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Blast Crisis CML

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#21 WiscoTex

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Posted 17 January 2016 - 02:30 PM

Thanks I will look out for him! I am also in touch with another blast crisis survivor who has been a miracle for me to talk to. Calmed my fears. My dad can beat this! Staying positive!

#22 hannibellemo

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Posted 18 January 2016 - 06:14 PM

WiscoTex,

 

I'm so glad you have found someone to talk to who has been through it. Their experience beats our "theory" any day, but know we are thinking of you and wishing the best for your father.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#23 Noodle

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Posted 18 January 2016 - 11:50 PM

Tex,

We have another Tex who mainly posts on AML and SCT groups as he is a 10+ year survivor of both. I'd recommend that you post there as there are many who have traveled the SCT path. I am a three year survivor of AML chemo only. I had close to 30% blasts at Dx at age 48 and I'm doing fabulous by the grace of God.

Blessings
Julie

Blessings,

Julie

DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..


Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."


#24 r06ue1

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Posted 19 January 2016 - 07:00 AM

Hi Noodle, seen a few people over the last few months mention that they had chemo only and went into remission; is the odds of that happening very low?  Also, is AML very similar to CML 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


#25 Noodle

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Posted 19 January 2016 - 09:47 AM

According to my med team who only treat acute luekemias and lymphomas requiring SCT, about 25% of AML patient can be cured, yes they used that word, with chemo only. The treatment plan is based on the cytogeniics of the subtype you have. AML is identified by favorable, intermediate and poor categories. I was blessed with a favorable subtype, inversion 16 meaning my 16th chromosome inverted. This is about 5% of those dxd. When my med team presented my treatment plan they gave me a letter that showed 70% chance of cure.

In March, I am 3 years since DX and 2 years four months since any treatment. I am in better health today than when I was dxd due to improved diet and exercise.

The bottom line is favorable and intermediate sub types can be cured with chemo only.

http://www.cancer.ne...id-aml/subtypes

Thanks for asking

I do give all the credit to almighty God for my healing. I am a walking miracle.

Julie

Blessings,

Julie

DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..


Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."


#26 WiscoTex

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Posted 19 January 2016 - 12:30 PM

Neither of my dad's two brothers are a match.

#27 Noodle

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Posted 19 January 2016 - 02:43 PM

Wisco tex,

It is not uncommon to not find a sibling match. There is only a 25% chance of that occurring. Many get a 10/10 unrelated donor via the international registry. If he is of northern European decent chances are very good. Is his med team looking for a match through the registry?

Julie

Blessings,

Julie

DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..


Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."


#28 Trey

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Posted 19 January 2016 - 04:13 PM

CML is different than the other forms of leukemia because the originating chromosome translocation for CML happens very high in the blood making (hematopoietic) chain, higher than most other leukemias including many AML subtypes.  Some forms of AML can be cured or put into long term response by chemotherapy, while for CML it almost never happens.  For those leukemias where chemo can cure the patient, the originating leukemic cells are rather low in the stem cell hierarchy, maybe even down in the progenitor cell level.  So it is much harder to use chemo to wipe out the originating CML leukemic cell(s) due to their superior survival skills, which is why prior to TKI drugs CML was the worst type of leukemia in terms of survival. 

 

A transplant can work because the chemo used is much stronger (along with radiation and graft vs leukemia effect) which wipes out the entire existing blood making system, including the very high level stem cells where the CML originates.  But then this stronger chemo regimen requires replacing the blood making system with donor cells which can start over. 



#29 Noodle

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Posted 19 January 2016 - 08:59 PM

Great explanation, thanks Trey

Blessings,

Julie

DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..


Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."


#30 r06ue1

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Posted 20 January 2016 - 06:27 AM

Great info as always Trey, thanks.


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


#31 Kresendis

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Posted 23 January 2016 - 04:17 PM

Hello hin! Would you do me a huge favor and see if the survivor you've been speaking with would also speak with me? My husband is in blast phase and I'd love to hear from someone in the same situation!

