See Side effects of targeted treatments: clinicians' perceptions, patients' realities
See also Managing the side effects in Chronic Myeloid Leukemia
Side effects of targeted treatments: clinicians' perceptions, patients' realities
Started by
survenant
, Apr 30 2016 10:27 AM
CML side effects chronic myeloid leukemia
8 replies to this topic
#2
Gail's
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Posted 30 April 2016 - 07:52 PM
The first article resonated with me. My first onc definitely thought the side effects of TKIs were no big deal but they have been to me! Thanks for posting survenant
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
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
#3
tiredblood
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Posted 30 April 2016 - 09:06 PM
You took the words right out of my mouth, Gail. After telling my first doc about side effects numerous times and really not seeing them documented in his progress notes (except for that I didn't have QT prolongation, neutropenia, etc,-- the biggies), I emailed him telling him that I was considering a dosage reduction. I had actually already lowered the dose on my own. His response to me, "No it's actually not a good idea. I need to talk to you first about what symptoms you are having. Patients used to routinely die from CML before these drugs were developed." Heck, I had talked to him about side effects I was having for the previous 20+ months, since first starting the TKI. Sure, none of the side effects were life-threatening, but they do have a cumulative effect, wearing a patient down. The first two to three weeks on the TKI, I said to myself, "If I'm going to feel like this, I had just as soon die." Thankfully, those side effects improved.
I've wondered if doctors tend to see us as whiney about side effects when a decade or so ago CML killed patients. I can understand why they would, but it is time to get out of the past and treat the here and now, throwing out any biases or arrogance. I appreciate that the author of the article took into consideration that patients have side effects and that providers should listen to their patients and not necessarily only listening as it relates to drug regimen adherence.
#4
kat73
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Posted 02 May 2016 - 12:40 PM
Hear, hear, Tiredblood. I especially like what you say about "it is time to get out of the past and treat the here and now, throwing out any biases or arrogance." Well put.
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.
#5
rcase13
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Posted 02 May 2016 - 01:23 PM
Yeah I agree. These drugs came out 16 years ago. Yes I am well aware that before that everyone died. My son had his appendix taken out. Routine surgery. But at one time if your appendix burst you would die. There are lots of diseases that are now commonly cured or managed. Time to move past that and realize we have to live like this for a very long time. I do wish more studies were being done to improve our QOL and curbing the affect they have on our bodies long term. Some of us may have to live on these drugs for 20 or more years. Or at least I hope I can.
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!
#6
Gail's
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Posted 02 May 2016 - 11:41 PM
my onc told me that she was so glad that she didn't have to watch me die from cml that a relative healthy state is a blessing. Or words to that effect. I get it, I'm grateful there's treatment. But her words came from her perspective and disregarded mine. It should be all about how the patient feels not the doc.
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
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
#7
r06ue1
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Posted 03 May 2016 - 05:25 AM
That road goes both ways; imagine being an Oncologist all your life and seeing so many patients, many of whom die while they are your patient. I've been in a war (Iraq) and can't imagine what it must be like for them, they are on the front line every day. I don't know if they ever get PTSD but if they do, I wouldn't be surprised a bit.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
#8
tiredblood
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Posted 03 May 2016 - 10:52 PM
Yeah I agree. These drugs came out 16 years ago. Yes I am well aware that before that everyone died. My son had his appendix taken out. Routine surgery. But at one time if your appendix burst you would die. There are lots of diseases that are now commonly cured or managed. Time to move past that and realize we have to live like this for a very long time. I do wish more studies were being done to improve our QOL and curbing the affect they have on our bodies long term. Some of us may have to live on these drugs for 20 or more years. Or at least I hope I can.
I enrolled in the Simplicity clinical trial/study and never got another survey like I was supposed to. I'll try to stay off my soapbox about that. Anyway, that study was supposed to survey patients for QOL on TKIs.
https://clinicaltria...how/NCT01244750
#9
Gail's
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Posted 06 May 2016 - 02:14 PM
R06ue1, I do get their point of view that it's so much better than to have to watch a person die for lack of effective treatment. Burn out in healthcare is prevalent and I would think worse in oncology. AND, I'm a patient who deserves compassion for the decreased QOL I will now experience for the remainder of my "normal" life span.
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
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
Also tagged with one or more of these keywords: CML, side effects, chronic myeloid leukemia
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