Jump to content


Photo

Now...I finally 'gotta' Zero


  • Please log in to reply
21 replies to this topic

#1 scuba

scuba

    Advanced Member

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

Posted 02 December 2011 - 01:23 PM

I met with Dr. Cortes this morning at MD Anderson to review my recent lab work and progress to date.  I finally received my workup from my bone marrow aspiration taken a few weeks ago on the 11th.

There is no presence of the Ph+ chromosome in my bone marrow that they can detect cytogentically.  I went from 100% Ph+ in May to Zero as reported today.

In addition, they reported 'normal' maturation of cells.  There are still abnormalities that Dr. Cortes told me he sees all of the time as the Marrow clears out the Ph+ chromosome. He expects those to decrease or disappear as well.  In combination with my PCR dropping he said I am on my way.  I asked him about getting to PCRu and he told me that it doesn't matter.  It is the cytogentics that tells the story. He told me I might get to 0.01 or so, but as long as it stays down and I have zero bone marrow expression my prognosis is excellent.  But I pressed on the PCR = 0.000 and he again said that there is no zero.  It just gets lower and then becomes background to the normal population (Trey is going to love this one).  He said experimental work they are doing on PCR testing with  much higher sensitivities show many more false positives (i.e. bcr-abl transcripts present) giving them concern.  This is a topic for another thread.

What I want to report here to all of you is what else he told me about what they are learning about Dasatinib in particular.  He believes the 100 mg. that is the normal dose is way too high.  He starts NO ONE at 100mg.  His highest starting dose is 70mg. and then he only keeps them there if no side affects.  I was part of a large trial this past year (ended today) on side affects, dose and response rates.  And this study found that high dose = numerous side affects (no surprise), but that they are also seeing no side affects  for those patients below 40mg. They are in the workup stage on response rate and are encouraged.  Dr. Cortes has many patients (100's) on 20mg having the same response as me - some with better response.  He believes 20-40mg. of Spyrcel will prove to be very effective (and recommended) along with much less side affects.  He is preparing papers on this to be presented.

He is maintaining my dose at 20mg. and told me that if I get to PCRu and maintain it for two years (minimum), he will take me off Spyrcel and monitor me (as long as I feel comfortable with that.  Hell yeah).  What a change in view after just one year.

He also told me that although I was diagnosed in May 2010 - that as far as he is concerned, I just started meaningful therapy in the first week in May of this year when I was able to stay on therapy continuously and they could monitor the Marrow reaction.  So he said that I went from 100% Ph+ in May to zero in seven months.  That's what he likes to see.

We discussed Curcumin - and he is trying to get funding for an extensive trial.  I asked him if I should modify my Curcumin regimen and he said, "Why mess with what's working.  Keep doing what you are doing".  I told him then I will continue my wine and cigar regimen also - and he didn't want to hear about that.

Merry Christmas!


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 Skittles

Skittles

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 01:51 PM

WA HOO!!  What a wonderful Christmas gift for you and yours!!  Congrats Scuba!  I know you have had a difficult time along the way but this proves things do work out with the right drug and dose!!!  Best Ever Wishes, Skittles



#3 Dina

Dina

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 02:14 PM

Great News So Happy For You



#4 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 02:48 PM

CONGRATULATIONS, SCUBA!!! What wonderful news. I will be starting Sprycel, thank you for all the valuable information.

Judy



#5 scuba

scuba

    Advanced Member

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

Posted 02 December 2011 - 02:55 PM

Judy - What dose is your Doctor going to start you?


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 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 03:20 PM

Hi Scuba. I have no idea but after reading your post I don't want to start on anything above 40mg. The hospital is sending me a application that they filled out that I then have to send to Bristol Myers. It will tell me on that. Do the oncs figure out how much medicine you should take by your size? Would they give as much to a smaller woman as a larger one?

Judy



#7 JeffJ

JeffJ

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 03:36 PM

Hey Scuba,

Always great to hear good news. Being friday, it's even better! I will lift a Canadian whisky for you, I'm not much of a wine drinker.  Jeff



#8 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 02 December 2011 - 03:58 PM

Wow Michael, that is simply fantastic news, congratulations! :)

Thanks for sharing the info from your doctor too - very interesting.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#9 random

random

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 05:22 PM

Whaaaaaaa? CONGRATS! You're the MAN! Keep us up to date!



#10 scuba

scuba

    Advanced Member

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

Posted 02 December 2011 - 05:35 PM

Confer with your Oncologist on dose.  Let the side affects guide you.  If you don't have any - then full dose shouldn't matter.  But if you have side affects - at least there is an option to lower dose without losing effectiveness (to a point).  It seems to be working in my case.  And Dr. Cortes has hundreds of CML patients and he is quite confident in his approach.  I have confidence in him.


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 markmendonca

markmendonca

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 06:55 PM

GOD bless you



#12 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 02 December 2011 - 08:52 PM

Hi Scuba. I just took in my mail and got my application to send to Bristol Myers. My onc. is prescribing 50mg Sprycel. once a day. Do you think this is why he is saying no blood work for 30 days after I start the med. and no ekgs.? I think I'll post this under Blood Tests and Sprycel, also. Thanks.

Judy



#13 ChrisC

ChrisC

    Advanced Member

  • Members
  • PipPipPip
  • 39 posts

Posted 03 December 2011 - 01:09 AM

Bravo MIchael, may you keep up the excellent PCR testing, and may the great trend found in the PCR results blast off into oblivion

Enjoy the ride (this is your life, cigars and wine optional and sold separately)!

Screen Shot 2011-12-02 at 10.03.21 PM.png

Cigars and wine have their own side effects, too, as per the Thesaurus's definition of "Oblivion" !!

