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Disappointing Fish & PCR results


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#1 Melanie

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Posted 16 August 2012 - 12:21 PM

Results: Fish

5/2012 - 2.2% (IS)

8/2012 - 17.2% (IS)  both done on 500 cells

PCR -

6/2012 - .006

8/2012 - 2.350 - also stated P190 BCR-ABL1 not detected; P210 BCR-ABL1 detected. Not sure what that means...

Dr says current treatment is not working and is calling my Dr (transplant specialist) at the Mayo Clinic to discuss options. My current treatment is 150 mg of T once a day, reduced to this level due to low RBC, PLT, and ANC.  PLT sre now back to low normal, but RBC still low and ANC steady at .8 maintained there by nuepogen shots. Dr says we need a new long term plan. That keeping enough drug in me to fight the disease cause my blood counts to tank and they don't recover without transfusions and shots as maintenance. Decreasing the drug causes the above results. What to do? Therefore he's talking to transplant specialist again, where I've already been typed. He sees the clock ticking with my age (57) and numbers going up. He's wondering if maybe Mayo has access for Ponotnib (sp) as another option or to maybe proceed with transplant. Does anyone have any thoughts on this? I'm still processing... Thinking about seeking a true CML specialist just for any last ideas before considering SCT. I'm in Tucson, AZ, but am thinking of making the trip to MD Anderson. Any suggestions? I'm at a loss.


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#2 CallMeLucky

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Posted 16 August 2012 - 02:21 PM

Sorry your results are not what you were looking for, 150mg of T a day is very low, so the upside to this at least for now is that your trending up because you don't have enough drug in you opposed to it going up due to resistance or mutation.

My advice would be to go to MD Anderson in Houston and see Cortes.  Consider low dose Sprycel again, maybe start at 20mg and try to work way up.  Explore option of Ponatinib or even Bosutinb (who knows maybe it won't have such a harsh side effect on your counts).  I would hold off on transplant until all other options have been explored.

Wishing you the best....


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%
 

 


#3 Melanie

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Posted 16 August 2012 - 05:31 PM

Thanks Lucky, those are my thoughts too. I'm leaning towards trying to see Cortes at MDA...not sure how to make all the arrangements. I'm not ready to consider SCT while there's still other TKI options. I guess the real question is how long do you wait trying to find a long term treatment, praying the disease doesn't escalate, all the while getting older and the risk getting higher for a transplant? It's just crazy!


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#4 Susan61

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Posted 16 August 2012 - 06:39 PM

HI:  I wish you the best in finding another treatment that will work for you.  I would go see Dr. Cortes also, and get his opinion.  Doctors are not jumping to SCT so quickly anymore with all these other options to try first.

You said your praying that the disease does not escalate.  I pray for everyone every night.  What better medicine can you get than that.  Keep us informed of how you do.  We worry as we get older about where we will be going with this disease, and the younger people are anxious for a cure so they do not have to worry about  how they will fight this disease in later years.  I think you will feel better once you go to MD Anderson, and talk to a specialist.

Susan



#5 mariebow

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Posted 16 August 2012 - 06:52 PM

  I am still new in treatment aslo, but I would go to Dr Cortez if things are not better.



#6 Trey

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Posted 16 August 2012 - 07:20 PM

You need to be on a level of drug that works against the leukemia and take shots and/or get transfusions if needed.  The cell stim shots and transfusions may be necessary for a while, and trying to avoid these should not drive your treatment if you are not getting a therapeutic dose, and you are not.  It is far more important to be on a therapeutic dose of a drug that works than it is to avoid low cell counts and  shots and/or transfusions.  This is what any good Onc would tell you to do.  You should pick the drug that gives you the best response and take higher dosage.



#7 Melanie

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Posted 16 August 2012 - 11:32 PM

Thanks everyone for your advice and imput. We've decided to try and get a consultation with Dr Cortes, if possible. Does anyone know if he will even take new patients, even just for a consult?

