9 replies to this topic

[ceg3284]

My husband was dx in 12/10 with PH+ CML, he never gained remission with Gleevec or Sprycel, and we went for a stem cell trasplant consult last month, on 8/3 his dr locally called and said pathology had found blast cells in his blood during his routine weekly CBC, they admitted him that day, and 8/4 started Cytarabine and Idarubicin, he finished Idarubicin on 8/6 and Cytarabine on 8/11.  Monday he had a bone marrow biopsy and the chemo didn't have any effect on his bone marrow, hes still at 97%, which is what he started out at during dx, the lowest he has been is 37%.  It did reduce the blast cells in the blood to 0.  His Dr is going to start Tasigna and treat with that for now, bc she said that another round of chemo would be too harsh.  His WBC is 1.0 as of this morning his platelets were 12 before he had a transfusion this morning. We also are currently waiting on a match for stem cell transplant.  I talked to the coordinator on the phone earlier and she said it could be in as little to 4-5 weeks, she found 22 matches and is testing the best 3, and is expediting as much as possible.  He also is still testing negative for any type of resistant mutation.  Does anyone have any insight on any of this?  Any help, thoughts, or experience would be appreciated!

[Happycat]

Hi,

No great insights. Clearly gleevec and sprycel are not working for him. I'm a bit surprised they haven't found any mutations. How high we're his blasts in his blood?  I'm a bit surprised they didn't try a different drug first, unless his blasts were just too high that they felt they couldn't wait. Did they check for any other chromosal problems?  Sometimes they find people have "clonal evolution", which I think just means something else goes wrong with the chromosomes. Sometimes people get a 3rd copy of chromosome 8, sometimes parts of other chromosomes get deleted, etc.

Did you try the transplant boards?  You might find someone with CML who had a similar problem and went on to transplant.

I hope all goes well. I'm sure it is a scary time for you both.

HTH,

Traci

[ceg3284]

Traci-

     His blast counts were 23%, and the week before were 0, we thought that was perhaps why his dr wanted to get him admitted and on chemo so immediately.  As far as checking for any other chromosomal issues, I hadn't thought to ask that and no one has said.  So thank you for putting that question in my head   I haven't gotten to any other boards yet, I just joined today and this was my first stop/post.  Thank you for the reply though, and the help!

Cody

[Trey]

The BMT seems to be the right approach.  You may want to read this:

http://community.lls.../message/101607

[ceg3284]

Trey-

     Thank you for the link, it provided an immense amount of very useful information.  Our main concern right now is timing, and hoping that our transplant center can get the match complete and works up, etc before the blast cells return to blood.  We have no idea if the tasigna will work to keep them at bay until transplant.  We are very hopeful, but his failures with gleevec and sprycel make that difficult at times. 

All the best

cody

[Happycat]

Cody,

Wow, that's a fast increase!  No wonder they went straight to chemo. Makes perfect sense. Reminds me a bit of BJ. He had a similar situation. One week he's fine, next week in blast crisis. His mother, Pat, keeps a caringbridge site to update his progress and gets on here occasionally. He's going to the Cleveland Clinic.

Traci

[CallMeLucky]

I don't have much to offer accept wishes for good luck.  I'll also throw in the typical question regarding if you are working with a CML specialist.  CML Blast crisis is a tricky thing and if you have not consulted with a good CML specialist you should try to if possible.  I would also ask about trying to get access to ponatinib.  ponatinib is a 3rd generation TKI drug that has shown to be helpful for people who have not responded well to the 1st and 2nd generation drugs.  It is still in trial, but you can get access to it if you meet the criteria.  It may be worth looking into.  If nothing else it could potentially keep his CML under control until BMT.

All the best.......

[ceg3284]

Traci-

     Do you know what type of treatment BJ is on?  I'm very new to this site so I'm not familiar with anyone yet....I hope to make some good connections on here though.

all the best

cody

[ceg3284]

Lucky-

     I am not certain there are any CML specialist in our area, as odd as that is when I think about it.  We live in "chemical valley" and there certainly are no shortages of oncology doctors around here.  I will definitely be looking into finding out though.  I have a couple of family connections in other states at reputable oncology centers and I am hoping to get one of those to take a look at his medical records just to assure us we are doing the correct thing.  Ponatinib I had not yet heard of. I honestly have done some research since he was diagnosed in 2010, but at that point I look back and see we were too comfortable and confident this would be a easy fix, and well it has turned out to be the complete opposite.  So just recently I have started what I consider to be actual research.  Thank you for the ponatinib suggestion, I will definitely be asking and looking into that asap. 

all the best

cody

[Happycat]

Cody,

Over in the search box at the top right, type in BJ as a search term. You will see a message link pop up "BJ's transplant progress". There's a link in there to his caringbridge site. His mother writes it and gets on here now and then. Anyway, you can read through the journal to see how things have gone for him. He had a surprise relapse, more like a spread from CML to lymphoma, or at least, the cml turned up in his lymph nodes. It's  kinda odd and I don't quite understand it.  My recommendation is to start at the beginning of the journal. That's the best way to figure out what his treatment has been.

HTH,

Traci

P.s.  There is a way to add the link to the message in this message, but it doesn't seem to be supported with an iPad. At least, it's not jumping out at me.