You are here

Blast Crisis CML

Categories:

Hi there,

My dad was diagnosed last July in chronic phase CML.  He was fine for about 4 months while on Glivec, however in about 3 weeks he advanced to blast crisis CML.  He is now on Sprycel and has extraordinarily low neutrophil counts (0.3 k/Ul), hemoglobin and RBCs while on Sprycel.  A couple weeks ago they took him off of Sprycel (140mg) for a week and a half.  In just 5 days he went from 4,000 WBCs to 34,000 WBCs.  Since his WBCs increased so rapidly they put him back on 140mg of Sprycel.

I am wondering if anyone else had any of the same issues above or suggestions on getting treatment for blast crisis CML.  We are hoping one of his siblings is a 100% match for a bone marrow transplant but we won't hear anything for a couple of weeks.  My dad is 56 and overweight, so we are hoping that he will even be a candidate.

Also, if anyone knows of any clinical trials that would be helpful as well.

 

Thank you for your time and responsiveness in advance!

Courtney

The forum has been unusually quiet and I'm thinking it's the normal post Christmas thing.  I'm confident others will see your post and reply shortly though.  In the meantime I didn't want you to think you were being ignored.

Sorry to hear about your dad.  I appreciate you'll be worried about him.... my daughters were just the same.   Slightly different circumstances but I was diagnosed 22 years ago aged 43 and in blast crisis phase.  That was in the days before TKI's were even available.    I had treatment which is nowhere near of the standard of today's but ultimately went on interferon which helped and enabled me time till they found a matched unrelated bone marrow donor (my siblings were not matches).    In my case because I was so ill and because of the complications of "olden days" treatment, I was hugely underweight.   I had to put on 5 stone at least to withstand the rigours of transplant.  In the event I put on nearly 7 stone and boy was I glad.... I lost that very quickly during the process! 

Ultimately a few years after transplant I went on to imatinib (Glivec) and that held everything back and I went to "undetectable" and am currently in the DESTINY trial and have been medication free for the past 2 months :)

You didn't say where your dad is treated but I'd suggest that it would be a good idea to ask his consultant about such as treatment options and trials.   Of course it would have to be your dad that asks because of such as confidentiality.... but he may want you to be with him and have your support.   I well know there's a bit of a pull between wanting your child to know and wanting to protect them from anything that might be "bad news" or not terribly positive.   In my case my older daughter was fantastic... a real "coper" who was mature beyond her 22 years and practical and realistic and I had little hestitation in knowing it was best for her to know as much (or as little) as I did.   It was also good for me.

 

Hi Courtney,

I am sorry to hear your dad has progressed to acute stage CML (blast crisis). It is rare when effective treatment starts in Chronic phase, but it can and does happen. It may be that he was in a more advanced stage at diagnosis but that this was not clear from the tests his treating hospital would have done. Nevertheless, he is where he is and will need more treatment intervention than most of us. 

It is likely that dasatinib will affect his blood counts quite dramatically- this is because his blood/marrow is populated with more blast (abnormal) cells than normal because the disease is more aggressive at this (blastic) stage. Dasatinib has been used to treat blast stage CML and has shown to be effective in some cases; at least to control the disease while other treatment options are explored. I assume he is in hospital being monitored if his cells are as low as you say- the key here is his platelet count as anything under 20 is quite dangerous as even just a small knock can cause serious bleeding. You did not indicate if his platelets are dangerously low - so let's hope that they at least are above 50. 

I think his doctors will be looking to get him back to 2nd chronic phase with dasatinib treatment at this higher dose (140mg) ... so they can then look for a donor- if his siblings do not match then a search on the registries will be necessary. Unrelated donor matched SCT's are pretty much as good as matched donor SCT these days. There is also a chance of double cord blood as a source of stem cells- although I am not sure which transplant centres in the UK would perform this. 

It may well be that dasatinib will get him back to chronic phase as long as he can stay on the drug without his blood cells staying too low.  His marrow will need some time to manufacture 'normal' blood cells so staying on the drug for as long as possible is key to this. 

There are c/trials for CML in blast stage but you would need to do some research ... from a brief skim of www.clinicaltrails.gov I have only found one that is recruiting and that is outside the UK at MDACC in Houston Texas and is a phase 1 trial which is to determine the safe level of dose and  assess the safety and tolerability of DS 3032b in subjects with refractory or relapsed AML or ALL, CML in blast phase, or high risk MDS..

https://clinicaltrials.gov/ct2/show/record/NCT02319369?term=chronic+myel...

