Javascript Disabled Detected

You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.

Happy repoting

Started by minu , Apr 15 2016 03:37 PM

Please log in to reply

7 replies to this topic

#1 minu

Advanced Member

Members
32 posts

Posted 15 April 2016 - 03:37 PM

I was dx in Sept 2012. In late that month started 400 mg glivec. After a month developed very high fever and extreme rash. Was hospitalized and had to be in mechanical ventilation for 7 days due to drug induced intestial pneumonia. I was reintroduced to glivec in March 2013 and had severe reaction after just first dose. Had to wait till May for several other complications when I started 600 mg tasigna. There is no pcr test available in Bangladesh where I live, so my pcr tests are done in India for anywhere between 4-6 months. Here is my history
9/13 3.14%
1/14 .03% (lab 1) .O8% (lab 2)
7/14 .03% (lab 1)
3/15 .08% (lab 2)
8/15 undetected in lab 1
12/15 .002 (lab1)
This is when I decided to reduce my dose to 400 mg of tasigna due to my side effects of high blood sugar and cramps. Took some courgae from Scuba and consultation from a second onc. Today I got my pcr report from lab 2 and it came out to be .002%.
Very happy. Just wanted to share.

Back to top

#2 mscl

Advanced Member

Members
68 posts

LocationSalina KS

Posted 15 April 2016 - 04:05 PM

😀�'�

Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

Back to top

#3 tiredblood

Advanced Member

Members
474 posts

Posted 15 April 2016 - 08:30 PM

That is wonderful news. Congratulations.

Back to top

#4 minu

Advanced Member

Members
32 posts

Posted 15 April 2016 - 09:10 PM

Thanks. It also means significant cost reduction for my copayment. I am planning the next test in 2 months.

Back to top

#5 Melanie

Advanced Member

Members
219 posts

LocationArizona

Posted 16 April 2016 - 12:02 AM

Congratulations! Doing something similar with Bosulif. Hope your PCR stays the same or continues to undetected. Best to you�'�

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)

Back to top

#6 Buzzm1

Advanced Member

Members
972 posts

LocationSilicon Valley

Posted 16 April 2016 - 12:34 AM

minu,

Congratulations on your success.

here, the Tasigna 150mg and 200mg are priced the same, making the 200mg the best value for the money spent.

the pills can also be split ... Pricing/Splitting Pills

For the benefit of yourself and others please add your CML history into your Signature

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.

Cumulative Gleevec dosage estimated at 830 grams

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt