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#41 acl

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Posted 30 April 2015 - 04:52 PM

Scuba, No I did not have a FISH test. When I had the BMB in June 2014, I asked the doctor if he was going to order a FISH test? His answer was no, and he said something about CYTOGENETICS, looks like he does not believe in the FISH test. Thank you Scuba. I am grateful to everyone who I have met here, and would be lost without you....


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#42 scuba

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Posted 30 April 2015 - 08:25 PM

Scuba, No I did not have a FISH test. When I had the BMB in June 2014, I asked the doctor if he was going to order a FISH test? His answer was no, and he said something about CYTOGENETICS, looks like he does not believe in the FISH test. Thank you Scuba. I am grateful to everyone who I have met here, and would be lost without you....

 

The BMB is equivalent to a FISH test - BMB looks at the cells as well. It's better than a peripheral blood FISH test.

What did the BMB show?


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"


#43 dougbond67

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Posted 01 May 2015 - 11:40 AM

For the record, my parents have been extremely supportive and do realize that this is "real" leukemia. I'm sorry to hear that some people's parents don't realize how serious CML can be, even now, if not treated properly and in time.

#44 jjg

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Posted 02 May 2015 - 08:10 PM

Scuba "CML is no big deal. It really isn't. We (that's all of us) are simply not going to die from this disease"

Well this might be true for you and hopefully true for me but it's certainly not true for the few members who come in here in blast crisis or who are on their way to transplant as non responders. I also have to say that even though I've responded to treatment really well, CML has changed my life and it has been a big deal.

There are a lot of people who read these threads who are not well read on CML and may not neccessarily understand where they should be with treatment. Not of them will comment but your words will become google "wisdom". I think you should desist from getting too carried away with the fact that your treatment (or lack of it) is going well.


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


#45 scuba

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Posted 03 May 2015 - 04:50 PM

Scuba "CML is no big deal. It really isn't. We (that's all of us) are simply not going to die from this disease"

Well this might be true for you and hopefully true for me but it's certainly not true for the few members who come in here in blast crisis or who are on their way to transplant as non responders. I also have to say that even though I've responded to treatment really well, CML has changed my life and it has been a big deal.

There are a lot of people who read these threads who are not well read on CML and may not neccessarily understand where they should be with treatment. Not of them will comment but your words will become google "wisdom". I think you should desist from getting too carried away with the fact that your treatment (or lack of it) is going well.

 

I damn well will get carried away that my "plan" is going well. It didn't' start out that way. I had accelerated Phase with lots of blasts, I had the pain, the fevers, the chills. I saw my wife break down in tears like I never have seen her before because of this disease. Gleevec failed to work for me - I couldn't handle the dose without severe myelosuppression. My bone marrow was a mess. A first attempt with Sprycel, nearly destroyed my Neutrophils to 0.1 (risk of sudden death) almost needing the emergency room. Only through education - on this forum for one - did I learn what I needed to do in addition to what my doctors were telling me. My first doctor was wrong. My second doctor was able to collaborate and even he is pleased with the progress.

 

I share what I have learned and applied. Others can decide what they want to do. I don't treat people as if they're stupid, "not well read". So Google "wisdom" aside - I don't give a damn that you think I should "desist" and not get carried away. 


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"


#46 dougbond67

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Posted 03 May 2015 - 06:12 PM

I think we all appreciate your input, Scuba, but I understand what JJG is saying.  CML is treatable for most patients if caught in time, now, thanks to the TKI's, but it is still leukemia, it is still cancer, and it is still a very serious disease.  I'm very happy that you are doing well, and I understand your enthusiasm as a result of what you've been through, but please keep in mind that none of us know what is going on with every other person with CML, and it's NOT appropriate to state as fact that no one will die from it.  I'm very aware of the statistics, but they are just that ... statistics.  They're not individual human beings.  Please refrain from stating things about CML that are not known quantities as facts.  I think that's all JJG was saying, and I agree with him.  Having said that, thank you for all of the information you've provided to help other CML patients with their treatment.  Your situation is clearly different than mine and probably many others, though.  I'm on Medicaid.  I can't simply walk in to my oncologist's office and demand a certain test and tell him what to do.  He'll tell me to find another doctor, which I'm working on doing, anyway, but finding another GOOD oncologist who accepts Medicaid as payment is not a walk in the park.  All I'm saying is that you don't know enough about everyone else's situation to make blanket statements.  And don't respond to me in the same manner you did to JJG.  I have CML, but I'm not someone you want to piss off.  Good day.



