Degenerative discs and cml
Posted 22 March 2017 - 11:55 PM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 23 March 2017 - 07:25 PM
AP HANDS : Mineralization is normal. There is no angulation deformity or soft tissue swelling of the digits. There is mild to modest asymmetric loss of IP joint space with hypertrophic change. MCP joints are normal. There is mild asymmetric loss of trapeziometacarpal joint space with mild to modest subchondral cystic and hypertrophic change of the trapezium more than proximal 2nd metacarpals and of the proximal carpals.
SHOULDER(S) : Mineralization is normal. There is no particular are periarticular calcification. There is modest asymmetric loss of acromioclavicular joint space with subchondral cystic and hypertrophic change of the distal clavicle and proximal acromion. The glenohumeral joints appear normal.
CERVICAL SPINE with OBLIQUE VIEWS: Mineralization is normal. There is straightening of the normal lordotic curve with a mild reversal of the mid cervical spine consistent with spasm. There is moderate loss of mid and or cervical disc space with modest vertebral hypertrophic change and facet arthropathy. Oblique views reveal moderate C5-6 and C6-C7 uncal vertebral hypertrophic changes with minimal asymmetric neuroforaminal encroachment.
LUMBAR SPINE : Mineralization is normal. There is a modest dextroscoliosis, loss of disc space especially at the lower lumbar spine and lumbosacral junction, moderate vertebral hypertrophic change and facet arthropathy at the lumbosacral junction. There is asymmetric sacroiliac joint space loss with hypertrophic change of joint margins. There is moderate osteitis pubis with loss of joint space and subchondral cystic, sclerotic and hypertrophic change of joint margins. Lateral views reveal minimal calcification of the abdominal aorta, moderate loss of L4-5 and L5-S1 disc space, moderate loss of lower thoracic to mid lumbar disc space with Schmorl node formation, mild vertebral hypertrophic change and moderate facet arthropathy at the lower lumbar spine and lumbosacral junction.
AP PELVIS : Mineralization is normal. There is a mild scoliosis, moderate loss of disc space, vertebral hypertrophic change and facet disease at the lumbosacral junction. There is sacroiliac osteoarthritis with loss of joint space and hypertrophic change with subchondral cysts of joint margins. There is minimal asymmetric loss of right hip joint space with acetabular hypertrophic change. There signs of osteitis pubis with loss of joint space and subchondral cystic, hypertrophic and sclerotic change of joint margins at the pubic symphysis.
Weight Bearing KNEE(S): Mineralization is normal. There is severe loss of right medial joint space with buttressing of the right medial tibial plateau, moderate loss of left medial joint space, mild to moderate loss of patellofemoral joint space and moderate asymmetric medial compartment more than lateral compartment more than patellofemoral joint hypertrophic change.
Posted 23 March 2017 - 08:23 PM
I have significant damage to C4 through T1 (foraminal narrowing) from a childhood injury, many decades ago, which effects the muscles in my upper torso (shoulders, back, arms, hands). I had an extensive laminectomy almost 30 years ago which alleviated some of the more pressing problems, but it remains a degenerative condition. Can't say that it has been made worse by the CML but the CML certainly hasn't improved the situation. But I look good ...it's the genes.
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
Posted 23 March 2017 - 09:03 PM
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403
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