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Chronic Myelogenic Leukemia Management in the TKI Era: Patient Compliance is Still Critical


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#1 mikefromillinois

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Posted 10 June 2016 - 02:51 PM

The National CML Society linked this article on their Facebook page today.  Interesting comments on the last page of the article about "patient compliance".

 

http://www.cancerthe...article/502156/

 

 



#2 thatguy

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Posted 10 June 2016 - 03:06 PM

The National CML Society linked this article on their Facebook page today.  Interesting comments on the last page of the article about "patient compliance".

 

http://www.cancerthe...article/502156/

 

 

I feel like that last paragraph on page 3 could possibly be directed towards this board. lol


3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#3 scuba

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Posted 10 June 2016 - 03:33 PM

I feel like that last paragraph on page 3 could possibly be directed towards this board. lol

 

You mean this comment:

 

"Multiple dietary supplements and polypharmacy could conspire to diminish the effectiveness of TKI treatment, particularly among elderly patients. "We just don't know," Dr Lipton said. "The more you throw into the mix, the more likely there will be an effect.""

 

It's probably very true that TKI's + other stuff could conspire to diminish the effectiveness of TKI treatment. But some TKI's work better in conjunction with some added nutrients. The key is to know which ones. Also - if your TKI can be taken without food - best to do that so it can absorb on its own and be in the blood stream without any other supplement or polypharmacy interacting with it. I take my Sprycel completely by itself at bedtime - several hours after last anything eaten and many hours before anything is eaten. My supplements are usually taken with food and never taken with Sprycel. 

 

Gleevec on the other hand needs to be taken with food if only to minimize nausea. It probably has more issues with absorption and interaction as a result.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#4 gerry

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Posted 10 June 2016 - 05:07 PM

I always ran any supplements past my doc and pharmacist, plus took them well away from the Gleevec. If Gleevec had been a perfect drug (no side effects) it would not have been necessary. I have even returned to taking celery seed again as my cholesterol med gives me worse muscle cramps than the Gleevec did.

#5 tiredblood

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Posted 10 June 2016 - 07:55 PM

I feel like that last paragraph on page 3 could possibly be directed towards this board. lol

I get the idea the good doc gets frustrated because real live patients can't be controlled like the mice in the lab.



#6 scuba

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Posted 10 June 2016 - 08:52 PM

I get the idea the good doc gets frustrated because real live patients can't be controlled like the mice in the lab.

 

mice-4.jpg


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#7 thatguy

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Posted 11 June 2016 - 01:13 AM

Yes, I imagine doctors, like anyone else, don't like people "suggesting" information regarding their profession, or challenging their advice. I'm anticipating that collectively we probably all have started at least one sentence with our doc, "I was reading online and..." lol


3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#8 SusanL

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Posted 11 June 2016 - 01:35 PM

thanks for the laugh about "docs not appreciating - being informed".  My onc gave me the CML web site when I was first diagnosed not realizing I would become her worst night mare.  I'll never forget the day she kindly told me, "the patients that do the best are the ones that get their information from their dr.".  Which is it, oh, professional.



#9 SusanL

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Posted 11 June 2016 - 01:37 PM

I didn't finish that previous post.  After 10 yrs we have struck a balance. I pick and choose what I educate her on, she admits she doesn't have time to read all the research in the pipe line and we really do WORK together on my treatment.



#10 Gail's

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Posted 11 June 2016 - 03:24 PM

Mine asked where I got my information. Started sending her links to professional articles (very selective and few in number). I don't think she read any. Yes, she's busy, but I wanted her to remember that I was reading and not reading only patient opinions. So many people do read and learn more about their illnesses than their docs and eventually surpass them in understanding the disease. The docs supply prescriptive authority so we can get our drugs and also their experiences working with others with our disease. But we should keep in mind that their experience with CML is limited by the small number of us out there. We have many allies here from all over the world, so even get a broader view. Wish they had the time to read our forum.
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

#11 scuba

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Posted 11 June 2016 - 07:58 PM

Mine asked where I got my information. Started sending her links to professional articles (very selective and few in number). I don't think she read any. Yes, she's busy, but I wanted her to remember that I was reading and not reading only patient opinions. So many people do read and learn more about their illnesses than their docs and eventually surpass them in understanding the disease. The docs supply prescriptive authority so we can get our drugs and also their experiences working with others with our disease. But we should keep in mind that their experience with CML is limited by the small number of us out there. We have many allies here from all over the world, so even get a broader view. Wish they had the time to read our forum.