Trey, you say it's more important to be on a therapeutic dose of a drug that works than avoid the low counts, shots, and transfusions. I take it you feel the CML risk is greater than the risk of having the low counts, shots and transfusions. To me, it's all a risk and I'm not sure anymore what's best. Then there's always the cost factor involved and I can't help but think that has some influence on my thinking. Tasigna co-pay for me is $1680.00 a month. The shots run about $60 each (some weeks I get up to 5 shots) and the transfusions about a $1000 each time. It's definitely eating through our meager retirement savings and I'm not sure that's fair to my wonderful husband, although he doesn't care if we have to spend every cent and sell the house. But, Trey you may be right...this may be the best plan for me. I'm willing to try anything, but how long can a body continue go through all that and not start to break down?  You say all that may be necessary for a while...how long is a while?  I know everyone is different, but how do you know if you've given it long enough before you try something else? It seems my Dr says we have reached that point...I'm not so sure.

Thanks again everyone...praying for all of us!  Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#8 mariebow

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Posted 17 August 2012 - 12:13 AM

  mrbrown2010, I do not know if you have tried to get assistance with your medicine, on this site, there are numbers and pharmaceuticals companies and other help on this site.  Maybe you can seek help with the Tasigna. 



#9 pamsouth

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Posted 17 August 2012 - 12:18 AM

MBROWN

Sometimes they make is sound like it is all black and white and so easy.  Most people go on a high dose, until they bottom out or they can't tolerate the high dose, then take an extended holiday/vacation from TKI, OR go on 1/2 dose or lower dose, then their counts come back up some, hopefully stabilize somewhere, where you can tolerate the toxic side effects.  I did that once and I will be darn if I would do it again.  At my age and in my humble opinion, it is just as much dangerous to have low counts and living with transfusions and all those chemical pill and shots.  Dang I have seen people die or nearly die just from being on to many pills. A couple of years a go my husband went to the doc with arthritis and dang nearly killed him with the pills, I was dressing, feeding, bathing him.  Got him off the pills, and physical therapy, he has been working part time for a year now.  I guess it sometimes is a matter which is going to get your first.  Now if I were young and or had children that would probably be a hole different ball game.  But even them I am not sure how far down I would go before a stem cell transplant.  I would hate to be 18 years old and think of living on these TKI for ever.  Hopefully they will perfect the SCT, it is nasty and dangerous.  I don't think I would try it in my fifties, maybe forties.  Also you sure would need to have good caretakers.  Well if I got to go ( mind you I am 64 years old) I would rather live my life out feeing as well as I can without living on transfusions and pills.  For me I wouldn't even want to try another drug, they are even more powerful, and the only way is going to go down or bottom out again.  Why because you get a deeper response.  The CML is in everything before it become red cell, or platelets.  Even though they are not nucleus, the bad cml stem cell still make all red cells and platelets as well as the white cells.  So that is why when you take TKI it effects all the cells.  Heck I had over 2 million platelets at diagnoses.  Now it is a white cell nucleus PH+  but CML is in everything, so the deeper response the more cells it kills.  Well maybe the cells are normal but as long as they are not blast or acute they still work.  I am on my own little theory, I am willing to change living with a CCYR and not have blood transfusions.  For me that is plain crazy.  All those pills and transfusion and infections, PE, ect are dangerous too.  The older you get, even the more dangerous.  You can't put older people on a lot of med's.  We took care of mom for three years.  She was in the nursing home for awhile, they kill you with all those meds.  You have to give elderly people child like doses.  There has got to be a middle ground.  I think at one time we went to far in chemo people to death, then we went to far with Holistic, I looking for middle ground. 

My circumstance may be different then many other who may be younger and have children or are able to afford whatever.

I hear what your saying about which is worst, not being PCRU, and have low counts with transfusions, pills, endless labs and test, etc.  Or maybe finding a median.

