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Pediatric CML & Concern about MRD

Hi. I've just signed on to this site. It's difficult to find many places like this in the U.S. that are current. Anyway, my son, age 10, was diagnosed with CML in May 2008. He's had 2 pcr's & rt-pcr's so far. He went from 94.4% Ph+ to 3.6% Ph+ in about 4 months (sorry, we don't use logs in U.S. yet...) Anyway, we were summoned back to the hem/onc tomorrow for further testing. It may be that my son has MRD (minimal residual disease.)

Can that be determined by only 2 pcr's? Is there something in the blood markers that would show that my son will not completely respond to Imatinib?

Any thoughts would be greatly appreciated!

Also, any caregivers of children out there ???? I'd love to hear from you. It's hard to find another 10 y/o with CML, but I think someone out there has an 11 y/o???

Thanks!!

TAD

Hi Tad, and welcome to this forum.
First let me say that I am sorry that your son has CML. It is rare enough in adults but even rarer in children and young people.

However if you look to the left of this page and scroll down a little you will find a direct link to Jayne Listers site especially for children with CML.
Jayne's son Aaron was diagnosed some time ago so she would be a good person for you to make contact with.
There are other carers/parents of children and younger people on this forum and I am sure they would be pleased to make contact with you.

Regarding you question about MRD or minimal residual disease. Most, if not all, CML patients treated with either Glivec or one of the other TKI's (Sprycel or Tasigna) could be said to have MRD.
As none of the drugs is a cure, it follows that even with a complete cytogenetic response to Glivec, there will be a residue of BCR/ABL , even if it is undetectable by PCR (0.0000).

You say your son's second PCR showed 3.6% BCR/ABL. He has had a really good response within a very short period... of course this level is still PH+ so until he gets a reading below 1.0% ( or 0.5% or lower)he will not yet have reached CCR (complete cytogenetic response)...
It is at this point that talk of log reductions usually starts- although the relevance of log reductions is questioned by some CML specialists- but that is for a different discussion ;o)

So really, to answer your question... I don't think that talk of MRD by your sons clinician indicates that he is not responding or will not respond fully to Glivec.
It is really early days yet and he has had a really very good response.

I do hope this is helpful and I hope also that you are able to make contact with other parents/carers- if not through this website then through one of the many others listed on our LINKS page.

Best wishes,

Sandy

Thanks so much for all the helpful information in your reply. It is very comforting to communicate with others in this situation.
Thanks again!
TAD

Tad

My young son was diagnosed with CML at the age of 10. That was five years ago. As Sandy has suggested you may wish to post on the children's CML where you may find that you connect with other parents who are also supporting their children through post bone marrow support or drug therapy

Best wishes

Parmjit

It's so good to finally hear from someone with a child with CML. The forums on the children's site are a little bit old, though I've tried to make contact.

Anyway, the hem/onc feels that while my son, Ben, has made good progress, he's concerned that he hasn't had a complete cytogenetic response yet. Because my son had side effects from Gleevec, he's been switched to Sprycel (instead of raising the Gleevec dose.)

I'd like to inquire - if you don't mind - how you dealt with CML with your son. As the only cure is BMT, I'd like to know when you may have discussed that issue with your boy. Right now, my son only knows that he has CML (and what that is in his blood) and that he must take medicine for some time. He also knows that his younger brother is an HLA match, but doesn't appreciate what that's for. How do I prepare him? When is the right time? What did you do?

If there's any way you could email me, I'd appreciate it. tadlaw@optonline.net.

Much, much thanks.

Regards,
Tracey (TAD)

Hi, my son was 9 when he was diagnosed. I have to admit that as the information out there was all quite bleak as it was for adults I hid my head in the sand so to speak and just concentrated on living day to day with all the changes my son was experiencing. Two years down the line my son is now on 500mg glivec daily and has touch wood very few side effects. He has very dry skin on his face and we try different creams from time to time to see which is better. He has just started secondary school and is just about coping, the school are aware of his condition and I have had several discussions with the nurse already, he has not told his class mates as yet as he doesn't want to, to look at him he is healthy and well so its not an issue for anyone else at present. He is aware of the need for a bone marrow transplant at some stage but as new treatments are being discovered maybe they will find a cure. We live day to day, because he is tired today doesn't mean he will be tomorrow although sometimes I wish he was. he loves sport, goes kick boxing twice a week and has just started rehearsals for the village panto. Every child is different so don't make too many comparisons.

Julie

Dear Julie,

Thanks so much for your reply. You know, the issue with school is a big one for us too! In our case, Ben was diagnosed last year when he was preparing for an elective surgery on his Achilles Tendon. His classmates were prepared to see him return to school with a cast on his leg.

So, when he didn't come back to school for 3 weeks and without a cast, the class had many many questions. They knew that something happened. After discussing this issue with Ben's teachers & the nurse, we agreed that the kids would be told that Ben had a blood disorder if asked. That satisifed Ben.

It's difficult for Ben to understand this disease. Like most children with CML, he appears quite normal, especially since the medicine has worked (so far and knocking on wood!!) The problem arises when his doctor doesn't want him to participate in contact sports until he's further in remission. Or when he's permitted to leave class suddenly to go to the nurses office for some Motrin or if he's fatigued. How does a child explain this to other kids?

I'd like to keep in with you and your son during this process. Perhaps we could email each other from time to time. I'm at tadlaw@optonline.net.

In the US, Fred Hutchinson is the place for a pediatric bmt. I'm going there for an initial consult mid-October. I'm also meeting Dr. Druker in Oregon at that time. I'm looking for the latest treatment information available.

I'm interested in finding out more about vaccine therapy and even the use of a mini-bmt. Let me know if your interested in learning more about this stuff too.

Best wishes. Keep strong. Keep the faith! Keep our Kids Ph Negative while always remaining POSITIVE.

Regards,

Tracey