#47 scuba

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Posted 03 May 2015 - 06:17 PM

I think we all appreciate your input, Scuba, but I understand what JJG is saying.  CML is treatable for most patients if caught in time, now, thanks to the TKI's, but it is still leukemia, it is still cancer, and it is still a very serious disease.  I'm very happy that you are doing well, and I understand your enthusiasm as a result of what you've been through, but please keep in mind that none of us know what is going on with every other person with CML, and it's NOT appropriate to state as fact that no one will die from it.  I'm very aware of the statistics, but they are just that ... statistics.  They're not individual human beings.  Please refrain from stating things about CML that are not known quantities as facts.  I think that's all JJG was saying, and I agree with him.  Having said that, thank you for all of the information you've provided to help other CML patients with their treatment.  Your situation is clearly different than mine and probably many others, though.  I'm on Medicaid.  I can't simply walk in to my oncologist's office and demand a certain test and tell him what to do.  He'll tell me to find another doctor, which I'm working on doing, anyway, but finding another GOOD oncologist who accepts Medicaid as payment is not a walk in the park.  All I'm saying is that you don't know enough about everyone else's situation to make blanket statements.  And don't respond to me in the same manner you did to JJG.  I have CML, but I'm not someone you want to piss off.  Good day.

 

No worries. I will stop. I don't want to piss you off. CML was a serious disease. It is no longer in the sense that many options now exist that didn't before and more will come. You will be fine. Blanket statements notwithstanding.

 

To JJG. I apologize.


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"


#48 Louise1403989338

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Posted 04 May 2015 - 01:06 PM

I understand what Scuba says when he states "You are not going to die from CML".  My second oncologist tells me the same thing all the time. I really don't think this statement is meant to diminish CML - but I also think it helps people be less afraid.

 

I personally think having Scuba explain what he has gone thru, and the research he does and the time he spends on this forum explaining what he has read helps a lot of people.  I believe in the vitamin D and curcumin approach with the tki.  Personally when I got serious about these things it made me feel better. I have been able to reduce my sprycel to 20mg and although I have my days, my brain fog has definitely gone away.  I feel like my clarity and thought process on the 20 mg has really been better.

 

The first oncologist I went to handed me an envelope with some reading material on CML, it said - no kidding, you have 3-5 years to live.  She handed me all this in an envelope and I sat in my car and cried while I read it.  

 

Whether you agree with Trey, who is also so incredibly smart and helpful, or Scuba or the other cml'ers approaches, we all have to figure what works out for our own journey with cml.

 

I think people post to try to help people.  I think it is fine if you don't agree, but to attack other people on this forum really is just not nice.

 

 



#49 scuba

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Posted 04 May 2015 - 03:09 PM

I understand what Scuba says when he states "You are not going to die from CML".  My second oncologist tells me the same thing all the time. I really don't think this statement is meant to diminish CML - but I also think it helps people be less afraid.

 

I personally think having Scuba explain what he has gone thru, and the research he does and the time he spends on this forum explaining what he has read helps a lot of people.  I believe in the vitamin D and curcumin approach with the tki.  Personally when I got serious about these things it made me feel better. I have been able to reduce my sprycel to 20mg and although I have my days, my brain fog has definitely gone away.  I feel like my clarity and thought process on the 20 mg has really been better.

 

The first oncologist I went to handed me an envelope with some reading material on CML, it said - no kidding, you have 3-5 years to live.  She handed me all this in an envelope and I sat in my car and cried while I read it.  

 

Whether you agree with Trey, who is also so incredibly smart and helpful, or Scuba or the other cml'ers approaches, we all have to figure what works out for our own journey with cml.

 

I think people post to try to help people.  I think it is fine if you don't agree, but to attack other people on this forum really is just not nice.