I for one have chosen to find a median,  Is my onc happy NO,  am I happy Yes.  I have been on Gleevec for 7 years and am stable at CCyR with most of my CBC count close to normal or a little below normal. I have chosen more of a quality of life.  Yea the best specialist say better to go by the NCCA guideline and be undetectable.  but  you could still have millions of leukemia cells.  So how does one really know (perhaps in theory) which is best.  Well most onc or as most would say a good onc,  will say you are at a higher risk for the leukemia to mutate or perhaps become acute, or blast.  Well how does anyone know what that magic number by be.  How does anyone know, depending on your health, organs, etc, what the damage is done with low counts, and how can anyone tell anyone what kind of quality of life to life to live.  The stress of financial burden.  I am 64 years old, there is no way I would leave my good husband, who has worked all of his life and is now in his seventies to live in poverty and to give up our assets to meet high medical cost. The day I have to live on transfusions that is the day the day I will be hanging it up.  Now for others who don't mind living that way,

Well it is after 1am I should probably reread and edit this, as I am tired.  I hope you get my drift you got to weight it out and do what is right for you, different strokes for different folks.  All depends on how you look at it and what you want to try and the financial and stress, there is just so much to look at each individual circumstance and tweak it for them.  Trey is right that is what most good onc would tell you, but they don't live your life either.

PamSouth


PamSouth


#10 scuba

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Posted 17 August 2012 - 08:59 AM

Trey wrote, " It is far more important to be on a therapeutic dose of a drug that works than it is to avoid low cell counts and  shots and/or transfusions.  This is what any good Onc would tell you to do.  You should pick the drug that gives you the best response and take higher dosage."

Trey - Any good Onc would not necessarily propose what you wrote above. Certainly not Dr. Cortes. Dr. Cortes (my Oncologist at MD. Anderson) did not want me to take Neupogen. I asked him that I should take Neupogen based on what my first first doctor suggested and Dr. Cortes said NO. And my Neutrophils were below 0.5 at the time.

I want to be clear on this.

http://www.cancer.or...rugs/filgrastim

http://www.cancer.or...rugs/filgrastimPrecautions

Patients with acute myeloid leukemia (AML) or chronic myelogenous leukemia (CML) should not get this drug, as it could potentially spur the growth of these types of cancer cells.

Dr. Cortes had concerns that Neupogen could stimulate the CML. He uses Neupogen as a last resort and only for "emergency's". I fell to a Neutrophil level of 0.1  and he still did not suggest Neupogen to me. Instead he prescribed a series of drug interruptions to let the body recover. He told me it would take months, but he had confidence that over time I would generate enough good cells that treatment dose could be resumed full time. He said until we try the drug start and re-start using dose levels. Taking higher doseage as you wrote above is not necessarily the right thing to do. I even asked Dr. Cortes once I became stable if I should increase my dose from 20mg. to 40mg. He said NO. He was emphatic about it because I kept asking him to prescribe more. He said we find the minimum dose that works and stick to it. Exactly the opposite of what you wrote above. When fighting myelosuppression, it's a trade off between response and blood counts. A minimum dose that works vs. a higher dose with Neupogen shots.

MBrown - Go see Dr  Cortes, he will take you because you need him and he does not refuse anybody who has had a negative response. If he hesitates in taking you - tell me and I will call him and tell him to take you.  Personally, you should consider what Gary above suggested (Callmelucky). Cortes will likely have you start at 20mg. Sprycel.

The fact that you are failing Tasigna suggests you need a different kind of drug to attack the CML in a different way. Sprycel actually attacks higher up the CML blood making system and may very well work for you. There is a fair to good chance that a low dose Sprycel will enable you to maintain disease suppression while your body recovers a good blood system. Then Dr. Cortes may increase your dose to fight the disease harder - or he may just keep you at the low dose (if its working) like he did with me.

Sprycel is potent. It is not a "dose dependent" drug (i.e. more dose, more response). It is a threshold drug. There is a threshold for each person beyond which the drug has action in the body. More is not necessarily better.