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!

 

 


#14 scuba

scuba

    Advanced Member

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

Posted 03 December 2011 - 02:15 AM

50 mg is reasonable.  I would have a CBC done at one week to see what the blood response is.  If you have a drop in counts, but above the "concern" level, I would test again in another week.  The key is to get to stable CBC.  Once you are stable, then monthly CBC is sufficient.

In my case, I have become very attuned to my response.  If I have no mouth sores and no dryness in the mouth, then I know my ANC is o.k.  I haven't had mouth sores in months.  And I have been stable for that length of time as well.  So I don't bother with CBC's on a weekly basis like I used to.  I may have one more CBC at one month since last one and if it is similar to my last one - I won't have another until my PCR is due (February sometime).

Everyone is unique.  You will find your path.


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"


#15 starlago

starlago

    New Member

  • Members
  • Pip
  • 0 posts

Posted 03 December 2011 - 10:21 AM

Michael,

I am coming up on two years in dasatinib trial at MDA (O'Brien).  My dosage is 100mg/day.  I have asked about decreased dosage due to the fact that I have responded well clinically, but do not love the side effects and worry about the longer-term effects of the drug.  So...I'm interested that Dr. Cortes is public with his "way too high" remarks and willingness to consider drug-free future and the fact that MDA is treating "100s" at lower dosage.  The answers given to me when I inquire about same are definitive,: stay on the drugs at 100 mg, they're working.  Certainly, there is the issue of sticking to the trial's protocol, but aside from that, Dr. O'Brien is pretty adamant about the 100 mg "forever."

What trial were you part of?  Why did it end?  What were/are requisite requrements to qualify?

Thanks for your help - and add my congratulations and best wishes on all the good news coming your way.



#16 scuba

scuba

    Advanced Member

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

Posted 03 December 2011 - 12:30 PM

Starlago,

Since you are part of a trial, it is unlikely you can change dose without affecting your participation in the trial.  It is interesting how the scientific community studying CML and TKI response have evolved their thinking.  Staying on therapy at all costs is being re-thought in light of using drug breaks to manage myelosuppression and dose changes.  I do want to point out for clarification that Dr. Cortes himself said nothing to me about dose.  His lab aids are the ones who told me that Dr. Cortes does not prescribe Sprycel above 70mg as a start and has many patients in the 20-40 mg range.  They summarized his findings to me.  When I met with Cortes he confirmed that high dose may not be necessary to achieve significant response and he used me as an example.  He does have 100's patients on 20-40 mg. with great results - but he does say that some have even better response and some have poorer response.  It is one big guessing game in my opinion - they try stuff to see if it works.  If it does - great, if it doesn't, they try something else.

I was part of a 'quality of life' study seeking to correlate drug dose, response and side affects.  The trial lasted exactly one year.  They will be reporting their results in upcoming publications.  Dr. Cortes' lab is very interested in side affects as well as therapeutic benefit.  The new thinking is that dose can be customized for patients where one size fits all is not necessary in order to achieve response with a good quality of life.

At the end of the day, a patient has to either trust their doctor or find someone else.  Dr. Cortes inspires confidence.  His lab operation (apart from the Fellows) have seen and done a lot in CML.  They are very matter of fact about treatment including modifying and customizing treatments to individual patients.  In his case, it helps that he has 100's of patients to hone his insight.  My primary Oncologist only had 3 CML patients (I am one) that he told me about when I was diagnosed.  He follows the 'rules', but was not upset in any way that I wanted a second opinion from an "expert".  When I told him what Dr. Cortes suggested (low dose, no stim shots, he endorsed it right away and encouraged me to follow what he recommended - even though his initial advice was for me to maintain dose and receive Neupogen. 

M.D. Anderson is a factory.  They are doing a lot of work in CML and related cancers.  I am fortunate to live in Houston where I can easily get to the facility.  They know what they are doing and they do it well.

By the way - Trey would hold his own in 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"


#17 starlago

starlago

    New Member

  • Members
  • Pip
  • 0 posts

Posted 03 December 2011 - 02:44 PM

Know you're probably right about the trial protocol, but I would certainly be interested in another trial that tests lower dosage on patients who have achieved desired response on 100mg dasatinib. 

Thanks for the additional information.  Don't know if I made it clear Dr. O'Brien and Dr. Cortes are on the same team at MDA(nderson) - why I find it so interesting the discussions you're having with them vs. the discussions I'm having with them.



#18 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 03 December 2011 - 03:04 PM

Hi Scuba. Thanks for all the great information. IT IS MUCH APPRECIATED.

Judy



#19 scuba

scuba

    Advanced Member

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

Posted 03 December 2011 - 03:57 PM

I'm sure they probably 'debate' between themselves.


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"


#20 acb

acb

    New Member

  • Members
  • Pip
  • 3 posts

Posted 05 December 2011 - 12:57 AM

Congratulations on your great results!! I am currently on 100 mg of Sprycel (since initial diagnosis in July 2010 w/WBC 149, platelets 1300, and FISH of 85.5%) but dropped significantly very quickly and have been consistently PCRU since Oct 2010. I have been asking about trying a reduction in dosage at the past few appointments, but keep being told to be PCRU for a minimum of 2 yrs. I will definitely bring up your information at my next appointment. Thank you for sharing!!

My concern is whether my body has gotten used to 100 mg and will build up a resistance/not respond to a lower dosage (or is that even possible?). I would suspect that if I started on a lower dosage from the beginning, then obviously my body would not be used to a higher dosage.

Hope you continue to get those zeros!






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users