 

Thanks Louise ... I now have benefit of hindsight to the points that JJG and Doug made above. I came on too strong to JJG which is why I apologized to him. Hopefully he will accept my apology. I thought of editing my comments to "soften" the tone - but decided to leave it as a reminder (to myself) of what not to write when you disagree strongly with someone's opinion. There is no reason for me to jump down someone's throat which was Doug's point. CML is a serious disease - my point when I wrote that "CML is no big deal" - is that I intended to include that sentiment in context with the other Leukemia's that require chemo, radiation and a host of other medications just to handle it all especially those who need stem cell transplants. I have seen these patients at M.D. Anderson and compared to what I have (what we have), we do have it much easier than they do.

 

CML blast crisis, however, is a different issue altogether when compared to chronic phase. Patients that are diagnosed in blast crisis do not have it easy and CML at that stage is certainly a big deal. I was headed that way. At diagnosis, I did not have a very high WBC in comparison to many others or an enlarged spleen that many experience just prior to diagnosis. My WBC's were modest in comparison (15,000). But my bone marrow had all kinds of dysplasia and a very high Blast count that also showed up in peripheral blood (not good). That led my first Oncologist to label me in "accelerated phase". The anemia was horrible as was the fever and other issues. There was even discussion whether I had other bone marrow disorders in addition to CML like MDS or even the beginnings of AML. At first they wanted to prescribe 600 mg Gleevec, but he decided to start me at 400 to see how I handle the drug and then go up from there. We never got to test the higher dosage - my bone marrow started to fail. It was clear to me at that point I needed to find an expert as well as learn all I can. 

 

I have shared my path with this forum in that vein of excitement from hopelessness to taking charge. I shared about Curcumin and Vitamin D based on my reading and that I do believe (just my opinion - no blanket statement) that my taking significant amounts of Curcumin interfered with the CML expansion pathways (hedgehog, NF-kB, and others) and helped enable my new drug (Sprycel) to be more effective at getting at CML. First to get it under control, and then second - deep molecular remission. My approach may not work for others - I believe it's working for me. I always had some blast cells residual in my bone marrow. Once I started vitamin D supplements to get my very low vitamin D up to high normal, my blast cells disappeared. Now this is an interesting observation point for those who are diagnosed in Blast crisis. Vitamin D may help drive blasts to differentiate and leave the blood - especially if one is deficient in vitamin D to begin with as I was very deficient.

 

"studies show that vitamin D promotes differentiation of normal hematopoietic precursors and malignant myeloblasts, which has led to significant interest in studying vitamin D analogues as treatment for myeloid malignancies, particularly myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML)." (http://www.ncbi.nlm..../PMC3725501/). 

 

Could it be just coincidence, luck or something else - perhaps. But my approach was to apply what I have learned and think what makes sense for me - to a point today where I am testing durability of remission without any Sprycel because I feel the risk of irreversible progression is near zero.

 

It may not work. Odds are probably against it - but I have already had 3 months of no drug and no progression! When Gleevec failed - I progressed within weeks - right back up to where I was at diagnosis. So I am very excited that I may be on to something.

 

Could I suddenly progress to Blast crisis and die? I don't believe the disease works that way - otherwise they would not be continuing trials involving cessation. It would have been a disaster. That fact gave me confidence to try. I do believe that Curcumin, vitamin D (and other phyto-nutrients) mess with CML - slow it down, perhaps prevent leukemic blasts from accumulating. I would never have stopped treatment after only a few months PCRU without having done what I am doing nutritionally. I also don't think I could have gotten to PCRU on such a low dose of Sprycel (20mg) without the added nutrition approach. I have come to believe that I needed to hit CML with more than just a TKI - but thankful - so thankful that TKI's are here to buy us a lot more time. 