In my case, I had poor response to Gleevec and I had severe myelosuppression (platelets, low, Neutrophils, dangerously low, RBC's 25% down). I was put on 70mg. of Sprycel and my blood counts tanked and my PCR response was poor. Still, Dr. Cortes had me just stop taking Sprycel until my levels returned and when they did, he resumed me at 20mg.Sprycel. (NO NEUPOGEN). My blood counts tanked again, but not as bad - I was taken off Sprycel until my counts returned. After a few weeks, I re-started Sprycel (20mg.). My counts fell one more time, but stayed above the danger level (Neutrophils fell to 0.6) and Dr. Cortes kept me on the drug. Over the next 3 months, my counts steadily improved to where they are currently (Neutrophils > 1.6). But more importantly, my PCR level went from 55% to 0.009% (last test six weeks ago) over seven months. I take only 20mg. Sprycel.  Now I also take a lot of Curcumin which could be augmenting the low dose Sprycel. That's the wildcard in all of this. Dr. Cortes did not allow my blood levels to rise to normal before re-starting me. He had me wait until I crossed the 1.0 Neutrophil level and then I was back on the drug.

Best to you,

Michael


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 Trey

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Posted 17 August 2012 - 09:41 AM

MB,

The CML risk is far, far greater than the risk of having low blood counts.  Most of us have lived with some level of low counts, some for a shorter time, some for a very long time.  The key is to fight the leukemia and not let it advance.  That must be done at any cost.  You have not said what your low counts have been, but some Oncs become overly concerned at levels that should be left alone, even though they are very low.  So if would help to know the actual counts.  You also had been taking curcumin, which your Onc told you to stop.  It may have affected you more than some others by lowering your cell counts.  You need to see how stopping curcumin (just a few weeks ago) changes things, if at all.

Michael,

The BIG difference is that you responded to low dose Sprycel, and MB is not responding.  If you had not responded, then what is better, stim shots or a transplant?  Often the shots are needed for a while, then the body can eventually handle the cell production on its own for most patients.  Dr Cortes would not send someone for a BMT if stim shots would  keep them from a BMT.  And what is more hazardous, stim shots or a BMT?  But I agree that some Oncs get overly concerned when the blood counts are very low, when they should just let the body work through it.



#12 scuba

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Posted 17 August 2012 - 10:23 AM

Hi Trey: I think the key difference here is that MB is not responding to Tasigna (loss of response). That is similar to me losing my response to Gleevec. And since Gleevec and Tasigna are similar drugs (bind to the same bcr-abl slot) and Sprycel is very different, there is a good chance MB may respond very well to Sprycel.

My point above is that before MB continues with STIM shots or be told to be prepared for transplant, she should try the 'start; interrupt, re-start' protocol as prescribed to me by Cortes. Keep in mind, when Cortes took me off the drug, he told me that the CML will grow, but that my normal system is also growing back. Only when the cells become overly numerous is the normal system shut down. It is this normal recovery, Cortes tries to engineer. He told me, he's not worried in the early stages if FISH levels go up during this process. He is more interested in getting the normal system back sufficiently so that the TKI no longer has to be interrupted. And then - he tracks closely the response. Cortes did not care about my FISH levels (or PCR for that matter) until I was on Sprycel 20mg. continuous for 3 months. He would have had me go on and off for a year before he would get concerned (except for blasts, he did want to track that). As it turned out, I cleared up in 3 months and resumed normal every day therapy.

