timeline a bit since some time was "lost" as the Gleevec was not as effective as it should have been. That may seem rather average to you, but most people are average and most people do well over the long term. The plateau occurs because the drugs are now trying to kill off the higher level leukemic cells, and they are harder to kill. Most likely you will see MMR within the next 6 months or so. You have a very high probability of long term success.
#4
CML2012
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Posted 12 June 2014 - 05:45 PM
Thank you for your encouragement. Anyone who knows me personally will tell you patience and I do not know each other. Maybe God is trying to introduce us to each other. I am head strong and want what I want so I am definitely not only in a plateau but in all new territory.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#5
CML2012
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Posted 12 June 2014 - 05:52 PM
Trey, as I received my news yesterday and began my post, I told my husband "I hope Trey responds". Either you have been fighting this a while and done your homework as you have went along or you are a doctor hanging out on the discussion board. I am a very busy person. I teach high school, have two teenage children, and take care of our home. I wish I felt like I had the time to research this disease as well as get a second, third, etc opinion. Since I am short on free time this board has been great. You guys do have the answers. Like I said in my other reply, I am too busy to be sick and I do not have the patience for this. There is too much in life that I need to do and want to do so I just want to be well and skip all the other junk. I greatly appreciate you dedication to this board!!!!
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#6
Marnie
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Posted 12 June 2014 - 10:31 PM
I was slow on Gleevec, as well. When I switched to 100 mg Sprycel, my numbers dropped immediately. I hope that you have the same positive results. Do be aware of your lung function, as Sprycel can cause pleural effusion.
Good luck and hang in there. Slow and steady wins the race (at least for some of us).
Marnie
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