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long term TKI use


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#21 jjg

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Posted 19 July 2016 - 08:17 PM

Hey Frogie how long is your washout going to be and do you have a plan for if you don't get pregnant first cycle?

We had a two week washout but we were "fully IVF" transferring a donor embryo that had no previous TKI exposure. We were soooo lucky to get pregnant first go this time (as opposed to 2012 with my eggs when it never happened) but if pregnancy hadn't happened I was going back on tasigna for a month or so and then try again.... pause to change dirty nappy...somebody had avocado for the first time yesterday... wondering if definition of insanity is going through all this with the reward of cleaning up green poop :-)

I found that once we stopped treatment I was quite calm. Not the nothing is going to go wrong cos I take vitamins kinda calm but the this is a reasonable risk and we have a plan kinda calm. The most important time to be off TKIs for the baby is early in the pregnancy when the organs are forming. If your numbers rise you try interferon with gleevec later in the pregnancy as a reasonable fall back to keep you safe.

Have you talked through what will happen if your numbers rise with your doc? Do you know that you can get hold of a TKI, preferably gleevec during pregnancy if required (possibly more of an issue in Australia)? When my numbers rose significantly and I lost MMR at 10 weeks my doc assumed I'd be panicked and wanted to reassure me, but I wasn't panicked because we had already discussed what would happen and I'd accepted it before we got started. There is also a good chance that your numbers will stay PCRU or rise slowly


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#22 rct

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Posted 20 July 2016 - 07:57 AM

I don't think anyone is diagnosing and treating here.

 

"You are NOT going to lose your life to CML."

 

People do, every day, people my Mrs and I have known over ten plus years of doing this, people our doctors have known and tried to help.

 

"Of course I do take Curcumin and maintain higher than normal vitamin D status. "

 

I repeat:  Those two things taken daily measured in pounds do absolutely nothing for CML, or nobody would have it.

 

If those two sentences don't constitute some form of medical advice, knowledge, or treatment ideas I don't know what does.

 

My Mrs, and literally TENS OF THOUSANDS just like here can eat nothing but curcumin and vitamin D capsules and you know what will happen without one of the TKIs?  She, and they, will lose their lives.

 

We are very happy that there are people for whom this is no more than an interruption of their daily workout and happy hour.  For the vast majority it is far more, and dismissive, minimizing talk does nobody any good.

 

We, Mrs and I, are over ten year survivors of this, probably closer to 15 years since they didn't catch it at all.  She could be a vastly valuable resource, metric tonnes of experience with how this whole thing works.  Like many many others like her, she doesn't come here, or the Canadian one, or any of the other gathering places there have been.  Most of the people in these places are having a great time of it.  It's false.  It isn't reality for most people doing this, and I personally think it is a major disservice to people like SusanL, ten years on these drugs, in new territory for everybody, wondering when the other shoe is going to drop.

 

I really apologize for pooping on yer party here, but it just gets so tiresome that the entire forum has been streamlined down to only those that actually feel like looking at their computer for a while are the ones that come here.  Most, by far, 99% of those with CML don't.  It isn't easy at all.  It's why some come here for a few posts, realize they are in the vast minority of the huge majority, and then they are gone.

 

I wish you all the best, and when all of you are at it for ten years or so you might just be as p1ssed off about it all as we are.

 

rct



#23 scuba

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Posted 20 July 2016 - 09:13 AM

" "You are NOT going to lose your life to CML."

 

People do, every day, people my Mrs and I have known over ten plus years of doing this, people our doctors have known and tried to help.

 

"Of course I do take Curcumin and maintain higher than normal vitamin D status. "

 

I repeat:  Those two things taken daily measured in pounds do absolutely nothing for CML, or nobody would have it.

 

If those two sentences don't constitute some form of medical advice, knowledge, or treatment ideas I don't know what does."

 

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

 

It's so hard sometimes to be "understood" - but I'll try again.

 

1. You are not going to die or lose you life to CML is directed to Froggiegirl - period. Scaring her is wrong. The statistics are crystal clear about people in PCRU not dying from CML. My own doctor - told me exactly that. In fact, he said that patients who achieve CCyR are not going to die from CML either. I choose to see the sunny side of the street rather than see only the negative. Which is why I worked hard at learning as much as I can about this disease and beating it. 