On Curcumin. It's important to note that Curcumin does not suppress the normal blood system. Normal, non-leukemic people who take Curcumin for arthritis and the other things Curcumin is known for do not have suppressed blood levels. What Curcumin does do is down-regulate the systems. This means that rapid increases in blood is suppressed, but normal blood making is fine. This can be good in fighting inflammation when the body tends to over-react. And it is certainly good (my speculation) in causing leukemic cells to enter apoptosis since they are kept from dividing like they would like to be doing. Recall in my earlier posts that my normal blood recovery without Sprycel took an unusually long time (Dr. Cortes' words here). Cortes thought something was suppressing the CML since my FISH levels didn't change while I was off Sprycel (for 3 months!). I told him perhaps it was the Curcumin I was taking. He replied, "perhaps". And Curcumin is dose dependent unlike Sprycel. One has to take at least 8 grams every day consistently. But as you point out, there's little science here yet, so my experience is just anecdotal. I did continue to take Curcumin all through my myelosuppression episodes.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#13 Melanie

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Posted 17 August 2012 - 12:01 PM

Thanks, yes I've tried for all the different assistant programs and unfortunately we're just over the qualifying income line. It's frustrating, but they have to draw the line somewhere and I understand that. At least we were able to refinance our home, change to the best insurance we could afford, make some lifestyle adjustments, and with the help of our savings, we can pay for this treatment for a while. When that runs out, we pray God will provide a way and he always does.


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#14 Melanie

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Posted 17 August 2012 - 12:12 PM

PamSouth,

Thank you for your thoughts. They run along my own so well. When you're older, you tend to look at things a little differently and finding a balance that you can live with peacefully. This is such a scary disease and that's what makes decision making such a hard process when you're one of the 5% that doesn't respond to these TKI's like the majority of people do. I'm just so thankful there are TKI's to take to manage this disease and also thankful for this board where we can come and post our thoughts, fears, & successes.  It provides a wealth of support and knowledge that can't be found anywhere else.


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#15 Melanie

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Posted 17 August 2012 - 01:07 PM

Scuba

I'm familiar with your history as it's the one I shared with my Dr to get him to understand and allow me to try the low dose on again off again treatment plan. This last phase we've been going through though there's been no time off the drugs since Feb.21st. His plan was to try and keep enough drug in me, augmenting with stim shots, to actually get a response. I achieved that with my first fish result of 2.2% on Apr 30th. I got up to 450mg of T during this time, but my ANC never got above 1.6, except one time after 7 shots, when I got to 4.3. We stopped the shots and 7 days later, I was down to .1.  Also during this time my plt and rbc took a dive...plt down to 50 and hgb to 8.4. We then lower the dose to 300, then 150 to try and level out the blood counts. Been on 150 since June 13th (2 months) and hgb recovered to 10.0, plt back in the 100's, but anc around .6 with 3 shots a week. Next Fish result on 8/6 - 17.2%. I'm not sure if that's lost of response as it is just not high enough dose.

I'm very concerned with the use of Neupogen shots for the same reasons you've mentioned, but my Dr felt the danger was greater having the low counts, due to my 106 temps when I was dx back in May 2011. At dx, I also was dx with CMV, which may or may not have complicated everything and I think that's his concern. He still doesn't know if I was in AP or CP, or somewhere in between at dx, due to the high fevers, but I've had no fevers since June of 2011.

I would be happy to try S again and try the on and off treatment again, with no shots, etc. Last time with S, I had severe headaches and flu like symptoms, but they decreased at lower dosage.  My counts tanked too, so we know that outcome. I'm not afraid to "tough it out"...I trust my Dr, but is he too cautious or just out of his range of experience? I'm working on getting a consultation with Dr Cortes. Do you know if he's willing to work with other Dr on consulting? I don't think I would be able to travel to Houston all the time for appointments.

As for the Curcumin, I was only taking 2000mg. My hbg and plt did start to improve after I stopped taking it, but I also was on lower dosage of T at same time, so not sure if it played a role or not.

Trey, you can see my numbers above. It seems I can't hang onto any anc without the help of stim shots. Is my Dr overly cautious? I'm willing to try anything, but a SCT. How do you define what's "long enough" before another course of action should be considered?  I can live with low counts indefinitely if it keeps the CML in check. I guess I wonder if there's a chance the marrow will never be able to recover and make good cells on its own again. and I develop MDS.

I appreciate everyone's comments. Does anyone think that a try of Ponatinib might be worth it. I know my Dr is trying to work that angle too. Thanks all!


