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Week 13 - No TKI


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#1 scuba

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Posted 28 April 2011 - 09:22 AM

I'm back ... My wife and I took a cruise on the Queen Mary 2 during the last 10 days from Southampton to New York.  We left the same dock that the Titanic left and we 'sailed' over the same spot where the Titanic sank.  It was a wild trip.  North Atlantic - 20 foot seas - and a lot of dancing.  The food was over the top, but thankfully the dancing and walking 12 flights of stairs kept my weight from shooting up.

And most important - NO TKI.  I was able to enjoy the trip without thinking about CML.  The dancing hurts though.  A lot of muscles are used to stay upright with a moving boat.  And we closed down the night club at 3:00 a.m. (jet lag helped here coming from the states) with a bit faster dancing.

And after several weeks of not seeing any doctor, I went in for my 13th week CBC checkup:

ANC = 0.91 (back up from 0.7 drop two weeks ago).  All other values normal.  Platelets = 209.  And overall WBC = 2.6.

I can no longer explain the levels.  The CML without any TKI whatsoever for over 3 months, has not done a thing.  It is not growing.  M.D. Anderson wants to do a BMB tomorrow - my third in one year if I go through with it because they are curious. 

My only possible explanation is Curcumin.  I take 500 mg. every day.  And if it is keeping the CML in check - then that's fine with me.  I want 1560 weeks with no TKI !


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 hannibellemo

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Posted 28 April 2011 - 07:22 PM

Michael,

I hope all your wishes come true!

Sounds like you and your wife had a fantastic time! You should post photos, I'd love to see you dancing in 20 ft. seas!

Pat


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"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>


#3 Lynne D

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Posted 28 April 2011 - 08:52 PM

I am very curious at what stage you were diagnosed with CML and how long have you had it? I have been on it for 6 years, I hate the way it makes me feel. I tried Tasigna and suffered through that for 3 months, then had a 7 day drug holiday and my wbc went from 4,000 to 14,000 in a week. I am curious if it has anything to do with how sick we are when diagnosed, I was very very sick. Curious, thanks.


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"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#4 scuba

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Posted 29 April 2011 - 07:25 AM

I was diagnosed in mid-May of last year - almost a year ago.  My WBC's were 38,000.   I was having persistent low grade fever and heart anomolies that persisted for several weeks.  At first my wife scheduled me for a cardiologist thinking heart problems.  The cardiologist, to his credit, told me that my heart as far as he can tell is fine and that before he does anything else I need to see a hematologist/Oncologist to check out my blood.  My blood came back with the 38,000 WBC and positive for CML (PH+) at 155% PCR and 55% FISH (strange when I look back on it:  FISH was never 100%, but PCR was very high).

I was put on 400 mg. Gleevec which dropped my WBC's to normal within two weeks and cut the fever out completely in 24-48 hours.  I have never had a fever since.  Over 4 months I stayed on Gleevec and my counts slowly dropped and kept dropping until I went into mild myelosuppression and Gleevec was suspended.  During that time, my PCR counts dropped a little bit and my FISH went from 55% (it was never 100%) to about 40%.  Not much change, but ANC went below 0.5.  I went off Gleevec for 3 weeks after which time my counts became normal.  I was re-started on Gleevec at 300 mg. and within another month it dropped again.  At this point they stopped Gleevec and did a bone marrow.  My cytogenetic report showed 100% PH+ and 45% PCR.  Gleevec was termed failure by January of this year.  My counts recovered over a couple of weeks.

I was switched to Sprycel in January and in only two weeks, my counts plummeted to 0.1 ANC (dangerously low).  Rather than "stimulate" my white cells, Dr. Cortes wanted me to wait and let recovery occur naturally over a few weeks and then I go back on again.  It was a pulsing strategy..  And this is when it became strange.  My recovery was very very slow to this day - and at the same time my FISH levels kept dropping and my PCR has dropped as well without any TKI.  From January until now, I went from 45% FISH to Zero.  And my PCR went from 45% or so (international scale) to less than 35% today without any medication whatsoever.  I am still not in the normal range for WBC's and am still mildly myelosuppressed, but continue to rise slowly.

I go for a bone marrow at M.D. Anderson later this morning.  The only explanation they have is that my body was already fighting the Leukemia naturally (hence no 100% FISH at diagnosis) and that the WBC's were starting to get the uppe hand (the balance was shifting to the CML).  Sprycel did a major number on the Leukemia - enough to enable my body to keep it in a steady state condition more or less. It's not getting worse, its not getting better.  It's just there ... low enough not to show symptoms.  I feel normal and fine.  I have no doubt that I am only in a quiescent phase and that I could last this way for years.  They don't know.  But I do believe that if I can get back on Sprycel - it will drop my PCR levels fast.   My bone marrow should tell the story.


