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Well... sh*t. Guess Ill switch to Bosulif

Started by JPD , Jul 14 2016 06:39 PM

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13 replies to this topic

#1 JPD

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Posted 14 July 2016 - 06:39 PM

Most recent test came back .34%. Doctor says he recommends staying the course because I tolerate the side fx of Tasigna very well. HOWEVER, he also says that some researchers/experts believe in being aggressive to get down below that .10% and that it all depends on what "experts" you listen to (my Onc is Dr. Luke Ackard, according to what Ive been able to find out, the best Indiana has to offer). He says the docs at MD Anderson would probably feel comfortable with staying the course. That doesnt seem sensible, but none of this does.

I'm gonna go have a consult with him (just spoke to him today briefly over the phone) and tell him I want to switch to Bosulif. Guess Ill start reading up on the side fx fun of that one.

Thoughts?

January 15: .53%

April 15: .78%

July 15: 1.1% - upped dosage to 400mg after this test

Oct 15: .85%

December 15: .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

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#2 jmoorhou

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Posted 14 July 2016 - 06:49 PM

I would go the course, why switch if you don't have to. Most people in their sixties are probably on the edge of having CML, we just had a big dip.....that's what I like to think anyway...

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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#3 JPD

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Posted 14 July 2016 - 07:12 PM

Because I'm 48 and wanna live at least another 12 years or so. It sucks being a turtle.

January 15: .53%

April 15: .78%

July 15: 1.1% - upped dosage to 400mg after this test

Oct 15: .85%

December 15: .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

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#4 thatguy

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Posted 15 July 2016 - 12:56 AM

My 500 MG Bosulif is coming tomorrow, JPD. I've been dragging my feet, since i felt great on Tasigna,but figured it probably wont hurt to try it, (and fighting with my doc got old).

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)

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#5 chriskuo

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Posted 15 July 2016 - 02:25 AM

Plateaus are common. You are not really a turtle, some people take 4-6 years to get from CCyR to MMR.

Statistically, your results have not really moved up. I would stick with it for a while longer to see if you break through the plateau in the next 6-12 months.

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#6 beno

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Posted 15 July 2016 - 08:37 AM

I'm just getting started, but my onc has already told me there is no timeline necessary to reach MMR. She said some people take years and others never get there, but as long as you reach CCyR, you can live a normal life span.

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

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#7 JoshLee

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Posted 15 July 2016 - 11:23 AM

Your results are basically flat. You are WELL below CCyR and plateaus are quite common. I was plateaued at 1% for two years and .4 for a about a year..... .2 for a few years .1 for a year and now I'm around 0.06%. I can tell you that you are SAFE and that there is no rush to get to MMR. There is some benefit to it, but it doesn't tell the whole story. In emails with Dr. Druker he told me that he has patients in his practice that have never gotten MMR, but have stayed CCyR and that he considers it a functional MMR. Also my first oncologist in his practice had a patient that took 8 years to get there on gleevec. I'm sure you feel like "Why isn't this working", but it IS working. Your increase is negligible and you have maintained CCyR for a period of time. Unless you see a trend there is no reason to panic. I spent a few very tough years mentally racking my brain over and over...wanting things to be faster and to improve. I missed out on a few years of my life being very anxious and it is one of my regrets. Just trust the process and your doctor and give it a bit more time. Tasigna has great stats.

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#8 r06ue1

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Posted 15 July 2016 - 11:47 AM

I agree with other posters, give it more time, you are not losing a log, that would be when you change drugs. You are also not having bad side effects which might change with a medication change as our bodies react differently to different meds.

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

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#9 JPD

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Posted 15 July 2016 - 12:37 PM

THANKS GUYS AND GALS

I'm feeling a little less depressed today. I think I'll talk to my Onc, but probably give it another test or two. Might even start taking the Curcumin that Scuba recommends

January 15: .53%

April 15: .78%

July 15: 1.1% - upped dosage to 400mg after this test

Oct 15: .85%

December 15: .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

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#10 scuba

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Posted 15 July 2016 - 12:55 PM

THANKS GUYS AND GALS

I'm feeling a little less depressed today. I think I'll talk to my Onc, but probably give it another test or two. Might even start taking the Curcumin that Scuba recommends

And make sure your vitamin D level is high normal at a minimum (i.e. > 50ng/ml, <100 ng/ml).

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"

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#11 CallMeLucky

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Posted 18 July 2016 - 04:00 PM

Curious if you tried Sprycel yet. I agree with others you should give it some more time.

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

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#12 JPD

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Posted 19 July 2016 - 05:39 PM

Curious if you tried Sprycel yet. I agree with others you should give it some more time.

no, Tasigna is my first.

January 15: .53%

April 15: .78%

July 15: 1.1% - upped dosage to 400mg after this test

Oct 15: .85%

December 15: .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

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#13 jmoorhou

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LocationOutside of San Francisco

Posted 05 August 2016 - 08:35 PM

It does suck being a turtle. I feel my quality of life has really been affected by this fatigue, it's probably from low hemocrit, which you need to walk...

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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#14 DebDoodah22

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Posted 06 August 2016 - 11:15 AM

Jmoorhou. - The fatigue thing is tough to figure...you'd think after your numbers go down your energy would improve but not necessarily. Year 3 of Srycel, 80 mg, age 64, and never more tired and out of shape despite improving numbers. ( .0167).
i was hoping when the counts went down and blood normalized, my stamina would rebound...not so. Spent my entire vacation resting more to see if it was just the impact of a stressful job....at the end of 8 days rest, affect good, stamina low. So, at undetectable you are still fatigued?

JPD...why did they not try Sprycel, do you take BP meds?