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#16 scuba

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Posted 17 August 2012 - 02:07 PM

Hi MB,

Dr. Cortes will work with your doctor. He worked with my first doctor who diagnosed my CML. Dr. Cortes still sends him all of the reports. I have not seen Dr. Cortes in person in a long time (my choice - I like him, I just don't like sitting around in his Clinic waiting for him). We do everything over email and the phone. He does insist that I have my PCR blood work done at MD. Anderson (which is every 3 months). He does not like outside labs. He told me he has been "burned" many times using outside lab data for Clinical evaluation. I suspect that he will gladly consult with your doctor.

Dr. Cortes was quick to drop my Sprycel 70mg. dose to zero when my Neutrophil level fell to 0.1 (which happened over just a few days from 1.1). He stopped me and waited. He did tell me that if I developed any fever at all during this time (above 99.5) that I was to go straight to the emergency room. He told me that getting a fever with Neutrophils at 0.1 could be fatal. That was sobering. So I asked about Neupogen again - and he said, "as long as your not sick, I want to stay away from it". He expected my Neutrophils to recover quickly without Sprycel in my blood (i.e. a few days). Fast recovery did not occur - it took 3 months, but I was back over 0.5 Neutrophils in 5 days which took me out of the danger zone. Those 3 months were glorious. No drugs, no side affects and normal life. But I do admit that on 20mg. Sprycel, I have no side affects.

The 2000mg of Curcumin you were taking is useless as a dose for cancer - especially blood cancers. It would be as if you were not taking anything. This was told to me by Dr. Aggarwal (MD Anderson) who is a Ph.D. researcher in Curcumin. He is the one who told me I need at least 8 grams daily to have benefit. Although you may have had Arthritis benefits, if you have arthritis, from the 2 grams of Curcumin. Curcumin is reported to work best once the oral dose gets above 8grams (which is a lot of Curcumin) and as high as 12 grams can be tolerated. My greatest drop in PCR was associated when I became consistent at taking 8 grams of Curcumin along with Sprycel. My skin did not turn yellow and I have not developed a South Asian accent. I am experimenting with other formulations of Curcumin (nanoparticles) that claim to have better bio-availability so I don't have to take all those 1 gram Curucmin pills. I will report here once I get my next PCR result. My goal is to get to PCRU (like all of us) and then stop Sprycel and see if the Curcumin can keep me at an undetected level. That will be my experiment. It's not scientific.

One additional note on Curcumin. There's no magic here. And it's certainly no cure. And for some people with thin blood, it may lead to bleeding or diarrhea. My platelets hover around 70-80 (fairly low) but I have had no unusual bruising. So I continue to take it.

As I wrote in response to Trey - Curcumin does not lower people's blood count levels. It down regulates key bio-chemical pathways that perhaps would slow down the body's "response" time. So whereas a person's normal red blood would be between 4 - 6 - if sudden blood loss occurred, the recovery would probably be slower with Curcumin present, but still continue.  It's interesting to note that since I have been taking Curcumin, I haven't been sick once - not even a cold (which is a virus controlled by lymphocytes, not Neutrophils). And now there's evidence that Curcumin interfere's with virus' replication. It has been shown, in scientific studies, that the down-regulation of key bio-chemical pathways in Leukemia cells is fatal to the cells (apoptosis is induced) and not fatal to normal cells. That is the promise of Curcumin. That it can actually participate in causing CML cell death.

(p.s. I did have Sprycel headache when I took the 70mg. dose. It was tolerable, but still a pain. When I started 20mg., I had no headaches whatsoever. I drink alcohol most days (wine and only single malt scotch), enjoy a good cigar now and then and otherwise live normally. 20mg. daily is like taking nothing at all.). And I am finally getting so close to PCRU, I can taste it.)


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 pamsouth

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Posted 17 August 2012 - 02:07 PM

Scuba,

Thank you, Thank you, for your post on this thread.  That is way I see it.  Letting you body (CBC counts) adjust however that may work, and staying at a safe TKI dose and maintain a stable FISH/PCR.