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"


#5 valiantchong

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Posted 29 April 2011 - 08:13 AM

Hi Mic,

From your discussion, you said you could last for years without medication this way, was this doc opinion ?



#6 scuba

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Posted 29 April 2011 - 09:19 AM

This is my opinion - not any Doctor's opinion.  So far I have been medication free for over 3 months without any disease progress.  They want to understand why I am not progressing without a TKI present.  I was told that I am outside the norm and that usually their patients quickly start to relapse within just a few weeks after TKI interuption.  They believe the bone marrow will be revealing.

It is my "Personal" opinion that Curcumin is keeping the CML at bay.  I believe it is causing CML cells to enter Apoptosis and allowing my normal system to recover and re-populate my system.  I have no other explanation.  Trey may have insights here that is more data driven.

I am researching Doctors - including at M.D. Anderson (Dr. Bharat B. Aggarwal) who are looking at Curcumin to learn more. 


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 Skittles

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Posted 29 April 2011 - 10:13 AM

Michael,  I hope your BMB shows only good news.  Your post is been very interesting and I hope Trey does respond to this as well as anything he might know about the use of Curcumin.   Here's hoping you are able to remain off TKI's!  Thank you for keeping us updated.  Skittles



#8 scuba

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Posted 29 April 2011 - 10:21 AM

I don't believe I will be able to stay off a TKI, but I do believe that I won't need the maximum dose (less side affects) and that I may not need to take it all of the time.  As the science evolves in the absense of a cure, my case helps them in learning what to do that is flexible and beneficial to a patient. 

It was clear early on that I should have been "stimulated" - but Dr. Cortes deviated from that plan to try an approach of "do nothing".  And it seems to have worked.  It mostly worked in providing me with a quality of life that did not compromise my treatment.  I believe there is growing evidence that mutations are not caused by lack of TKI.  So having to stay on it all fo the time, every day may not be necessary to control the disease and keep one healthy.  In many ways, we do have a Chronic disease like Diabetes.  Some of us in any event.

I have CML.  I am living with it.  And the only difference is that I have to monitor it so that I can keep it treated.  Right now - my body is handling it (perhaps with Curcumin's help).  I expect that I will need Sprycel down the road to knock it down again.  But what excites me - is that I may be able to take Sprycel for a short time (weeks) and get months of normalcy.  Hopefully this strategy will work long enough until they find a cure that attacks the CML stem cells and banishes the PH+ chromosome from the body.


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"


#9 Skittles

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Posted 29 April 2011 - 10:41 AM

Intermittent TKI therapy would be a good thing too and you are helping in the study of that treatment option.  Most of us have to stay on TKI therapy daily and that is ok too.  That being said I am still in hopes all will be ok with you for quite sometime without TKI's.  It is so interesting to see what the medical community is doing as far as research for CML.  I know that intermittent therapy was also looked at for folks over 65.  I recently saw Dr. Druker and he said that he feels a cure would not come from a one drug therapy treatment.  Perhaps Curcumin will play a role in blood cancers more than we know.  Interesting stuff Michael!  Skittles



#10 CallMeLucky

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Posted 29 April 2011 - 12:58 PM

I'll be interested to see how the effects go with low dosage, unfortunately it does not seem to be a one to one relationship where lower drug means less side effect.  I have read posts from some people on low dose TKI who still have bad side effects and others on higher dosage with minimal side effects.  I think it all has to do with how your body adapts to the targeted proteins being shut down and how it works around it. (probably a lot more to it than that too).

Also will be interesting to see how the theory of pulse therapy plays out.  I have spoken to a couple of CML experts and gotten mixed thoughts on it.  Some seem to think you don't give this thing an inch to breath, you pummel it down and keep hitting it, never stopping.  Others seem ok with the idea of low level disease being out there and just keeping it under control so it doesn't proliferate.  The big unknown is whether or not the disease could mutate and if giving it that wiggle room would allow it.  The theories are interesting.  Dr. Mauro said something along the lines of how mutations are like Darwinian evolution, so larger colonies will learn to adapt better.  I took that to mean that smaller colonies (i.e. minimum residual disease) is less likely to mutate, but I think it is hard to figure out how small is small and it likely differs in every individual.

Glad to hear you are doing well.  Keep us up to date on your adventures!


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%
 

 


#11 scuba

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Posted 29 April 2011 - 01:53 PM

Bone Aspirate was taken today.  I'll know more in 10 days or so.

