Jump to content


Photo

Dose to be reduced ...


  • Please log in to reply
14 replies to this topic

#1 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 21 September 2016 - 01:24 PM

I just had my latest PCR result come back at < 0.01% (M.D. Anderson scale). bcr-abl was "detected", but not quantifiable. I no longer have to have PCR tests every three months. My next test will be in six months. If the result is the same, I switch to annual check.

 

But most important .... I don't have to have any more bone marrows which I had to have annually to keep track of other bone marrow issues.

 

I asked that my dose be reduced from 20mg to 10 mg - to see if that will be sufficient to keep me where I am at. We'll see.


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"


#2 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 21 September 2016 - 02:34 PM

Really glad to see you continue to do so well, Scuba!  What do you mean by "M.D.Anderson scale"?  Don't they use International Scale?


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.


#3 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 21 September 2016 - 03:01 PM

Really glad to see you continue to do so well, Scuba!  What do you mean by "M.D.Anderson scale"?  Don't they use International Scale?

 

M.D. Anderson uses their own scale because they can. Correlation studies have shown that International Scale is roughly 0.35 M.D. Anderson's value. So my < 0.01 is roughly < 0.004. Regardless - the value on both scales is too low to be "useful" as a measure. All it means is that bcr-abl protein transcripts "exist" in my blood - or not. The "not" being it could be a false positive. Practically speaking I am borderline PCRU. 

 

(Additionally, MMR in M.D. Anderson scale is reported as PCR < 0.3%, as opposed to 0.1% for I.S.)


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 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 21 September 2016 - 03:32 PM

CONGRATS!!!!!!

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!


#5 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 21 September 2016 - 03:37 PM

I can only imagine taking 1/10th the dose of Tasigna. Please report back if you feel a difference in side effects. I just had my yearly echo on my heart as required on Tasigna. I bet at 1/10th the dose I wouldn't have to have that test.

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 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 21 September 2016 - 04:01 PM

Rcase - I haven't had any side effects I could feel since taking 20mg Sprycel. I'm sure it is affecting me in other ways because my RBC count is below normal (mild anemia) only when I take the drug.


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 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 21 September 2016 - 04:26 PM

Congratulations Scuba.  It's great to know that you are doing so well (and annoying that the pesky tests are so sensitive they can still detect such low levels!)



#8 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 21 September 2016 - 06:51 PM

Congrats!  Aren't you a little nervous about going to 10 mg with only 6 month PCR test?  I would be. 

 

That said, I've been doing 25 mg Sprycel (cutting my 50s in half) for a bit over a month and my latest PCR was zero (at least that's what the nurse said over the phone, though she did have difficulty reading the report.  I need to get a copy to verify.  I currently have 3 month PCRs, but only see the doc every 6 months so haven't seen the report with my own eyes).

 

Anyway. . . hope your results continue to be excellent.

 

Marnie



#9 r06ue1

r06ue1

    Advanced Member

  • Members
  • PipPipPip
  • 426 posts
  • LocationEarth, Solar System, Milky Way, Local Group, Virgo Supercluster, Laniakea

Posted 22 September 2016 - 07:53 AM

Congrats Scuba!  

 

If you lower your dose to 10mg, will you get more frequent testing?  Just want you to be safe.


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


#10 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 22 September 2016 - 08:56 AM

Congrats Scuba!  

 

If you lower your dose to 10mg, will you get more frequent testing?  Just want you to be safe.

 

I just heard back from my doctor and he's fine with me lowering dose to 10mg...but not 20 mg every other day as I had wanted to do. I'll have to wait until I run out of 20 mg tablets as it is near impossible to split the already tiny pills. And the 10mg is a special order. 

 

I won't require frequent testing even on reduced dose. When I stopped Sprycel altogether to try cessation, I never lost MMR even after nine months - well past the six month window. My history is why my treatment is customized. CML can be a very slow disease when in chronic phase and is that way for me (blasts < 3%; zero even better, my blasts are zero). After six months, if my PCR were to climb I would certainly catch it long before it would become an issue. And I would still be taking 10mg at that time.

 

I fully expect 10mg to be sufficient to keep my CML where it is. I just don't need much for it to work apparently. Of course I am doing other "nutrition" based things that I am fairly convinced helps what little Sprycel I take do its job.

 

I actually very much want to try cessation again, but then I would have to be tested every month. Taking Sprycel is almost worth not having to drive/park/wait at M.D. Anderson! When my doctor agreed I don't have to be tested but for every six months, I rejoiced just on that fact alone (no driving there).


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"


#11 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 22 September 2016 - 05:21 PM

Good news Scuba

How small are the tablets, I have a pill cutter and it is triangular near the cutting blade and use it to cut my tiny cholesterol med in half.

#12 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 22 September 2016 - 06:20 PM

Good news Scuba

How small are the tablets, I have a pill cutter and it is triangular near the cutting blade and use it to cut my tiny cholesterol med in half.

 

They're almost microscopic.


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"


#13 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 23 September 2016 - 06:24 AM

Congratulations Scuba.  It's great to know that you are doing so well (and annoying that the pesky tests are so sensitive they can still detect such low levels!)

Scuba,

 

Good news! Especially with no more BMBs in your future!!

 

Hi, PhilB,

 

It's always nice to find a post from you.

 

My onc mentioned yesterday that the tests continue to get more sensitive. 


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#14 Taylor

Taylor

    Member

  • Members
  • PipPip
  • 17 posts

Posted 23 September 2016 - 08:43 PM

Scuba, do you know why Dr. Cortes doesn't want you to do every other day? I'm doing 100mg every other day test on my own, wondering if I should split the pills and do 50mg per day? Or would your dose be so low that it could get concerning to split it apart, considering Sprycel's half-life?



#15 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 24 September 2016 - 07:38 AM

Scuba, do you know why Dr. Cortes doesn't want you to do every other day? I'm doing 100mg every other day test on my own, wondering if I should split the pills and do 50mg per day? Or would your dose be so low that it could get concerning to split it apart, considering Sprycel's half-life?

 

I haven't asked him yet. Personally I don't think it should matter, but his experience is probably at work here.


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"





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users