3 replies to this topic

[kmazz99]

Hi...new here and will try to make this brief. My 66 year old mom has been suffering from CML for 13 years now. Living with but often suffering from. She had other issues in between that left her walking with a walker, not getting around at all like before, dizzy etc. She has dealt with them. She has been to various hospitals and centers and been on Gleevac (forgive spelling on some please) , Sprycell, Hydorxorea, Bisutunib and Tasigna over the years. About 6 months ago she had a hemoglobin of 12 which was unheard of for her. She has been down to a 4 in the past and felt very sick obviously. She had countless transfusion over the years because of hg dropping every month or so. But somewhere a few months ago something changed. She had severe bone pain and was in an out of a couple hospitals with tests. About 3 weeks ago we were told she was in blast crisis. Blood revealed 60% blasts. She couldnt get another bone barrow biopsy bc pain was so bad in hips. (she had one several years ago). That pain subsided over time and she went for follow up two weeks ago but in a hurry because she was feeling horrible. Her hemoglobin was a 3.9 when she got there. They got it up to 8...did biopsy and discharged. She went home and back a week later for follow up. Down to 5.7. We went yesyerday for dreaded bone marrow results. Good and Bad. Sprycell worked better this time. No more blast crisis. But Myelofibrosis on top of things. Said her new low hg would probablt be around 6. She is choosing to wait til Tues for another transfusion. Not sure if eligible for transplant...and not sure she would do it knowing the risks etc. What will happen now? Will she just live off transfusions and meds to prevent or help wit iron overload for the rest of her life? Will this shorten life even more? Its back to C<L with this....we thought we'd lose her in blast phase...she comes from that and now this. How long can someone live off transfusions?

[Trey]

This is a complicated issue.  It is likely she was not taking the Sprycel regularly because her blood counts were so low.  This lack of regular drug intake would have allowed the disease to progress to advanced stages.  She did OK for 13 years but struggled to stay on the drugs.  Once the disease advances it is often more difficult to control.  Sprycel may have brought her back from Blast Phase symptoms, but it is possible that it may only be temporary if the disease has transformed to Blast Phase.  But there is also the possibility that she could remain on Sprycel and do OK.  No one can tell which will happen, only time would tell.  But you know the transfusions and other low blood count issues would continue.

 

Most Oncs would suggest a transplant at this point if she can handle it.  Her age is an issue and any other health issues such as heart or organ problems would decrease odds of success.  Transplant at her age and condition would be a difficult process with lesser chances of success.  This also depends on donor availability and type of donor, with any siblings being the highest odds of success at her age, if siblings would even match (25% chance for matching for each sibling).  A transplant Onc would need to assess her situation. 

 

It is not an easy decision.  I would suggest having any siblings typed for possible transplant donor matching.  After that it would depend on what the Onc suggests.

 

You can read about transplant here:

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

[CMLParent]

Hi Kmazz,

 

 So sorry to hear about all of this. Was it myeloid or lymphoid blast crisis? You said in 3 weeks she went from 60% blasts to 0? Did they measure this by MRD? Have you received what the PCR was on that most recent bone marrow?

 

If she is, in fact, MRD negative on the blasts then she has been returned to what is called the 2nd chronic phase or as some would call it blast crisis in remission. This phase is temporary for most people even on a TKI which is why transplant as Trey mentioned is the convention with CML in the 2nd chronic phase. Transplant is obviously a very intense treatment and you would need to consult with a transplant onc to go through all of the options for her. There are reduced intensity conditioning regimens that could be an option. The hemoglobin is tricky. There is obviously some underlying issue in the marrow with the myelofibrosis and that was likely worsened by the acute leukemia. The stem cell transplant would give her an entirely new immune system and could also be a cure for MF. I think the very next step is HLA typing and a consult with a transplanter

[r06ue1]

If she can't handle a transplant due to age and health, might ask about a trial.