Dr. Cortes was very confident on the waiting program so far.  He had no concern whatsoever when I asked him about mutations vs stimulating the Cancer with Neupogen.  He was more concerned about stimulating the cancer.  In my case - three months with zero change - in fact - a decrease in CML counts without TKI pressure was indeed a surprise.  Trey refers to the lack of growth as "regrouping".  I suspect it is just a dynamic between Tyrosine Kinase signaling and cell apoptosis.  Something is either causing the CML cells to die off (Curcumin) or not to grow (quiescence).  We don't know which.

I agree with the idea of hitting the CML until there is none measureable.  But I am also  willing to stop hitting it when that level is achieved to see what happens.  To some degree, I have already been a guinea pig for that experiement albeit forced.

I watch those platelets!  As long as they stay level - I feel I am somewhat steady state.  They are the one's to pop first when cell division run amok starts to happen as did occur when I stopped Gleevec.  In my case that is ... I'm sure it is different for others.


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"


#12 Trey

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Posted 29 April 2011 - 04:32 PM

You were diagnosed with a low WBC, so the CML was caught fairly early.  It can  take a while for the CML to build up momentum, and during early stages it can  advance very slowly.  But I would be mentally prepared for a high BMB leukemic cell count.  Low WBC blood counts do not tell the story.  Granted, your last FISH was zero, but that is the only non-sequitur in the story, and could be a lab error, especially considering your PCR result at the same time was high.  Otherwise your CML was progressing during 2010 and your body was not fighting it off by itself, even with the help of Gleevec.  This was shown by your last BMB only a few months ago, which was 100% leukemic positive.  Sprycel may have knocked that back a bit during early 2011, but being off TKIs now for so long will have a negative effect even if the WBC remains low for a while (during what I have referred to as the CML "re-grouping", for lack of a better term).  Having said that, there is the curcumin variable, and I would love to see it working against CML, but I highly doubt is having much impact, especially alone.

Also, next time you talk with Dr Cortes, would you ask him to explain what your PCR means in log reduction terms?  I would think that might be useful data.  And ask if the FISH might not work in some unusual cases, such as alternate breakpoints or sub-mutations in the Philadelphia Chromosome (Ph1), or if FISH is unrelaiable during severe myelosuppression.  Do you know what Ph1 breakpoint you have?

I still hope I am wrong and that you are a true wunderkind.



#13 Susan61

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Posted 29 April 2011 - 06:10 PM

Hi Michael:  I know your looking for a miracle to get off these drugs, and be cured.  I keep trying to follow what is going on.  I do not understand all the technical terms even after all my years of having CML. I did read about Curcumin, not related to CML.  I just want anyone who is thinking of taking it, not to use it if they are on a blood thinner.  I do not remember what or where this article was, or what this person was using it for.  I always say you have to be careful with all these things that they seem to think works wonders. I just know they said do not take with a blood thinner like Coumadin.  I was not thinking of taking it, but I am on Coumadin now for that blood clot in my leg.

      I can remember reading years ago about them finding that Feverfew was killing the root of the CML in testing, but it never came into anything being able to be used that I know of.

     I do wish you well, and I hope you continue to feel great.   You know me, I will keep taking my Gleevec as long as its working.  Anxious to see your results when you post them.  Take Care and God Bless

Susan



#14 scuba

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Posted 30 April 2011 - 06:55 AM

Trey - All good points.  I will ask about the breakpoints.  I don't know if that has been reported on any of my labs.

Dr. Cortes repeated that I am an unusual case.  And just from what I have read here and what he has said - when a patient stops treatment, CML progresses much faster (sort of recover lost ground for lack of a better expression) and cell counts pop upward.  We saw that with the platelet count when I stopped Gleevec followed very quicly with WBC's and especially Neutrophils.  So something different is going on here.  I suspect Curcumin may be the variable - and I am reluctant to stop taking it in order to test the theory.  After 3 months of zero growth - that is good.

I do suspect - and am prepared for a high leukemic bone marrow count.  It was, after all, 100% at last BMB - but my FISH at that time was high as well.  So we'll see.  I was told that they will have my BM results back early next week on request of Dr. Cortes.  Usually this takes 10 days.  He's curious and accelerated the analysis.  I am curious too.

With Respect to PCR - it is reported using the International scale using a control gene.  Log reduction doesn't mean much right now.  I am greater than 1% so essentially no change since last year.  Whatever CML cells I have, although maybe low in number, they are pumping out Transcripts sufficient for detection.  What's odd is that the transcripts are not causing a cell response (uncontrolled growth) via Tyrosine Kinase.  Supposedly there is no Tyrosine Kinase inhibition.  Or maybe there is inhibition going on from some other mechanism.  We dont' know.

But I do believe that sooner or later the CML will "re-group".  And so I do desire to get back on Sprycel.  But only when my Neutrophils are at a sufficient level.  I do not want to go through myelosuppression again.  That was an unsettling episode.