Thanks I will look out for him! I am also in touch with another blast crisis survivor who has been a miracle for me to talk to. Calmed my fears. My dad can beat this! Staying positive!



#32 acl

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Posted 23 January 2016 - 05:04 PM

Hi there,

 

Has anyone ever been in blast crisis and survived without having a stem cell transplant?  My dad was diagnosed with CML July of 2015 and at initial diagnosis he was in chronic phase.  He stayed in chronic phase on Gleevec for a few months, however in just a few weeks between getting his blood tested he advanced to blast crisis (diagnosed early December).  He has now been on Sprycel 140mg since - aside from two weeks when he was taken off Sprycel because his counts were so low (this was very scary and seemed unorthadox - WBCs increased during this time from 4,000 on a Thursday to 34,000 the following Tuesday. 

 

He has side effects from the 140mg Sprycel that I wouldn't really call manageable.  His latest counts were WBCs of 4.7, RBCs of 1.95, Hemogloblin of 6.7, platelets of 17, and absolute neutrophils of 0.4.

 

The goal of treatment is to get him in second chronic phase and hopefully do a bone marrow transplant.  He has two brothers and we should hear sometime next week if they are a match or not.

 

From all of the reading I have done, it looks like there is little chance for him to stay on Sprycel for a longer amount of time than a few months, even though it is "working" because the disease is so unstable it is likely to mutate and become even more aggressive without a BMT.

 

I guess I am wondering if anyone has any feedback about living through blast crisis CML and how they were treated.  Bone marrow transplant?  Continuation of TKIs?  Clinical trials? 

 

Anyone have any information on the clinical trial NCT02319369 that relates to DS-3032b?  I don't know much about it, however know that it is a Phase I study and those in blast crisis are potentially candidates (I contacted the MD Anderson Cancer Center about the trial).

 

As of the last bone marrow biopsy my dad had 28% blast cells.  I know that's not good, but after doing some reading it looks like his chances might be okay since this used to be classified as Accelerated Phase.

 

Any words of wisdom are much appreciated.  We thought we had won "the cancer lottery" when he was diagnosed because there were so many revolutionary TKIs available - he could deal with side effects so long as we had years and not months with him.  As a family our world came crashing down when in such a short amount of time he moved into blast crisis. 

 

I am learning to take it one day at a time and try to control what I can control!

 

Courtney

WiscoTex

Courtney, Sorry to hear about you Dad's situation. My thoughts and prayers are with your Dad and family. Please keep us posted.

 

acl


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%

 

 

 

 


#33 WiscoTex

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Posted 29 January 2016 - 03:56 PM

Hello hin! Would you do me a huge favor and see if the survivor you've been speaking with would also speak with me? My husband is in blast phase and I'd love to hear from someone in the same situation!
 

I'm so sorry for taking so long to get back to you.  I was having trouble logging back into my account and there has been a lot happening in my life these days.  I don't feel comfortable giving you his contact info. directly, so please go through Katie Schoeppner.  She works for Be the Match and puts people in contact with other people who have been through similar situations.  This is how I was put in contact with another blast survivor. kschope2@NMDP.ORG



#34 WiscoTex

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Posted 29 January 2016 - 04:04 PM

CML is different than the other forms of leukemia because the originating chromosome translocation for CML happens very high in the blood making (hematopoietic) chain, higher than most other leukemias including many AML subtypes.  Some forms of AML can be cured or put into long term response by chemotherapy, while for CML it almost never happens.  For those leukemias where chemo can cure the patient, the originating leukemic cells are rather low in the stem cell hierarchy, maybe even down in the progenitor cell level.  So it is much harder to use chemo to wipe out the originating CML leukemic cell(s) due to their superior survival skills, which is why prior to TKI drugs CML was the worst type of leukemia in terms of survival. 

 

A transplant can work because the chemo used is much stronger (along with radiation and graft vs leukemia effect) which wipes out the entire existing blood making system, including the very high level stem cells where the CML originates.  But then this stronger chemo regimen requires replacing the blood making system with donor cells which can start over. 