Where is he being treated? I do hope things improve for him regarding his low blood counts which will enable him to stay on dasatinb.... I would have thought it best to reduce the dose rather than stop altogether given he is blast phase.

Please let us know here how everything goes.

Sandy

Sandy,

Thank you for your thorough response to my thoughts.  I have reached out to a few people (an expert hematologist and a blast crisis survivor) who also said they should have tried reducing the dose versus taking him off of Dasatinib.  I will look into the clinical trial you suggest.  His platelets are also low and were 17 on Monday.  He isn't in the hospital and is still working and pushing himself to see friends out for dinner sometimes.  It worries me how much he pushes himself when I know he doesn't feel well and is at risk for infection and bleeding.

I am actually in Dallas, Texas. I did not find any US blogs that were nearly as helpful as this blog, so I appreciate your response to my inquiry.

My parents live in Central Wisconsin and my dad is being treated by a local oncologist and travels to Madison where the University of Wisconsin, Madison is located to meet with his BMT oncologist.

It is extremely frustrating for my family because the course of treatment isn't entirely clear.  From research, I agree that they are trying to get my dad into a second chronic phase and I hope that his blood counts improve.  I encourage my parents to ask questions and get second opinions.  It is difficult because they are trying to shelter me from what is going on to a certain extent.  It is impossible to do this because of the internet.  I think I have been doing the most research in my family and understand fairly well how serious the situation is.

Thank you!

Courtney

Darley,

I appreciate your response.  It is so wonderful to know of another survivor of blast crisis CML.  I am in contact with another survivor who has been extremely beneficial both with coping with my father's illness and providing treatment advice. 

I am hoping he can achieve a second chronic phase and have a BMT.  We are taking it a day at a time as a family, but I worry about my dad pushing himself too much.  He is still working every day in an office environment.  I live far away from my parents however I am fortunate to be able to travel home and my company has actually allowed me to work from home.  I live in Dallas, Texas and my parents live in Central Wisconsin.  I found this blog to be extremely helpful and plan to listen in on the UK webcast Saturday about CML.

Thank you for your support, thoughts and advice.

Courtney

Courtney, first of all, i'm sorry about your dad and i wish very good luck for him. Second: there's a great forum in the US with good people that are able to help you. here's the link:

 

http://community.lls.org/forum/27-chronic-myeloid-leukemia/

Hi Courtney,

My knowledge of US geography is not that good...but MD Anderson Cancer Centre in Houston is one of the premier centres- including for CML and the Acute Leukaemias - it is also a premier centre for stem cell transplantation with some very eminent CML doctors such as Jorge Cortez MD... see this link http://faculty.mdanderson.org/Jorge_Cortes/Default.asp?SNID=0.  However as your parents do not live in Texas you might want to get a second opinion from Dr. Cortez... 

Jorge Cortes, M.D.

The University of Texas MD Anderson Cancer Center
1515 Holcombe Blvd., Box 428
Houston, TX 77030
Office: 713-794-5783
E-mail: jcortes@mdanderson.org

Otherwise, or maybe as well as, you might find the following patient run support group helpful: 

http://www.nationalcmlsociety.org/living-cml/understanding-cml

I understand why your parents are trying to protect you- it is natural, but you are right to find out as much as you can, even on their behalf, as in the end it might come down to your dad choosing to hold his nerve and stick with dasatinib and his local doctors, or getting other opinions for the likes of expert CML clinicians such as Dr. Cortez and others who are based in research centre. 

Survival often depends on getting the right information and that is not always as forthcoming as we would like to think. 

Wishing your father well, and hopefully he will respond well to dasatinib AND his platelets will start to rise soon!

Sandy

^ Couldn't agree more with some of the sentiments expressed in your post Sandy.

 

Particularly  "Survival often depends on getting the right information and that is not always as forthcoming as we would like to think"   To put it bluntly I know darned well I'd not be here today if I'd not been so critically ill at the start and got transported to a specialist centre of excellence.  At the time I thought that was bad luck.  I came to appreciate it was good luck and most fortuitous. 

Hi there i was diagnoses in chronic phase and later develop to bp. I achieve second cp with dasatinib and in cytogenetic remission now. I am about to have my bmt very soon. Hope it goes well and everything will be fine.