I read that today is National Cancer Survivors Day. It made me wonder how people with CML define survivorship since for the great majority of us the CML requires that we take a tki for life. So, is survivorship when you reach MMR or undetectable or something else? Just curious as to how others view It.
How do you define survivorship?
Started by
gagne
, Jun 05 2016 08:51 PM
8 replies to this topic
#1
gagne
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Posted 05 June 2016 - 08:51 PM
April 2015 CML Diagnosed 53.4% BMB
May 2015 Started 400mg Gleevec
August 2015 2.2%
November 2015 0.062%
February 2016 0.045%
March 2016 started 400mg generic Gleevec (Sun Pharmaceutical brand)
May 2016 0.025%
September 2016. 0.007%
December 2016 0.009%
February 2017 Undetectable!
September 2017 Undetectable!
May 2015 Started 400mg Gleevec
August 2015 2.2%
November 2015 0.062%
February 2016 0.045%
March 2016 started 400mg generic Gleevec (Sun Pharmaceutical brand)
May 2016 0.025%
September 2016. 0.007%
December 2016 0.009%
February 2017 Undetectable!
September 2017 Undetectable!
#2
RayT
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Posted 05 June 2016 - 09:10 PM
I define "cancer survivor" as anyone who has been diagnosed with cancer and is still alive. Why complicate it?
#3
gagne
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Posted 05 June 2016 - 09:28 PM
RayT: I feel that way too but I was curious as to what others think. I figure that every day that I am still alive is a bonus!
April 2015 CML Diagnosed 53.4% BMB
May 2015 Started 400mg Gleevec
August 2015 2.2%
November 2015 0.062%
February 2016 0.045%
March 2016 started 400mg generic Gleevec (Sun Pharmaceutical brand)
May 2016 0.025%
September 2016. 0.007%
December 2016 0.009%
February 2017 Undetectable!
September 2017 Undetectable!
May 2015 Started 400mg Gleevec
August 2015 2.2%
November 2015 0.062%
February 2016 0.045%
March 2016 started 400mg generic Gleevec (Sun Pharmaceutical brand)
May 2016 0.025%
September 2016. 0.007%
December 2016 0.009%
February 2017 Undetectable!
September 2017 Undetectable!
#4
Buzzm1
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Posted 05 June 2016 - 10:11 PM
gagne and RayT, I agree with you both ....
from the internet: Leukemia - Chronic Myeloid - CML - Survivorship.
What is survivorship?
http://www.cancer.ne...ml/survivorship
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
#5
gagne
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Posted 05 June 2016 - 10:24 PM
Buzzm1: Thank you for that link! It has a great definition of survivorship.
April 2015 CML Diagnosed 53.4% BMB
May 2015 Started 400mg Gleevec
August 2015 2.2%
November 2015 0.062%
February 2016 0.045%
March 2016 started 400mg generic Gleevec (Sun Pharmaceutical brand)
May 2016 0.025%
September 2016. 0.007%
December 2016 0.009%
February 2017 Undetectable!
September 2017 Undetectable!
May 2015 Started 400mg Gleevec
August 2015 2.2%
November 2015 0.062%
February 2016 0.045%
March 2016 started 400mg generic Gleevec (Sun Pharmaceutical brand)
May 2016 0.025%
September 2016. 0.007%
December 2016 0.009%
February 2017 Undetectable!
September 2017 Undetectable!
#6
RayT
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Posted 08 June 2016 - 01:48 PM
Buzzm1, ditto to what Gagne wtote... :-)
#7
kat73
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Posted 08 June 2016 - 02:06 PM
IMHO, it has become a pretty meaningless term. I don't begrudge anyone calling oneself anything one wants to, but for me, it needs to be defined by being cured: "I had cancer - past tense - it was treated and it's gone, all of it, and nevermore will it rear its ugly head again. I went through hell and I triumphed. I survived." When I go looking for tales to inspire me, it's those I want to find. I think we need to find another word for those who are still in the fight - living WITH cancer. I don't like "victim" or "sufferer," but for me, "survivor" is whistling past the graveyard. Maybe "cancer fighter?"
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.
#8
Antilogical
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Posted 08 June 2016 - 05:00 PM
I call myself a cancer patient.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
#9
Dona_B
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Posted 09 June 2016 - 12:34 PM
I read the posts in this thread, thought I agree, end story; but today as I was remembering friends and friends of friends with cancer realized there is more. Some fight the fight, receive their "Ned" (no evidence of disease) and go on which from the outside looks like a normal life...work, family, chores, etc.... Others fight it and continue to fight the residual effects. One of my friend's Facebook status included three health concerns with "I survived cancer. I may not survive the cure." Unfortunately she is not the only one. Another one I see from time to time and we share our woes, laugh, and go on. Another one is fighting but is on the losing end at this moment. Relatives and friends are rallying around to pray and help in any way they can. Most of us here are in for longer fight but with the hope of a better outcome than 15 some odd years ago.
So to me, a survivor plays the hand one is dealt and in general makes the best of it. And one of the better things is this forum and all of you guys.
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
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