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#1 Daisy1985

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Posted 19 March 2013 - 05:50 AM

Hi everybody

My husband Tom came back from his hematologist with quite worring news. He s taking Sprycel now since almost a year, after first failing Glivec, and everything seemed to work fine, the sides are almost washing away, but apearently it s not going so well in his marrow. First I should say that it s not possible to extract marrow from him for analysis, after some failed attempts, the doctor is just analysing the blood, cytogenics os something like that, to see how many cancer cell are aout of 20.

Well, it  appears at the last test, 3 months ago, that there is no progress, the bad cells didn t drop. The doctor thinks that s a dangerous situation because they can explode at once and lead Tom in an acute leukemia. So he s going to wait for the results in two weeks and if it still didn t drop, then consider another option. Actually he s even considering a transplantation, but I thought that was more a last option resort.

My question is, are there other pills he can try, that work for those who failed Glivec and Sprycel, maybe a clinical trial? Did somebody of you guys experienced a similar situation?

I m trying to keep our heads up, but Tom is quite dissapointed about this.

Thanks you guys for being here

Best  wishes to eveyone



#2 Daisy1985

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Posted 19 March 2013 - 06:00 AM

One more detail, because the bone marrow aspirations failed, ( the doctor said he could never extract anything because the marrow is as hard as a stone ) Tom could never be tested for a mutation.



#3 nelnorm

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Posted 19 March 2013 - 09:03 AM

Call MD Anderson in Houston, Tx and ask about clinical trials with Dr. Jorge Cortez with the new drug Ponatinib.   Good luck.



#4 Trey

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Posted 19 March 2013 - 10:04 AM

It would be more helpful if you would provide actual test results. 



#5 CallMeLucky

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Posted 19 March 2013 - 12:01 PM

Ponatinib is FDA approved, it is not necessary to be in a clinical trial to receive it.

There are a number of things that would need to be known such as phase and prior test results.

To the question are there other drugs to try, yes there are three (technically four) other approved CML drugs

Gleevec (imatinib)

Sprycel (dasatinib)

Tasigna (nilotinib)

Bosulif (bosutinib)

Iclusig (ponatinib)

Synribo (omacetaxine mepesuccinate)

If he outright failed to get things under control with Sprycel after failing Gleevec, I would expect them to jump him to ponatinib.


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%
 

 


#6 nelnorm

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Posted 19 March 2013 - 01:08 PM

True. It is available for doctors to prescribe.  However, if Tom is wanting to be in a clinical trial, there are some available with Dr. Cortez and medication is free if that is a big issue with copays.  At least, he could inquire as to whether he would qualify for one of the clinical trials .



#7 Daisy1985

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Posted 19 March 2013 - 01:22 PM

Tom is still in chronical phase; dx about 15 months ago and all the bloodworks are in the normal range, he s also feeling very well. Problem is they can never manage to extract marrow so I cannot give any PCR results or mutation tests. The doctor is monitoring him at the hand of the cytogenics ( i think he calls it like that) to see how many leukemic cells there are out of 20. So when he was dx he had 20/20, the he started glivec and after 3 months he dropped to 19/20 ( he achieved Chr at 1 month) . That was not enough response, so the doctor switched him to Sprycel, and at 3 months he dropped to 17/20. But then he stopped from dropping, it s like a plateau, 3 months nothing changed. In two weeks we shall receive the results of today and if it s still the same or, knock on wood, higher, then we have to act.

I m a bit confused that the dr is arleady mentioning the transplant option, since there are some other good drugs out there.



#8 Daisy1985

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Posted 19 March 2013 - 01:25 PM

thanx for the advice, but we re living in Belgium so doing a clinical trial in the US is a bit difficult, but I can ask if he can to some trials here.



#9 Sneezy12

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Posted 19 March 2013 - 01:34 PM

PCR and Mutation tests can be done from blood. Is he seeing a CML Specialist? Frank



#10 Daisy1985

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Posted 19 March 2013 - 01:41 PM

He s seeing a hematologist, and he told us that since they could not extract any marrow, they could not test him for mutations. There are also general milestones that u have to reach and the dr is comparing his results to those. We live in a small city and when in doubt the dr is always consulting his collegues, other specialists, so I think he knows what he s doing.



#11 Sneezy12

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Posted 19 March 2013 - 02:35 PM

He does not know what he is doing if your information is accurate. Also, a Bone Marrow Biopsy can nearly always be obtained by using special techniques.



#12 CallMeLucky

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Posted 19 March 2013 - 03:11 PM

It is not necessary to do a bone marrow biopsy to check response.  Call the doctor and ask him if he can do a peripheral blood FISH and PCR.

On the other hand, if he is doing Karotyping and after 3 months on Sprycel he is still at 17/20 for PH+ chromosome, then that is certainly an issue.  A mutation test is needed to determine if he has a mutation that does not respond to TKI drugs.  My understanding is that a mutation test can be done on peripheral blood.  The good news is that ponatinib works on all known mutations so even without a mutation test, if he is not responding to Sprycel and they can't test for mutation then he should try to get on ponatinib if possible.


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%
 

 


#13 Trey

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Posted 19 March 2013 - 04:14 PM

Marrow is normally used for CML cytogenetics testing where 20 dividing cells are examined under a microscope and chromosome mutations can be seen.  The Philadelphia Chromosome is the CML chromosome mutation where chromosome 22 becomes mutated by exchanging a piece of material with chromosome 9.  If the marrow is dry and/or hard, then circulating blood can be used, but it normally only works if there are a significant number of blast WBCs in the peripheral blood.  These cells must be harvested and grown, then examined.  You can read more here:

http://cytogenetics....ood-tissue.html

FISH is a second type of cytogenetics test, but uses dyes to find the leukemic BCR-ABL genetic material.  You did not mention such a test, but it would be good to have it done, also.

The kinase mutation test can be done on blood.  It would be a good idea to have this test done.  Here is a US lab that does this using blood or marrow:

http://www.aruplab.c...sts/0040138.jsp

It sounds like Tom has only achieved CHR response levels.  That is not good enough for the longer term, so something else must be done.  He will need to find a drug that works better, or else a BMT would be required at some point. 

Please find out exactly which tests were recently performed and provide results when you have them.  We hope the recent tests show improvement.



#14 Daisy1985

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Posted 20 March 2013 - 10:30 AM

Thank you guys for the feedback, I ll keep you posted when we ve got the recent test results, fingers crossed !

Best wishes to everyone



#15 Susan61

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Posted 21 March 2013 - 12:19 PM

Hi Daisy:  I am just jumping in here after reading your posts.  I agree with what Frank just told you.  You said this doctor is a Hematologist.  Is he a Oncologist/Hematologist. Find out how many cases of CML does he treat.  Have you gone for second or third opinions.  A lot of this does not make sense. Once I got to a Cytogenetic Response on Gleevec,they started to do just a PCR blood test on me which is all I have been doing for years now.  Maybe this doctor is not experienced in how to do a BMB.  Please look into this a little bit more before you even think about A BMT.

Follow up on everything Trey has told you also.  I wish your husband the best in getting to the bottom of his treatment, and see if all is being done correctly.

Susan



#16 Daisy1985

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Posted 21 March 2013 - 01:35 PM

Thank you Susan for your advice.

We are not thinking about a BMT at the moment because I Knww 3 new drugs were released last year, so maybe he can try that. We are going to wait for the results and the battle plan and perhaps going for a second opinion.

Greetings

Daisy






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