7 replies to this topic

[btbing@q.com]

So my heart is breaking right now.  My daughter was diagnosed with AML leukemia at eighteen months old.  She endured five rounds of chemotherapy treatments over five months, two inductions followed by three consolidations.  Weeks after being discharged from her five and a half month hospital stay, she was diagnosed with chemotherapy induced cardiomyopathy. Two weeks before her third birthday she received the gift of life, a new heart.  She did well through the first year following her heart transplant, recently her white blood count started to raise.  It went from 13,000- 83,000 in about five months.  As her white blood count started to raise, the transplant team watched her for rejection; the oncology team continued blood smears and flow cytommetry; and infectious disease checked her for  every known pathogen.  Last week she had a bone marrow biopsy, she was positive for the Philadelphia Chromosome.  She has been diagnosed with CML.  My heart, is broken.  My daughter turned four years old in April.  They are trying to get insurance to approve her for a medication (can't remember the name), but I know it is not Gleevac.  The goal is to get her into remission in three months, or go straight to bone marrow transplant.  She is obviously a very unique case, she is already taking a whole mess of anti rejection medications which she just recently stopped throwing up on a daily basis from.  After going through treatment of AML, I have been told this will be a lot easier.  After reading the boards, I feel like this may not be the case.  AML was a grueling horrible battle, please someone tell me this will be more manageable.

Mother of MaryOlivia AML and CML warrior extraordinaire

Taber

Additionally, I have been told this is a totally new leukemia.  It is not a relapse of AML or a manifestation of AML. 

[TeddyB]

So sorry you have to go through all this.

I cant help you much, but there is a facebook group for children/parents of children with cml, and ive also found this thread earlier if you want to have a look at what other parents with children who have CML say.

https://www.facebook...421574/?fref=ts

http://www.newcmldru...or-advices.html

Also some resources here: http://www.cmleukemi...n-with-cml.html

Someone from this forum with a bit more knowledge than me, is sure to answer here soon aswell.

Unfortunately those links are all i can help with, i wish you and your daughter the very best of luck.

Teddy

[Trey]

Your daughter will likely start taking one of the following drugs: Sprycel, Tasigna, Bosulif, or Iclusig (Ponatinib).  All are CML drugs in addition to Gleevec.  Each has its own somewhat unique characteristics, but each is designed to shut down the leukemic Philadelphia Chromosome process which causes uncontrolled growth of white blood cells.  They are effective in up to 95% of CML cases. 

Most CML patients would expect to only use  these CML drugs, and transplant is used as a last resort in a very few cases.  If your daughter's battle with AML is over as the doctors suggest, then her CML treatment should be the same as anyone else.  You said her doctors want to see  "remission in three months, or go straight to bone marrow transplant".  I do not see any rush to make a transplant decision.  The drug should be allowed to do its job, and 3 months would be a minimum amount of time.  With CML, the term "remission" means different things to different people.  Almost no one is completely free of all signs of CML after 3 months, and many are not after several years, so that is not the actual goal.  The goal is some level of control over the level of leukemia for CML patients, and your daughter should not be treated any differently.  So be prepared that your daughter will remain positive for the Philadelphia Chromosome for possibly quite a long time, but that is OK.  Most CML patients control the CML, but do not eliminate it.  In this way the treatment program is different than for AML.

You can read some more detailed introductory information at the link below, and please feel free to ask many more questions.  We are here to help.

http://community.lls.org/docs/DOC-1271

[Susan61]

Hi:  I am so sorry for what your daughter has had to endure, plus what the family has gone through with this little girl to get her well again.

Trey explained everything to you very well.  CML is very treatable in most cases.  So keep that in mind.

My heart and prayers go out to you and your daughter.

   As an adult with CML, and the fact that it is so treatable I was diagnosed in 1998, and did not do a BMT.  I have been on Gleevec now for 12 years, and have gotten a very good response.  Like Trey said, it should be no different for a child to do well.  You do have other problems, but they will do everything they can to get her onto something soon.

Susan

[CallMeLucky]

My only advice is to consult with a CML expert.  Do not assume that the doctors that treated your child for AML are the right doctors to treat CML.  they may be, but you should get the opinion of someone that specializes in CML and determine if they concur with the treatment plan you have been given.  I am sorry for what you have had to endure, I wish you the best of luck.

[Pin]

Hi Taber, I am so sorry that you now have this on top of what you have already had to cope with for your little MaryOlivia. I actually am familiar with your caring bridge blog as a friend's daughter was diagnosed with AML last year at 18 months and I came across your site whilst I was looking for information so I could understand better - I have been checking in every now and then and had hoped that since you hadn't posted in a while that things were looking ok. I am sad to hear this is not entirely the case. People here are incredibly helpful and knowledgeable about CML and you have already been given some good advice. Please check in here when you need advice or support, we are here for you.

[btbing@q.com]

Trey,

Thank you for your very insightful response.  From what I understand, my daughter is being treated more aggressively because in addition to Sprycel she is also on life long immunosuppressant medications for her solid organ transplant which suppress the production of lymphocytes, which also places her at high risk for MDS, PTLD, lymphoma, etc.... Additionally, she has her AML history.  The CML is likely not a result of her AML history, but the immunosuppressives; however, if there is any resistance to Sprycel or any medication interactions since she is so young transplant is a feasible alternative and possible cure.  Most people are unaware, but heart transplants only have a life of 10-15 years on average.  If my daughter has a malignancy she is not a candidate for another heart transplant.  We were very fortunate that she was place on the UNOS transplant list only being in remission from AML one year.  Thankfully, she only waited 8 days for a new heart.  So you can see, she is not like everyone else, she has extenuating circumstances which make her case more difficult to treat.  I so appreciate all the comments as they help me to understand this disease better.

Taber     

[Trey]

There is no simple answer.  Let us know how she is doing along the way.