Accelerated treatment plan
#1
Posted 21 November 2017 - 12:25 AM
I am writing on behalf of my husband. He was diagnosed at age 50 with CML in chroinic phase and started on gleevac 400mg as most people do. He had slow response to this treatment his PCR moved from 79 to 40 in 6 months. During that time suffering with the typical muscle cramps. At 7 months of treatment he started with weight loss and increasing fatigue to discover his PCR had risen to 84 with enough circulating blasts to have accelerated phase CML. He had been using protonix daily for heartburn, this was stopped. He was switched to Sprycel 70 twice a day, which brought down his PCR to 0.3 over 4 months. He developed pleural effusions requiring drainage and dose was lowered to 70mg daily. He has maintained this dose for the last 10 months his PCR has stayed between 0.2 and 0.8 until last month moving to 1.2. He has had no further pleural effusions, mild muscle aches but mostly tolerating well. Doc suggests switching to Tasigna 400mg twice a day. We are leary to make another switch. Looking for feedback on possibly increasing Sprycel to 100mg or Tasigna at a lower dose?
#2
Posted 21 November 2017 - 07:39 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!
#3
Posted 21 November 2017 - 08:27 PM
I am writing on behalf of my husband. He was diagnosed at age 50 with CML in chroinic phase and started on gleevac 400mg as most people do. He had slow response to this treatment his PCR moved from 79 to 40 in 6 months. During that time suffering with the typical muscle cramps. At 7 months of treatment he started with weight loss and increasing fatigue to discover his PCR had risen to 84 with enough circulating blasts to have accelerated phase CML. He had been using protonix daily for heartburn, this was stopped. He was switched to Sprycel 70 twice a day, which brought down his PCR to 0.3 over 4 months. He developed pleural effusions requiring drainage and dose was lowered to 70mg daily. He has maintained this dose for the last 10 months his PCR has stayed between 0.2 and 0.8 until last month moving to 1.2. He has had no further pleural effusions, mild muscle aches but mostly tolerating well. Doc suggests switching to Tasigna 400mg twice a day. We are leary to make another switch. Looking for feedback on possibly increasing Sprycel to 100mg or Tasigna at a lower dose?
Did they do a mutation analysis? There is a reason why the tki's stopped working. I was on 50mg of Sprycel for 4 years and did well until I developed a mutation. I am now in a clinical trial for ABL001. I would ask for a mutation analysis to see where he stands.
Lynne Dagata
ldagata65@gmail.com
"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins
#4
Posted 22 November 2017 - 10:55 AM
duke - I responded to the other (duplicate) thread.
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.
Also tagged with one or more of these keywords: accelerated, med switch, sprycel, tasigna
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