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 scuba

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Posted 30 April 2011 - 07:28 AM

Hi Susan,

I don't take any blood thinners except an occasional Aspirin for an occasional 'wine headache'.  The Curcumin has a lot of data accumulating on its affect on the protein pathways (membrane) unique to some cancer cells especially CML cells.  It apparently causes apoptosis.  I take 500 mg. a day.  1/3 the so-called recommended dose for CML.  Curcumin is naturally occurring and a common ingredient in sub-continent Indian spices (curry).  I take Curcumin the way Trey takes his vitamin C, a multi-vitamin and in the early days of his CML, B12.  I take Curcumin in that vein.  Not a cure, just a CML support.  It can't hurt and may just help.  If my Bone marrow shows a marked reduction in CML, I intend to increase my dose to full level (1500 mg daily) and then track PCR over the next 3 months.

Now ... if the Curcumin is the reason why my CML has stopped progressing in the absence of a TKI - then I am perfectly O.k. with that.  I do not ever expect to be cured of CML - even when they 'discover' a cure.  As you know, I believe we are pre-disposed due to our genetic make-up and environment to get CML.  So even if I was "cured" - and had 100% leukemic stem and pregeny cell eradication, I believe we still can have spontaneious translocaton of a normal cell and subsequently  kick-off CML all over again.  And since our bodies couldn't stop it the first time, we probably couldn't stop it the second time.  In other words, a true cure has to come from some immunity defense that is long lasting and fights CML as it occurs - not just a one time eradication.  There is something in normal people that kills CML cells when the translocation occurs.  Translocation happens naturally in our other cell lines.  Most are benign ... And our bodies recognize and kill it.  But in our case - we don't recognize the translocated cells and over time, the numbers accumulate until PCR detects it or we have symptoms.  Full blown CML.  We need something to help our bodies recognize only the CML cells and kill them.

And that's why I like Curcumin.  It is low cost and has no side affects because it doesn't interfere with intra-cellular function.  Curcumin works on the outside of the cell on its membrane.  Curcumin works at the protein pathway on the cell membrane unique to CML cells (and other cancer cells as well apparently colon cancer for one).  It causes CML cells to die on their own.  Perhaps  (at the dose I take) that just may enable me to live with CML.  CML is there, but doesn't grow.  The cells die off like they are suppose to do if they were normal.

It's interesting how little research is done that involves "cheap" non-pharmaceutical solutions.  After all - Gleevec, Tasigna, Sprycel and the newer drugs are a BILLION DOLLAR industry.  Hmmm.  And the doctors are all connected to big-pharma for grants, stipends and other compensation.  I am not making ANY claims here, but humans are humans - whether they have Dr. in front of their name or not.  They follow the money.  There is no incentive except altruism and passion to investigate non-money making solutions to medical problems.  One researcher, Dr. Bharat B. Aggarwal at M.D. Anderson is doing research with Curcumin and cancer.  I suspect he has zero funding from a pharmaceutical company to research this compound.  This is certainly where government can play a role to help fund non-money making solutions.  Perhaps Curcumin + TKI may have a better result for some.  We don't know.  I was warned to be careful taking anything once I start a TKI.  Curcumin could enhance the toxicity of a TKI.  We don't know.  They don't know.  So when I restart Sprycel, I will have to be careful.

So as they say on the extreme stunt events on TV - the stunts you see on TV are done by professionals, do not try this at home.  I am a CML professonal.  I'll take the risk and trust my own intelligence, common sense and what Trey says.


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"


#16 Susan61

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Posted 30 April 2011 - 05:11 PM

I have to say that you do your homework on every angle of your health.  I do wish you well, and everyone is waiting to see how you continue to do.

Like I said, I am not good with all the differerent terms.  I just keep track of what I do know.  I do like to read all that you and Trey write, even if I only absorb parts of it.  Thats why I always ask questions when I get stumped on something.

Enjoy Your Weekend

Susan



#17 Guest_billronm_*

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Posted 30 April 2011 - 09:54 PM

Dear Michael,

Welcome Back,

Aren't cruises a blast!  I'm glad you had a good time. I would love to go on another one But all I would do is sleep for 10 days, and I guess my tanning days are over. I spent most of my time on the ship getting lost. And I know if I needed to use the head all I would find would be the tail. That would not be good.

Congratulations on still doing so well. Remember I keep saying we knew you first. Now if you could cure the common cold I would put you in my will.There's nothing in it but I'll put you in it anyway. I feel like crap. I'm always moaning and complaining about cml I forgot how miserable a stupid cold can be.

                                                                               Take Care keep us updated Billie

PS why do they call it the head? obviously they didn't know about cml in the olden days.






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