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Blast Crisis CML

blast crisis sprycel bone marrow transplant stem cell transplant fatigue low counts

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#1 WiscoTex

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Posted 13 January 2016 - 04:20 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



#2 hannibellemo

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Posted 13 January 2016 - 04:27 PM

Courtney,

 

I'm so sorry to hear about your father. I can't give you the answers you need but Trey (our resident expert) will hopefully read this and be able to answer to your questions.

 

In the mean time, know that we are all pulling for your dad and are here for you whenever you just need to "talk"


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>


#3 Trey

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Posted 13 January 2016 - 05:41 PM

His short history shows a high level of CML instability.  That very rarely reverses (maybe a couple percent).  Transplant is the only option with much chance of success.  The best he can hope for from TKI therapy is to get to some degree of stability and maintain it long enough to start a bone marrow transplant (BMT) while in decent overall health.  If he does stabilize, it will likely only be for a short time.  Timing is very critical.  He needs to prepare himself in every way he can for a BMT.  You should read this:

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

 

Having said all that, age is a significant factor in BMT success, especially under unstable disease conditions.  If he is under approximately 55 then he has a better chance, if low 60s then less so, if above 65 then chances are probably not very good.

 

DS3032b is not specific for leukemia, so it is only in the very early stages of investigation.  There seems to be little data on it in relation to leukemias at this point.  I would consider the risk very high with low probability of success.  Also, there is little control over drug dosage during a clinical trial, since most patients get randomized into a lottery type dosage, which could be too low for him.  More likely a clinical trial would cause him to miss any remaining BMT opportunities, which are already closing fast.

http://tatcongress.o...06-schwartz.pdf



#4 kat73

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Posted 13 January 2016 - 06:59 PM

Trey - I have heard that better results are happening for patients older than 65 in certain medical centers.  No?


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#5 Trey

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Posted 13 January 2016 - 10:33 PM

Better than in the past does not necessarily mean "good".  Youth has its advantages.



#6 soundoff

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Posted 14 January 2016 - 12:22 AM

cflanders2,

Sorry to hear about your Dads situation. 28% blasts is very high, I would be pushing for a BMT asap. I wouldn't go the trial route at this point. Unfortunately there aren't many if any CML'ERS that have been diagnosed with blast phase on this board. Keep us posted.

Soundoff

#7 r06ue1

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Posted 14 January 2016 - 07:36 AM

I'm pretty new here so I am by no means even close to being an expert but this sounds very strange to me.  Are you sure that they got the diagnosis right when he first went to the hospital?  Did they do a BMB and FISH?  What was his blast count at diagnosis?  Was he making progress (weekly, bi-weekly then monthly tests, decrease in WBC counts and better PCR result at the three month test than at diagnosis) the first three months on Gleevec?  It's really scary to think you could be doing good and then all of a sudden you are in Blast Crisis.  

 

My Oncologist (Seidman Cancer Center, University Hospitals) told me that if I were in Accelerated or Blast at diagnosis I would have been getting a BMT.  My blast at diagnosis was 1%.  If I were you, I would try to get to one of the top cancer hospitals in the country, you can search that pretty easily but here is one list along with the link:  

 

The Top 20 Cancer Hospitals

1 Memorial Sloan Kettering (MSK) Cancer Center, New York City 2 University of Texas M.D. Anderson Cancer Center, Houston 3 Mayo Clinic, Rochester, Minnesota 4 Dana-Farber/Brigham and Women's Cancer Center, Boston 5 Johns Hopkins Hospital, Baltimore, Maryland 6 University of Washington Medical Center, Seattle 7 Massachusetts General Hospital, Boston 8 UCSF Medical Center, San Francisco 9 UCLA Medical Center, Los Angeles 10 Stanford Hospital and Clinics, Stanford, California 11 Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia 12 City of Hope, Los Angeles 13 Cleveland Clinic 14 New York-Presbyterian University Hospital of Columbia and Cornell, New York City 15 University of Colorado Hospital, Denver 16 Moffitt Cancer Center, Tampa, Florida 17 Northwestern Memorial Hospital, Chicago 18 Seidman Cancer Center at UH Case Medical, Cleveland 19 Fox Chase Cancer Center, Philadelphia 20 Wake Forest Baptist Medical Center, Winston-Salem, North Carolina

 

http://www.medscape....warticle/828249


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


#8 WiscoTex

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Posted 14 January 2016 - 07:51 AM

Good morning,

I appreciate everyone's thoughtful replies. He is currently getting treatment at the University of Wisconsin, Madison. From what the doctors tell us it was extremely unlikely to advance this quickly - 1% per year chance?

I am an alumn of Wisconsin however have still encouraged him to think about moving to get treatment out of state. This encouragement hasn't been successful. I am not sure how to advocate for my father. He is young enough to still need to work but old enough where a transplant is a scary thing.

I hope none of you with CML have to go through this.

#9 snowbear

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Posted 14 January 2016 - 08:02 AM

Hi. I know of one CML'er that needed a transplant - in fact, he had 3 within a year.  Last I heard, he was doing well.  His name is Brandon.  You can probably find him on the transplant board and send him a private message.  I don't know though, if he still comes on or how long it will to get a response.

 

Good luck and best wishes for your dad.



#10 rct

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Posted 14 January 2016 - 08:50 AM

I'm pretty new here so I am by no means even close to being an expert but this sounds very strange to me.  Are you sure that they got the diagnosis right when he first went to the hospital?  Did they do a BMB and FISH?  What was his blast count at diagnosis?  Was he making progress (weekly, bi-weekly then monthly tests, decrease in WBC counts and better PCR result at the three month test than at diagnosis) the first three months on Gleevec?  It's really scary to think you could be doing good and then all of a sudden you are in Blast Crisis.  

