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20mg. Sprycel: Results are in ...


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#1 scuba

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Posted 13 February 2012 - 11:59 AM

I had my 3 month PCR taken at M.D. Anderson last week and my results came back this morning.

PCR = 0.06% (intl scale)

Three months ago my results were 0.12% (intl scale). I take 20mg Sprycel, so I guess this is good news. I half expected a bigger drop. No word from Dr. Cortes yet on his view of the results. Given where I started (failed Gleevec, severe myelosuppression), I'll take the zero's.

For those contemplating cutting their Sprycel dose - feel free to provide these results to your doctor.


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 Trey

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Posted 13 February 2012 - 01:41 PM

Very good news.  I hope this also helps advance the issue of individualized dosage of TKI drugs. 



#3 scuba

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Posted 13 February 2012 - 05:17 PM

Thanks, Trey. I had hoped it would have been lower by a log or two. And I agree that custom dosing is very important. One size does not fit everyone.


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 pammartin

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Posted 13 February 2012 - 06:28 PM

Great news!



#5 scuba

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Posted 13 February 2012 - 07:45 PM

Thanks, Pam ....

I just heard from Dr. Cortes. He likes the result and said it is a "very nice drop". He wants me to just continue the dose ... see you in three months for the next PCR.

I can tell you that if 20mg. will keep me in remission with no progression, I can do this (apart from the cost). I have no side affects that I can detect or feel. If 20mg. is this effective - then others can benefit from this. I do take Curcumin, however - and there is thinking that the Curcumin is helping 'enhance' the low dose. It's just a guess, but it is my strategy so far...

... along with a nice Cabernet and an Arturo Fuente Work of Art. My wife is somewhat concerned about my "new energy".


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"


#6 pammartin

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Posted 13 February 2012 - 08:19 PM

Awesome reason to be concerned. 



#7 Judy2

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Posted 13 February 2012 - 09:45 PM

Hi Scuba,

Congratulations. It is wonderful to hear of someone doing well on such a low dose. You must be thrilled!!!

Judy



#8 janne

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Posted 13 February 2012 - 10:36 PM

Scuba,

Yet another amazing result ! Congratulations !!

Janne


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#9 ChrisC

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Posted 13 February 2012 - 10:58 PM

Yay Scuba-do!  Little by little on just a little: it works for you Congratulations. [remember to update your bio!]

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#10 LivingWellWithCML

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Posted 14 February 2012 - 01:01 PM

Amazing - congratulations.  You should be super stoked, especially since you're only on 20mg.  I will have a glass of Cabernet this evening to celebrate your good results.

So, the big question - are you convinced that Curcumin is a factor in your response (given the low TKI dose)?


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#11 Cathy

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Posted 14 February 2012 - 01:08 PM

Hi,

Great news! congradulations! Have a glass of wine for me also!

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#12 scuba

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Posted 14 February 2012 - 02:49 PM

Hi Dan,

I don't know. Jury is out in my mind whether the Curcumin is the reason why I am having a good response on low dose (20mg) Sprycel. But I can tell you that I am not wanting to test it by going off Curcumin and see what happens.

Dr. Aggarwal (Curcumin guru at M.D. Anderson) sure believes it is the Curcumin augmenting the Sprycel and encourages me to "keep it up". Dr. Cortes is non-committal. But I certainly have his curiosity.

What I did is research the heck out of this disease (CML) including reading the research papers and re-freshing my biochemistry and blood gentics. Then I read all of Trey's excellent research summary's and links he posted for this forum to gain perspective and background information sufficient to ask the best questions I could of my first Oncologist. It was at that time I felt I needed to visit with a top expert in the field to learn the latest thinking and to take charge of my own care. My first Oncologist did not know more than Trey does regarding CML. Dr. Cortes knows more than Trey does on CML - so he was the one I selected.

Along the way, I discovered Curcumin's effect with Dasatinib (Sprycel) on colon cancer and learned that the two chemicals together would not be harmful to me when taken together:

http://www.ncbi.nlm....les/PMC3162943/

http://www.researchg...cells?jtp=false

So I decided to be my own guinea pig and try the combination myself. At first I was taking 70mg. Sprycel as per Dr. Cortes' initial prescription after he took me off Gleevec as well as taking Curcumin and I went into an immediate myelosuppression that was severe (two weeks was all it took to crater my cell counts - horrible mouth sores and bad feeling all around). For all I know, the Curcumin enhanced the 70mg. Sprycel tremendously that led to the severe suppression. I stopped Sprycel at Dr. Cortes request but continued taking Curcumin. It was interesting that Dr. Cortes did NOT want to have me receive stim shots (Neupogen). He just wanted time to work to recover my counts. My counts hardly improved over several months. Dr. Cortes thought I should recover my counts in a few weeks. He told me my recovery was similar to stem cell transplant rates. I believe it was the Curcumin that was still working to attack CML cells and cause apoptosis, but my normal system was not responding very fast. Essentially my bone marrow was emptied of CML to some degree and my normal system has not responded yet. During this time of no sprycel, my PCR was steady, but did show a slight increase. I knew that Curcumin may be helping, but the Ph+ chrmosome was still busy. My peripfheral FISH level, however, went to zero which was a surprise.

After 3 months and cell counts recovered, I was re-started on 20mg. Sprycel (May 2011). I was surprised that Dr. Cortes did not start me at 40mg. He went straight to 20mg. He said he wanted to start me low, measure the myelosuppression and then track my CML burden and increase my Sprycel upward over time. He was pleased that my cell counts did not fall as much and I was able to stay on the drug. It was at this time that he felt my bone marrow was recovering with normal cells and re-populating. He did say that Sprycel does supress normal cells (c-kit), but that most people recover new pathways around it and get to near normal. When he saw my PCR response he elected to keep me at 20mg. and not increase it. He was more concerned about myelosuppression than response rate. He told me - and this was important to me - that because I was in cytogenetic remission (CCyR; Ph+ = zero), my prognosis was excellent regardless of PCR. All he cares about PCR is that it goes down or stays the same once it does go down. Very few of his patients are PCRu.

I have been able to stay on 20mg. Sprycel since (ANC > 1.3). During this time, my PCR started to drop significantly. Cytogenetics showed no Ph+ chromosome. And the rest you know - over the next eight months, my PCR went from 55% to where it is now: 0.06%. And most important to me is that I only see a doctor every 3 months. No more weekly CBC's.

I am not out of the woods yet - since there are still some cytogenetic abnormalities in my normal cells (Ph- cells) that they want to track at next BMB. Dr. Cortes said this was normal and comes and goes - but he also said, let's just get back in there to monitor at six months (which will be 3 months from now) - he wants confirmation.

And so, in summary - I will continue to take Curcumin - it is useful for other things as well (anti-inflammatory - good for the heart) and it's relatively low cost. Also - some day if I do get to PCRu - I will test that Curcumin can keep me undetectable.


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 NotJack?

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Posted 14 February 2012 - 02:54 PM

Wonderful news!  Jack


Jack


#14 LivingWellWithCML

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Posted 14 February 2012 - 07:58 PM

Sounds good - I'm a pseudo-believer .... and I'm sipping that Cab right now, so I actually think that red wine might be helping too.  Congratulations! :-)

I've got an appointment with my CML specialist on Friday.  I'm going to ask him about it.........I'm curious to hear what he thinks (although I believe he's going to shrug it off and just tell me to keep taking Gleevec daily to get/keep CML under control).


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#15 eeyoresusieq

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Posted 15 February 2012 - 11:37 AM

how much cummurin do u take






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