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"


#50 Gail's

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Posted 04 May 2015 - 07:12 PM

Scuba, I think how we react to cml has a lot to do with where in our journey we are with it. I'm glad to know you can relate to our negative experiences with ineffective drugs. I'm sure you probably had a few rough times when taken off gleevec and you went back to your old numbers initially. I think my comfort level with the disease will grow with time and good response. Since you've been on this forum and on cml treatment for a long time, it would be hard to have to tell your entire story. Maybe those of us who are newer to the disease have more fear from lack of experience and need to let time bring a better comfort level. Any of us can pick and choose the advice and attitude offered here, so I say we should be free to post as optimistically or negatively as we feel. Give it a few days and my scared, negative feelings tend to pass.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#51 scuba

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Posted 04 May 2015 - 07:51 PM

Scuba, I think how we react to cml has a lot to do with where in our journey we are with it. I'm glad to know you can relate to our negative experiences with ineffective drugs. I'm sure you probably had a few rough times when taken off gleevec and you went back to your old numbers initially. I think my comfort level with the disease will grow with time and good response. Since you've been on this forum and on cml treatment for a long time, it would be hard to have to tell your entire story. Maybe those of us who are newer to the disease have more fear from lack of experience and need to let time bring a better comfort level. Any of us can pick and choose the advice and attitude offered here, so I say we should be free to post as optimistically or negatively as we feel. Give it a few days and my scared, negative feelings tend to pass.

 

Gail - you are absolutely correct. It's hard to believe I was diagnosed 5 years ago. Newly diagnosed has to be tough - but I remember how it was - and certainly how my wife felt. When I told her I was stopping therapy to test durability - it was an interesting discussion in our home. She cited Trey's comments that she read back to me. Imagine what that was like.


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"


#52 dougbond67

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Posted 05 May 2015 - 05:09 AM

I think this little detour in the conversation was worth it.  I feel good about Scuba's response and I feel as though we all have a better understanding of his and other's experiences and expectations regarding CML.  I'm glad it stayed civil, and I want to reiterate that I really do appreciate everyone's input and personal experience.  This is a journey, and I feel as though I'm not making it alone when I read this forum.  Thanks to one and all.  :)



#53 Gail's

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Posted 05 May 2015 - 05:52 PM

Ditto, Doug.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#54 Karen06410

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Posted 06 May 2015 - 07:58 AM

Hello.  I was diagnosed with CML back in February of 2014 and have been on Gleevec for the better part of that time (and still am).  It was lowering my neutrophils to unacceptable levels so my hemo-onc would take me off of it for periods of time ranging from a few weeks to over a month during that time.  Anyway, they just came back with the results of my most recent BCR-ABL test and it went from around 14% in June of 2014 to about 62% as of a week ago (April).  Needless to say, I was a bid broadsided by this, as I seemed to be responding, according my doctor, extremely well to the Gleevec (as in it worked very well in lowering my WBC count).  So much so that he ended up lowering my dosage from 400mg/day to 300mg/day as of this past December.  He's going to test me again on June 30th, and he said they would keep me on my current dosage during that time, because they didn't like to make changes in therapy based on just one test, but I was wondering if anyone else had experienced this type of result.  It seems to me that a progression from 14% to 62% within a period of less than a year is VERY BAD and would require a more aggressive approach.  Maybe it's just me, but I find my doctor's approach less than aggressive and somewhat nonchalant/lazy.  Thank you for any responses, ahead of time.  By the way, I'm a male, 5'11", 160lbs, turning 48 in June.

Hi:  I was also diagnosed with CML in May 2014.  I too am on Gleevec.  I have not been off of it since.  So far everything is ok.  I do not know my BCR-ABL levels, since my dr. never told me, and in reality I do not want to know.  But in your case you were doing well, and stated that your dr. has taken you off of the Gleevec for several periods or days.  Maybe this is why your count went up???   Your dr. probably doesn't want to increase your dose or change to another type of med., so he wants to wait until you have another blood test.  I know, I know, I hate these blood tests and waiting!!!!!  I will pray for good results for you, and for everyone here struggling with this awful disease.



#55 JPD

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Posted 07 May 2015 - 02:41 PM

What have your numbers been doing?  Are we talking a few tests in a row or just one... flatlined or actually gone up?


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#56 Trey

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Posted 07 May 2015 - 04:34 PM

TKI response plateaus are common, and I have noted that a significant number of patients here go through them.  My unscientific generalization would be they most likely start at the 9 - 18 month point, last generally for 9 - 12 months, and Tasigna seems to be the drug with the most pronounced plateaus for some reason.  But it varies by individual patient.  This information applies to patients who are in TKI response plateaus while CCyR or MMR.  Plateaus for patients who have not achieved CCyR should be treated with more caution.