 

 

Trey,

 

This isn't in direct response to your above quote, however I definitely need some advice.  My dad, of European descent, has NO MATCHES.  My parents found out yesterday and we are totally blown away.  I emailed the stem cell/bone marrow transplant coordinator to confirm that they also checked the international registry, which they did.

 

He has absolutely zero matches at this time.

 

Kits are being sent in the mail to my brother and I.  The coordinator of BMTs said my brother and I will be 50% matches and they could still use us as donors.  Thoughts?  That doesn't seem like a viable option to me right now.

 

I have been reaching out to the top CML cancer centers.  No responses yet.

 

He is now on 100mg Sprycel and seems to be tolerating the dose better, however I know that is not a long term solution.  I am so confused because he would be considered a Sudden Blast Transformation patient.  I've found very little information about this, but ultimately it is extremely rare.  I'm also confused how it's even possible that someone with his ethnic background has no match at all. 

 

He is hanging in there and still goes to work most days.  I am blown away by the whole situation and how unlikely this is to have happened.

 

I hope you can provide some thoughts and advice. 

 

I'm not giving up hope and plan to host a bone marrow drive through Be the Match in Dallas.  I've also been trying to reach out to my peers through social networking to get them to sign up as well.  I'm 26, so in that perfect age range for my peers to sign up and be on the registry.

 

I don't know what else to do.

 

Thank you so very much for your response in advance.
 



#35 WiscoTex

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Posted 29 January 2016 - 04:09 PM

This is basically the only article I found.

 

http://www.ncbi.nlm....pubmed/16195326

 

"Sudden blastic transformation in patients with chronic myeloid leukemia treated with imatinib mesylate"



#36 WiscoTex

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Posted 29 January 2016 - 04:13 PM

BLOOD, 15 January 2006 - Volume 107, Number 2.



#37 scuba

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Posted 29 January 2016 - 05:25 PM

In addition to everything your father is doing, he should consider getting his vitamin D level tested. I suspect his level is below normal or low normal (normal is considered 30-50 ng/ml, but research is suggesting this is insufficient where cancer is concerned).

 

Vitamin D is known to help progenitor malignant blood cells including malignant blast cells to differentiate. It can't hurt and perhaps could help. I maintain my vitamin D level above 60 ng/ml and prefer to get it up to 70-80 ng/ml. 

 

http://www.ncbi.nlm....les/PMC1906205/

 

http://www.ncbi.nlm....les/PMC2879394/

 

http://www.ncbi.nlm....les/PMC3166406/


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"


#38 Trey

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Posted 29 January 2016 - 07:10 PM

Courtney,

Although his docs are saying "no match", in reality matching is a continuum, not a "yes/no" proposition.  A "perfect match" is only ever identical twins who will match hundreds of HLA alleles.  Otherwise, matching discusses 12/12 or 10/10 as "perfect matches" although this is imprecise terminology.  There are hundreds of human alleles, but some are more important than others.  There are 10 or 12 important ones, and even among those some are more important than others.  Some transplant centers will proceed with as low as a 6/10 match if the most important ones are matched.  Generally one would prefer a 8/10 or higher.  So I would ask the docs what "no match" means, and if they really mean they only allow 8/10 or better, he may need to find another transplant center which allows 7/10 or even as low as 6/10.  So it is important to understand exactly what "no match" actually means. 

 

The use of children as donors to parents has been in clinical trials for several years.  It is called "haploid" matching.  This is a 5/10 or 6/12 matching.  A child gets half (haploid) of its chromosomes from each parent.  This is an option, although risks are not low.

 

Fetal cord blood collected during birth and donated can be used for transplant.  It takes two samples, so the samples will not match.  But the HLA allele matching is not required since cord blood does have "set" HLAs, so is adaptable to a patient.  But this is also not low risk.

 

I would encourage you to read this transplant info:

http://treyscml.blog...ics-on-cml.html

 

Regarding blast phase at initial diagnosis, it is rare.  You will never be satisfied by trying to figure it out.  There are no real answers.

