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Question for Trey

Started by jmoorhou , May 29 2017 11:26 AM

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29 replies to this topic

#21 Trey

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PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 27 July 2017 - 03:19 PM

I wanted to get rid of those stupid random muscle cramps. Never could shake them even on low dose Gleevec. Went with 20mg Sprycel and they went away completely.

Secondly I just thought changing drugs after 10 years might reduce the "chance" of any long term buildup of an unknown side effect issue with Gleevec. I did not know of any, but it was a secondary consideration without any real facts to support it.

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#22 kat73

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Members
884 posts

LocationWashington, DC area

Posted 27 July 2017 - 04:29 PM

Trey - Have you gotten your "undetectable" back on 20 mg Sprycel?

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.

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#23 Trey

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LocationSan Antonio, Texas

Posted 27 July 2017 - 07:44 PM

Regained within one PCR cycle (6 months) so somewhat less than that time period.

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#24 rcase13

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Members
523 posts

LocationCharlotte, NC

Posted 27 July 2017 - 09:19 PM

I have the same issue with Tasigna lowering heart beat. My heartbeat prior to CML was around 65 70. I am no athlete. Now I am routinely in the 50s. I also firmly believe it has raised my blood pressure.

As far as hemorrhoids I can't really say. If anything it seems to improved that particular issue. As well as my arthritis in my hands. CML arthritis and hemorrhoid pill all in one!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg

04/08/2015 0.01% Tasigna 600mg

07/01/2015 0.01% Tasigna 600mg

10/05/2015 0.02% Tasigna 600mg

01/04/2016 0.01% Tasigna 600mg

04/04/2016 PCRU Tasigna 600mg

07/18/2016 PCRU Tasigna 600mg

10/12/2016 PCRU Tasigna 600mg

01/09/2017 PCRU Tasigna 600mg

04/12/2017 PCRU Tasigna 600mg

10/16/2017 PCRU Tasigna 600mg

01/15/2018 PCRU Tasigna 600mg

Cancer Sucks!

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#25 chrissy778

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177 posts

LocationTroy, New York

Posted 05 August 2017 - 06:12 PM

Trey can I ask what your white count was at diagnosis. Were your platelets elevated and also was your spleen enlarged. Thank you

Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of

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#26 Trey

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LocationSan Antonio, Texas

Posted 06 August 2017 - 09:10 AM

WBC 100K, PLT 1 Million, spleen pain from significant enlargement

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#27 chrissy778

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177 posts

LocationTroy, New York

Posted 07 August 2017 - 09:07 PM

Thank you... my Dr had mentioned some patients come off TKIs or lower their dosage but did not think it was a a good idea because my numbers were so high at diagnosis.. I actually have not been undetectable for a year yet anyhow so I would never, but worry am I worse off because my numbers were high.. my white count was 229k and my platelets were triple.. the spleen large also..

Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of

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#28 Gail's

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Members
634 posts

Posted 08 August 2017 - 07:22 AM

I'm no expert, Chrissy, but I think the high numbers at diagnosis would only tell you how long you had CML prior to knowing. Like the longer you have it, the higher your numbers. From what I've read, the indication for stopping treatment is how quickly and deeply you responded, and how long you've maintained a deep response.

Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

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#29 Trey

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PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 08 August 2017 - 07:55 AM

Chrissy,

Success at cessation seems to be fairly random, but may become more defined over time. Those numbers by themselves would not clearly indicate an issue. But other factors such as being in Accelerated Phase might. It may also be that longer time to PCRU might indicate less likelihood of success at lower dosage on that particular drug, but another drug using low dosage might work. This is still very much a trial and error approach to all of this with very few clear indicators of who will be successful at what.

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#30 gerry

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Members
1,035 posts

Posted 08 August 2017 - 05:14 PM

One of our members (Chris) had high numbers and an enlarged spleen (if I remember correctly). Chris has been off a TKI for around 6 years I would think now.
As Trey said they don't know yet why some of us can stop and others can't. Hopefully they work it out sooner rather than later.

If you get to the point of 2 years PCRU and your doc is happy for you to have a go at cessation, then you should try if you want. Always with the knowledge that it might not work of course.