 

A plateau apparently means the drug has eliminated the easier to kill lower level leukemic cells and is now working on the harder to kill higher level cells (my assessment/opinion).  It does not normally result in a U-turn.  Loss of response U-turns usually occur more quickly and have a steeper trajectory (> 1 log).  Plateaus generally hover in the 0 - 1/2 log variation range for an extended period.

 

I would add that after this early stage drug plateau a second one can happen after 18 months for some.  These can last for quite a long time.  In the original Gleevec study group some remained in a drug plateau while MMR for years before dropping into PCRU.

 

Overall a CCyR or MMR drug response plateau does not mean nothing is happening, but rather means the drug needs to work harder/longer at controlling the higher level leukemic cells.  For some reason this can take some time. 


Edited by Trey, 08 May 2015 - 05:47 PM.


#57 Trey

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Posted 07 May 2015 - 07:53 PM

You are talking in log reductions so higher numbers are better.  CCyR (-2 log) in 6 months is very good.  So if you have a plateau just before achieving MMR later this year that would still be very good.  There is nothing to worry about in those numbers.



#58 jlegakis

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Posted 08 May 2015 - 03:00 PM

Hi Folks! I was dsx,d  14 mos. ago and was on 400 mg. Gleevec for 8 mos. as my Bcr/abl came down to 79 %, BUT after 6 more mos. at a higher dose - 600 mg. I dipped to 6% and 3 mos. later my test resulted in another identical 6 %!!!! In fact, all my blood counts -WBC, HgB, and- Platelets-were also the same! So, am I  O>K>? Is this part of the progression or is it unusual? I am confused , because I expected to be at 1 % or lower, but it still is only 14 mos. since mydsx.  Any advice- HELP!



#59 scuba

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Posted 08 May 2015 - 03:44 PM

Hi Folks! I was dsx,d  14 mos. ago and was on 400 mg. Gleevec for 8 mos. as my Bcr/abl came down to 79 %, BUT after 6 more mos. at a higher dose - 600 mg. I dipped to 6% and 3 mos. later my test resulted in another identical 6 %!!!! In fact, all my blood counts -WBC, HgB, and- Platelets-were also the same! So, am I  O>K>? Is this part of the progression or is it unusual? I am confused , because I expected to be at 1 % or lower, but it still is only 14 mos. since mydsx.  Any advice- HELP!

 

Are you also having a FISH test taken which shows whether they see any CML cells under the microscope? That would be a very important indicator. Holding at 6% bcr-abl while on an increased dose of 600mg Gleevec may indicate a plateau response that is not satisfactory. This would especially be true if you have not achieved a complete cytogenetic response yet. You should discuss this with your doctor and inquire about switching drugs to drive MR quicker and depper. It may be nothing to be alarmed about, but vigilance is best. Don't wait another 3 months.

 

The article linked below is a good summary of what you should reasonably expect along with additional information:

 

http://asheducationb...2013/1/168.full

 

(Trey should read this also, but for a different reason. )


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"


#60 Trey

Trey

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Posted 08 May 2015 - 05:43 PM

Jl,

You said all numbers were the same.  The first thing I would do is double check the dates on the lab reports to make sure they are not the same report given to you a second time by mistake.  Doubtful, but not impossible.

 

You got off to a slow start, but apparently the increased dosage helped to some degree.  Because of that you should base your assessment of response from the time you increased dosage.  The drop from the first PCR to the second after increased dosage was an additional 1 log reduction, which shows you are responding to Gleevec even though not quickly.  A FISH test would confirm whether you are CCyR, so that would be recommended, and I would also repeat the PCR now.

 

While there is no compelling reason to switch drugs right away, there is also no reason not to switch if you wish.  It is a matter of personal choice based on patient issues such as side effects, other specific health concerns, insurance, etc.  But if you don't drop to CCyR soon a drug change would be a very good idea since your response to Gleevec has been rather slow.

 

When I talk about drug response plateaus, it is usually within the context of being CCyR or better.  Plateaus above CCyR should be treated with more caution.






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