Just seems like some docs don't want to do that, they want you at undetectable, even if it means tanking out on your other counts and maintaining with transfusions and shots for however long.

Tricky for some  us to find a treatment that is tweaked for each individual.  Guidelines are set for the whole wide world, we all don't all fit into a guideline, it needs to be tweaked for individuals.

However I do see MBrown delima  if the TKI's can't be tweaked for him, would a transplant be something to be considered.  I was diagnosed at 57 Years old and had a sister and a brother that were a match.  I also flew to MDAnderson, had scheduled appointments for a 4 days.  I met with a team that went thru the whole transplant procedure, and it did scare me, that is for sure!!!  Said at my age I probably wouldn't have had full radiation.  There were straight shooting about how dangerous it was that was in 2005, I don't know if it is any safer.   If I had been maybe 10 years younger I would have went for it.  I might had MDAnderson is great dealing with the Insurance companies and getting approvals and all the take the head ache out of all that with a case manager, they are great!!! 

Since the Gleevec was working and my CBC labs were coming back up (after they tanked out)  I decided not to do it.  However back here in Indiana my FISH/PCR labs were sent to New Jersey, Gen Path, which labs  for 5 years said I was PCRU, while my fish were still a little positive. GenPath redid the testing a few times and was still PCRU, I gave all the labs to the new onc and he said there was no way those labs could have been right, and I was at a stable CCYR.  On my consultation he seemed to be happy to leave me stable at CCyR with my other counts close to normal, kidneys a little low at GFR 58..  Saying he had patients who even chose to go off TKI'S for a year, but eventually went back on TKi.  He also said he had some patients who went off because they weren't able to afford it, so he didn't elaborate on that.  He really didn't seem to give me the impression I was in any danger of being CCyR.  But then when I became his patient, all that changed.  I did complain to his office manager, That I thought that was unfair of him, to mislead me.  But the office manager blamed the miscommunication on the nurse.  As the nurse was calling me back and forth, supposing the nurse was speaking for the onc.  But office manage said it didn't come for the good onc, so she took the whole blame.  Well things seem to have ironed out, maybe.  All though at last visit he still pushed for Sprycel, but said I could stay where I was on Gleevec, I looked stable, but again he liked Sprycel better. .  I think that would be because the onc works in research 3 days a week and see patients two days a week.  I would imagine if i asked more questions he probably needs more patients on Sprycel for his research, since It came out in 2010 and I believe was only in clinical trial for 24 months.  I think Sprycel works great for some, but it seems many have the PE effect and their dose is eventually cut in 1/2 or they go back to another TKI.  Really kind of scary for me to change when I am stable on Gleevec.  For me I would just soon watch and wait, that I stay in a stable range and PH+ doesn't go up, up.

Anyhow I will soon be having my third lab at the New Onc and hopefully it will maintain being stable along with the other two lab this year.

Thanks Again Scuba for explaining for full scope of your treatment and labs.  makes perfect sense, at least that would be my goal, if Gleevec fails me.

PamSouth


PamSouth


#18 scuba

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Posted 17 August 2012 - 02:24 PM

MB - I just noticed that you tried Sprycel before?  MB wrote, " I would be happy to try S again ...". What were your results on Sprycel?


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"


#19 mariebow

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Posted 17 August 2012 - 02:42 PM

Yes I believe that God will make a way.



#20 Trey

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Posted 17 August 2012 - 03:57 PM

MB,

You could attempt to get Ponatinib but it might need to be as "compassionate use" rather than by clinical trial.  Ask your Onc. 

Michael,

Before I respond to someone who has a serious issue, I read their previous postings to see what the right response should be based on the more complete story, which is why I wrote my responses the way I did. 

Curcumin is a known immunosuppressant, and people with low blood counts take a risk if they use it in large doses. 

http://www.journalof...0140-4/abstract






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