Advanced Member
Posted 23 November 2016 - 07:35 PM
Hi Pin,
Good luck with the results, you will definitely notice a lessening of side effects, though I did notice I started to get a bit of joint pain towards the end of my year on 300mg, hadn't had it before.
But it was nice to be able to stretch without worrying too much about hurting yourself. :-)
Advanced Member
Posted 24 November 2016 - 04:20 AM
This abstract to be presented at ASH in a few weeks is relevant:
https://ash.confex.c...Paper93234.html
Their conclusion is:
"In CML patients with stable MR3 or better, decreasing TKI treatment to half the standard dose appears safe, and is associated with improvement in TKI related side effects, implying that many patients with stable responses are being overtreated. Studies of more ambitious de-escalation are warranted."
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
Advanced Member
Posted 24 November 2016 - 04:33 PM
This is terrific, because it will be persuasive to those oncs who are nervous about reducing dosage. However, did I miss something? Wasn't the de-escalation year supposed to be followed by a cessation year? Were the results of that reported? Maybe I need to go back and read it more carefully.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 24 November 2016 - 06:50 PM
It looks like MD Anderson has started a trial this year to see how effective half dose dasatinib (50mg/day) is for newly diagnosed CML patients.
https://clinicaltria...how/NCT02689440
"The goal of this clinical research study is to learn if giving half of the recommended FDA approved dose of dasatinib can help to control CML as effectively as the full dose of dasatinib."
CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)
BCR-ABL (IS)
46.77 April 2016
3.568 July 2016
0.076 Oct 2016
0.016 Feb 2017
0.0079 April 2017
0.014 July 2017
0.019 Sept 2017
0.011 Nov 2017
0.019 Jan 2018
Sprycel
100mg April 29 - September 22
75mg September 23 - October 28
50mg October 29 2016 to present
Advanced Member
Posted 25 November 2016 - 06:44 AM
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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