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Latest PCR report

Started by scuba , Mar 23 2016 03:01 PM

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14 replies to this topic

#1 scuba

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Posted 23 March 2016 - 03:01 PM

I just received my latest 3-month PCR test results:

bcr-abl < 0.01% (M.D. Anderson scale). Pretty much the same as last test in December.

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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#2 Frogiegirl

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Posted 23 March 2016 - 03:11 PM

Just got mine yesterday too. Pcru again! Yay. ....one more to go! Although my white count was slightly elevated,but no signs of sickness. Also my granulites% was elevated too. My nurse called and asked if I was sick or super stressed. ....um always stressed.( I know I spelled that wrong)

Scoobs, sorry to highjack your post. also congrats!

Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

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#3 kat73

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Posted 23 March 2016 - 03:44 PM

Yay, Scuba and Frogiegirl! (Baby booties, baby booties, baby booties . . .)

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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#4 Dona_B

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Posted 23 March 2016 - 05:35 PM

Congrats to you both.

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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#5 tiredblood

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Posted 23 March 2016 - 08:15 PM

That's great. Congrats x2.

How long were you PCRU before going off the Med, Scuba?

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#6 scuba

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Posted 23 March 2016 - 08:31 PM

That's great. Congrats x2.

How long were you PCRU before going off the Med, Scuba?

I was pcru for two cycles (six months) before trying cessation. My levels slowly rose, but fell back in an up/down fashion. It was close enough to MMR threshold after nine months that I decided to re-start and "test" the theory that prior response is restored. That is what happened. I am back to where I started (i.e "undetectable"). To quote my doctor, "there is little if any difference between this (e.g. bcr-abl < 0.01%) and undetectable".

I take 20mg Sprycel and a lot of Curcumin (...and vitamin D3, vit. C, k2, .....). I thought about testing the idea of stopping Curcumin and see if 20mg Sprycel is sufficient to keep me at barely detectable, but Curcumin has helped in so many other ways (no more arthritis or inflammation).

My plan is to test stopping Sprycel in a year or pulse on and off (one month on/one month off).

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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#7 SUE

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Posted 26 March 2016 - 09:42 AM

Congratulations, Michael and Frogiegirl!

Sue

Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;

August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR 6.8

May,2014 PCR .149

Aug, 2014 PCR .015

Nov. 2014 PCRU

March, 2016 went down to 40mg Sprycel

Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.

Nov 1 2016 resumed Sprycel 20 mg daily

Dec 2016 PCRU

March 2017 PCR 0.020

May 2017 PCRU

Sept 2017 PCRU

Dec 2017 PCRU

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#8 Harper3994

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Posted 26 March 2016 - 02:08 PM

Hi scuba..diagnosed in July 2015. Have learned so much from everyone here. Could you explain to me about the curcumin. I take Tasigna...currently 300 mg a day because the 600 mg a day was making my Lipase go way up. Does it really make a difference?

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#9 scuba

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Posted 26 March 2016 - 02:52 PM

Hi Harper3994 ...

I believe Curcumin makes big difference in that it enables me to take far less Sprycel than I probably would otherwise need. Curcumin is no "cure" - it just makes life difficult for CML cells - slows them down, interferes with their division and ultimately contributes to apoptosis (cell death). Combined with Sprycel, it packs a more powerful punch. I get by with much less Sprcyel as a result with no side effects that I can feel. I am borderline PCRU if not at PCRU already. I only take 20mg Sprycel (1/5th the normal dose).

It's important to note that I take a lot of Curcumin daily - between 6-8 grams per day with and without food. Curcumin is not very bio-available hence the high gram amount. I would continue to take Curcumin even if I was cured of CML. It is a great anti-inflammatory and has 'eliminated' my arthritis. That is a side benefit.

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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#10 Harper3994

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Posted 26 March 2016 - 03:27 PM

Thanks for this info. Do you get it at a health food store or pharmacy? I usually get my vitamins at SAm's.

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#11 scuba

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Posted 26 March 2016 - 06:39 PM

Thanks for this info. Do you get it at a health food store or pharmacy? I usually get my vitamins at SAm's.

PM me and I'll link for you where I buy mine.

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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#12 Melanie

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Posted 27 March 2016 - 10:16 PM

Great news Scuba and Frogiegirl! Very happy for you two!

Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)