 

2. I take Curcumin and maintain high normal vitamin D status. That's not medical advice. It's what I do. I share ... on this forum because by sharing all can decide for themselves - because they have brains - what's in their best interest. Look how many doctors give terrible advice to their patients! I trust what Trey has to say more than I do run of the mill oncologists. Regarding Curcumin and vitamin D specifically - I NEVER SAID THEY ARE A CURE - EVER. But there is lots of data and evidence that Curcumin interferes with the pathways necessary for CML to thrive. And Vitamin D, they have learned, is vital to immune health. And Cancer is a failure of the immune system.

 

I share what I have learned and experienced - that's it. My God - I was diagnosed at borderline accelerated, my bone marrow was a mess and my wife cried like I never saw her cry when I was sick and they told her I had CML. No need to tell me how bad this disease is ... but I read and read and tried different things. For me - it's working.

 

And now - 20mg Sprycel - one fifth the normal dose - no side effects that I feel, and I am easily at or near PCRU. 

 

Sorry, RCT, I celebrate that. I even went off the drug for nine months testing response and it moved slightly during that time, not even a log, still in MMR. When I had to stop Gleevec early after my diagnosis, my CML came roaring back - in weeks!  I believe - not scientific - but I believe that Curcumin and other things I am doing is helping me maintain excellent response - before I did these things, I couldn't handle the TKI's as well as get the response I needed.

 

So I shared my 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"


#24 Frogiegirl

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Posted 20 July 2016 - 09:46 AM

Hi jjg. When I do decide my doc wants me off tasigna for two weeks and then try. Time it just right around ovulation. I would have to do pcr/ able testing monthly. Before cml I was a fertile murtle. I'm hoping I can get it on the first try;) I feel fully committed to this I just don't know the best time to jump. ....what I wouldn't give to change my babies green poopy diaper lol. Scoobs I do have to admit I've been off all my vitamins for over 3 weeks and I've never felt worse. I'm sleeping even more if that's possible. ....I'll be sorting my vitamins into the pill box asap. They Def help me. Jjg my doc always says we will cross that bridge when we get there, but I would prefer a plan so I to can stay calm. Especially with my high anxiety.

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.


#25 rct

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Posted 20 July 2016 - 10:05 AM

 

 

I share what I have learned and experienced - that's it.

 

 

Me too.

 

rct



#26 Trey

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Posted 20 July 2016 - 02:02 PM

The statistics are crystal clear about people in PCRU not dying from CML. My own doctor - told me exactly that. In fact, he said that patients who achieve CCyR are not going to die from CML either.

 

That assumes the person continues to take the TKI. 

 

This all reminds me of the post a women started on the former L&LS site many years ago titled: "Need Help -- Wanting to Get Pregnant".  Good thing there were no "warning points" back in those days. 



#27 Frogiegirl

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Posted 20 July 2016 - 02:39 PM

Trey do you recall if she went through with a pregnancy?

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.


#28 Trey

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Posted 20 July 2016 - 08:26 PM

I don't recall who it was.  But I do recall how she titled the post.

 

"Trying to have it all usually results in having less of something."

-- Trey



#29 r06ue1

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Posted 21 July 2016 - 12:47 PM

I was curious about the statistics, apparently there are people who will die of CML, an estimated 1070 in 2016 (of course these numbers include patients diagnosed in accelerated and blast crisis):  

 

http://seer.cancer.g.../html/cmyl.html

 

But I do agree with Scuba also, if you reach MMR or better and you take your medicine every day, the likelihood of you dying is probably very low.  Wish I could find some numbers on it but I did find this little quote from an article in 2013:  

 

 

 

patients who were in MMR at 24 months had 5 years probability of overall survival of 99%

 

http://www.bloodjour...so-checked=true

 

Also found a quote from Dr. Druker on the matter:  

 

 

 

DR. DRUKER: As I indicated, certainly somebody who reaches the major molecular response
or that 3-log reduction, their risk of disease progression at five years to
accelerated phase or blast crisis is zero. So you can almost immediately take a deep breath of relief.

 

http://www.cmlsuppor...ogression-rates

 

Not to scare anyone with the first numbers but there still are people who die from CML but with all of the drugs out there currently and all of the trials going on with immunotherapy and possible a possible cure, I just see brighter futures for us all including those diagnosed in accelerated or blast crisis.