 

My Oncologist (Seidman Cancer Center, University Hospitals) told me that if I were in Accelerated or Blast at diagnosis I would have been getting a BMT.  My blast at diagnosis was 1%.  If I were you, I would try to get to one of the top cancer hospitals in the country, you can search that pretty easily but here is one list along with the link:  

 

The Top 20 Cancer Hospitals

1 Memorial Sloan Kettering (MSK) Cancer Center, New York City 2 University of Texas M.D. Anderson Cancer Center, Houston 3 Mayo Clinic, Rochester, Minnesota 4 Dana-Farber/Brigham and Women's Cancer Center, Boston 5 Johns Hopkins Hospital, Baltimore, Maryland 6 University of Washington Medical Center, Seattle 7 Massachusetts General Hospital, Boston 8 UCSF Medical Center, San Francisco 9 UCLA Medical Center, Los Angeles 10 Stanford Hospital and Clinics, Stanford, California 11 Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia 12 City of Hope, Los Angeles 13 Cleveland Clinic 14 New York-Presbyterian University Hospital of Columbia and Cornell, New York City 15 University of Colorado Hospital, Denver 16 Moffitt Cancer Center, Tampa, Florida 17 Northwestern Memorial Hospital, Chicago 18 Seidman Cancer Center at UH Case Medical, Cleveland 19 Fox Chase Cancer Center, Philadelphia 20 Wake Forest Baptist Medical Center, Winston-Salem, North Carolina

 

http://www.medscape....warticle/828249

 

We've been to all of the "top cancer hospitals" in our area, they don't have time for CML people who just take a pill and live on, their hands are full.

 

Dr. Druker out in Portland Oregon, he would be the guy to see if he is still seeing people these days.

 

Fred Hutchinson Hospital out in Seattle, that's where the guys at the top cancer hospitals listed above will tell you to go for a transplant, they used to have some pretty good results numbers.

 

Good luck to your dad, we hope it goes well for him.

 

rct



#11 r06ue1

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Posted 14 January 2016 - 01:30 PM

Wow rct, that is pretty bad, the two hospitals I live near are both in the top 20 (Cleveland Clinic and UHC) and they both do plenty of transplants and I stayed on the same floor with some of those patients during my short stay at Seidman.  I know there are more serious cancers out there but I know for a fact UHC takes care of their leukemia patients very well and treat it as a serious disease which it is, I'm guessing that the Cleveland Clinic does the same.  

 

Anyways, hope all works out for you and your Father Courtney.


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


#12 mlk210

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Posted 14 January 2016 - 10:53 PM

Courtney,

I'm sorry to hear about your dad. I'm not too far away from you. Across the border in IL. GO BADGERS. My husband is an alumni of UW, too. I go to Northwestern in Chicago which is #17 on the list above to be treated for my CML. I've had nothing but great experience there and it wouldn't be too far for your dad to travel.

 

Also, I emailed Dr. Druker when I got diagnosed with thyroid cancer after CML and he got back to me quick (I believe the same day) with some advice on my treatment. Maybe give that a try.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#13 r06ue1

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Posted 15 January 2016 - 06:24 AM

Would ABL001 be worth a shot?  I know they were using it on some accelerated patients, not sure about blast.


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


#14 WiscoTex

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Posted 17 January 2016 - 02:24 PM

Courtney,
I'm sorry to hear about your dad. I'm not too far away from you. Across the border in IL. GO BADGERS. My husband is an alumni of UW, too. I go to Northwestern in Chicago which is #17 on the list above to be treated for my CML. I've had nothing but great experience there and it wouldn't be too far for your dad to travel.

Also, I emailed Dr. Druker when I got diagnosed with thyroid cancer after CML and he got back to me quick (I believe the same day) with some advice on my treatment. Maybe give that a try.



#15 WiscoTex

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Posted 17 January 2016 - 02:27 PM

Thanks for your response! I'm in Dallas but went home to Wisconsin to spend time with my dad and we are watching the Badger game right now!

I think it would be a good idea for me to reach out to Dr. Druker. My parents are very hesitant to go anywhere but Wisconsin for treatment. It's hard to push the issue as their daughter.

Thanks again! Go Badgers!

#16 WiscoTex

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Posted 17 January 2016 - 02:27 PM

Would ABL001 be worth a shot? I know they were using it on some accelerated patients, not sure about blast.



#17 WiscoTex

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Posted 17 January 2016 - 02:27 PM

I have looked into it but it didn't look like a great option for my dad. See Trey's information in this post. Thank you though!

#18 WiscoTex

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Posted 17 January 2016 - 02:28 PM

We've been to all of the "top cancer hospitals" in our area, they don't have time for CML people who just take a pill and live on, their hands are full.

Dr. Druker out in Portland Oregon, he would be the guy to see if he is still seeing people these days.

Fred Hutchinson Hospital out in Seattle, that's where the guys at the top cancer hospitals listed above will tell you to go for a transplant, they used to have some pretty good results numbers.

Good luck to your dad, we hope it goes well for him.

rct



#19 WiscoTex

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Posted 17 January 2016 - 02:29 PM

Thanks rct I will look into other places. Ultimately it's up too my parents which can be tough.

#20 WiscoTex

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Posted 17 January 2016 - 02:29 PM

Hi. I know of one CML'er that needed a transplant - in fact, he had 3 within a year. Last I heard, he was doing well. His name is Brandon. You can probably find him on the transplant board and send him a private message. I don't know though, if he still comes on or how long it will to get a response.

Good luck and best wishes for your dad.







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