 

In fairness to the doctors, they have liability. So there is zero incentive for them to go "outside the box" and consider anything that a patient supplies to them. Research doctors are a different type of individual. They are more scientist than doctor and have an innate curiosity about that which they study. They react a bit differently to new information. But as researchers, it's their job to "consume" research results.

 

Traditional - well understood - diseases (if there is such a thing) is fine for doctors - but cancers that are just now becoming better understood along with their treatments require scientists who are top in their field. 

 

You are correct that most doctors supply prescriptive medicine. That's all they do. They will not likely try something else regardless what they read. Their livelihoods depend on them not "screwing up".

 

For my annual physical - and when I need a common prescription  - I go see a doctor. For my CML - I see a specialist researcher top in his field.

 

For those who can't see a top researcher - we have Trey. Right here -  on this forum. He's better than most of the doctors who have a license to practice CML medicine out there - albeit I disagree with him from time time.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#12 gerry

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Posted 11 June 2016 - 11:09 PM

I am always grateful to my doc for changing his view on the TKI. When I originally saw him he was a keep hitting the CML hard guy. But after discussions when I achieved a year of PCRU he allowed me to decrease dosage and then with two years PCRU he was agreeable for me to try stopping. If it wasn't for this forum and my doc, I would more than likely still be taking 400mg Gleevec.

#13 gerry

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Posted 12 June 2016 - 05:06 PM

http://www.haematolo...ntent/101/6/657

#14 r06ue1

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Posted 13 June 2016 - 05:39 AM

Our 10 year survival is 83%?  Does this mean the CML comes back or that they died of something else?  


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


#15 gerry

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Posted 13 June 2016 - 06:52 AM

If I am reading it correctly the review is over a 10 year period. It indicates that a small percentage of us will progress to blast phase and for a number of others due to age they may not be consistent in taking their TKI.

#16 beno

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Posted 14 June 2016 - 11:48 AM

Our 10 year survival is 83%?  Does this mean the CML comes back or that they died of something else?  

The 83% is compared to a normal population so the study controls for dying of other causes.  It says in the text that 5-7% progress to blast crisis and 5-10% are receiving sub-optimal treatment, like Hydrea, or they are unable or unwilling to adhere to prescribed medication.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#17 Trey

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Posted 14 June 2016 - 07:11 PM

These studies use data from the timeframe when only Gleevec was available (2002 - 2006).  At that time there were quite a few failures on the one drug, and survival was not as high.  Now that there are 5 TKI drugs the survival data is much higher.



#18 r06ue1

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Posted 15 June 2016 - 05:04 AM

Still a nice increase from Hydrea and who would have ever thought that Hydrea could keep people alive for ten years (or more)?  Not a very high rate but still not zero either.


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


#19 rcase13

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Posted 15 June 2016 - 04:27 PM

wow hard to imagine people living on hydrea for 10 years. I was on it for one week and my liver numbers sky rocketed.


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!


#20 tiredblood

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Posted 13 July 2016 - 08:36 PM

I just re-read the linked article in the original post. I sense such arrogance in some of the comments stated in the article. To the good doc(s), I'd say, "You take the damned pills and then we'll talk."  At times, the side effects have been near debilitating to me (recently in fact), especially when they all come on at once. Thankfully, they tend to come and go.  If the good doc(s) made some of those comments in my presence, I'd light into them, I think.  I decided the first three weeks on the TKI that death would be better than the way the TKI made me feel. Fortunately, the side effects eventually improved.  I remember those first few weeks, looking up and catching a  glimpse of my supervisor with tears rolling down her face because she could tell I didn't feel well at all.






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