 

If he has not had a Flow Cytometry test, he needs one to show the types of cells which make up his blast status.  Ask the docs what lineage his blast crisis is comprised of; it could be myeloid or lymphoid, and very rarely megakaryocytic.  This information can be useful.



#39 WiscoTex

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Posted 01 February 2016 - 10:37 AM

Courtney,

Although his docs are saying "no match", in reality matching is a continuum, not a "yes/no" proposition.  A "perfect match" is only ever identical twins who will match hundreds of HLA alleles.  Otherwise, matching discusses 12/12 or 10/10 as "perfect matches" although this is imprecise terminology.  There are hundreds of human alleles, but some are more important than others.  There are 10 or 12 important ones, and even among those some are more important than others.  Some transplant centers will proceed with as low as a 6/10 match if the most important ones are matched.  Generally one would prefer a 8/10 or higher.  So I would ask the docs what "no match" means, and if they really mean they only allow 8/10 or better, he may need to find another transplant center which allows 7/10 or even as low as 6/10.  So it is important to understand exactly what "no match" actually means. 

 

The use of children as donors to parents has been in clinical trials for several years.  It is called "haploid" matching.  This is a 5/10 or 6/12 matching.  A child gets half (haploid) of its chromosomes from each parent.  This is an option, although risks are not low.

 

Fetal cord blood collected during birth and donated can be used for transplant.  It takes two samples, so the samples will not match.  But the HLA allele matching is not required since cord blood does have "set" HLAs, so is adaptable to a patient.  But this is also not low risk.

 

I would encourage you to read this transplant info:

http://treyscml.blog...ics-on-cml.html

 

Regarding blast phase at initial diagnosis, it is rare.  You will never be satisfied by trying to figure it out.  There are no real answers.

 

If he has not had a Flow Cytometry test, he needs one to show the types of cells which make up his blast status.  Ask the docs what lineage his blast crisis is comprised of; it could be myeloid or lymphoid, and very rarely megakaryocytic.  This information can be useful.

Hi Trey,

 

He was actually initially diagnosed in the chronic phase and was on Gleevec for about 6 months.  From one blood test to another test 3 weeks or so later he went from chronic phase to blast crisis.  I believe this is called "Sudden Blast Transformation".  I am looking into what was meant by "no match".

 

The nurse said his odds would be just as good of having a successful transplant with an unrelated donor that was an 8/10 match as compared to using my brother or myself as 5/10 related donors.  I've never heard of this before in all of the reading and research I've done.

 

Trey, are you an oncologist?  Just wondering and as always I appreciate the helpful information.  My mother is now considering trying to get my dad a second opinion or move to one of the top CML treatment centers in the country.

 

We just hope Sprycel continues to keep his CML in check.

 

Thank you!



#40 Trey

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Posted 01 February 2016 - 01:34 PM

I am NOT a doctor.  I just know a lot about CML.

 

The issue of "Sudden Blastic Transformation" relates to the CML being under long term control and then suddenly transforming.  But your Dad's case is probably more a matter of where his disease was headed anyway, and if he had been diagnosed several months later it would have been a Blast Phase diagnosis.  So I would not try to figure out what happened.  Nothing happened which was not already going to happen.  His disease was never truly under control.

 

If I were in the area where your Dad lives I would go see Dr Talpaz at Univ of Michigan.  He is a true CML Expert.  U of M is also a transplant center.

http://www.uofmhealt...moshe-talpaz-md

 

Otherwise, has he had a Kinase Mutation Test done?  This would show if he has a mutation which prevents most drugs from working, but Iclusig (Ponatinib) can work in some cases (such as the T315i mutation).  He should also have a Flow Cytometry Test done to characterize his exact type of blast phase (lymphoid or myeloid).  I would suggest having these done before seeing someone like Dr Talpaz.

 

An 8/10 match would normally be a better approach than a child-parent haploid BMT.







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