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


#30 thatguy

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Posted 21 July 2016 - 01:31 PM

Yeah, if you Google various phrases like "EFS cml statistics", "PFS cml statistics", "significance MMR cml", "significance CCyR cml", "time to progression cml", "EFS imatinib", "EFS dasatinib", "life expectancy cml 2016" , ETC, and filter images, you can see all kinds of graphs and comment on the matters. There are unfortunately those of us who are the unlucky, of the unlucky- still.

 

Hopefully more successful drugs for resistance and these advanced phases, arrive.


3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#31 scuba

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Posted 21 July 2016 - 03:33 PM

Peter Druker  comments that those of us who are in MMR or better have "zero" chance of progression as highlighted above. And that was certainly my point earlier for Jessica (Froggiegirl). Trey pointed that that may indeed be true for continual TKI use while in PCRU, but for someone wanting to stop treatment even temporarily - that could open the door to progression - in which case the risk is no longer zero. My point is that even with TKI stopping, any CML expansion that may begin would be very slow (when starting from PCRU) and can take many many months in chronic phase to grow. One does not just go from PCRU, strop treatment and then blast crisis in a month. In Jessica's case, she would be monitored monthly to catch any CML expansion.

 

The question remains, however, could she progress to blast crisis following PCRU TKI cessation in such a short time without it getting caught in within one month's time.  There is no research that I know of which shows this to have happened.

 

In addition, I do believe that wise nutritional support during TKI cessation can limit CML expansion rate if it occurs. There is much data to support this - and some of it early before the TKI era. Here is but one example citing a summary of the literature at that time (2002):

 

http://www.altmedrev...ons/7/5/404.pdf

 

And yes - the article does detail Curcumin and vitamin D. 

 

from the article:

 

"Two articles by Sokoloski et al discuss the differentiation of leukemic cells by antioxidants and anti-inflammatory agents, including vitamin E and curcumin. Vitamin E has been found to enhance leukemic cell differentiation in the presence of low levels of 1,25 (OH)2 D3.16 Based on this information the research examined curcumin. Alone it had no effect but when combined with vitamin D3 it significantly enhanced expression of markers of cell differentiation. Curcumin with vitamin D3 appear to exert their effects by inhibition of transcription factor NF-kappa B, an effect that as been found to enhance leukemic cell differentiation.16,17"

 

This is why I take both Curcumin and Vitamin D3 (which converts to vitamin D in the body). It's more of an insurance policy - not a cure, just taking advantage of what research has shown to limit CML. And - the two nutrients are good for you for other reasons regardless

 

One additional point. I always had blast cells during my blood test even when I achieved CCyR....until I raised my vitamin D level. Once my vitamin D level went over 50ng/ml, blasts in my CBC tests went to zero. They have been zero ever since. Vitamin D is, in fact, needed to drive cellular differentiation (later papers confirm this):

 

http://www.ncbi.nlm....pubmed/18844838

http://www.ncbi.nlm....pubmed/19650715

 

There is research underway right now to examine how this may be useful in clinical practice. 


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"


#32 Trey

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Posted 21 July 2016 - 08:55 PM

Peter Druker  comments that those of us who are in MMR or better have "zero" chance of progression as highlighted above.

Peter Drucker says: "There is nothing so useless as doing efficiently that which should not be done at all."  That is because he is a management guru.

 

Brian Druker says: "We turned a disease with a 3- to 5-year life expectancy into a manageable condition, with most patients now expected to live a normal lifespan, taking a daily pill."  That is because he is a CML guru.



#33 scuba

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Posted 22 July 2016 - 05:21 AM

Peter Drucker says: "There is nothing so useless as doing efficiently that which should not be done at all."  That is because he is a management guru.

 

Brian Druker says: "We turned a disease with a 3- to 5-year life expectancy into a manageable condition, with most patients now expected to live a normal lifespan, taking a daily pill."  That is because he is a CML guru.

 

Excellent !!

 

(Good catch - I did mean to write Brian Drucker!! - but Peter Drucker is spot on as well!)

 

Another Peter Drucker quote:

 

"Knowledge has to be improved, challenged, and increased constantly, or it vanishes."


Edited by scuba, 22 July 2016 - 08:07 AM.

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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