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14 yrs old diagnosed CML 12/24/2010 and the progress so far and my questions are....

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#1 fychien@yahoo.com


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Posted 03 March 2011 - 03:34 PM

My son was diagnosed on last Christmas eve and did a BMB and BMA on 12/30 to make sure it is CML. He started Gleevec with 600 mg daily from 12/30/2010. The doctor saw us 12/24/2010 and told us it is CML but will do the marrow to make sure nothing else. She told us that the potential treatment would be one BMB and another one a month later and then 3 months and 6 months later. I did not know anything to look for when my son was diagnosed at that time since I have the slightest idea about anything. So here is the treament and progress so far and I have questions later if anyone can help.

             Date                             WBC                   RBC                       HGB                            Platelet

12/30/2010151.85.8511.6starts Gleevec 600 today  727

Start taking Gleevec 12/30/2010 with 600 mg daily dosage. He got nausea and vomited several times to start the medicine. From 12/30 to 1/27, he throws out, I would say about at least 5 times. When the lab result is out on 1/27, the team doctor (not my son's doctor) is kind of surprise to see a very good progress with ANC 920. I asked if we can drop the dosage to 400 mg and he calls our doctor and the doctor wants us to keep the same dosage. I looked at the WBC which is too low from my thought and somewhere I read that Gleevec could cause all blood counts to drop too low. Therefore, we reduced the dosage and my son skips about 5 days of taking medicine out of 14 days before the next doctor visit on 2/10/2011. So the result of 2/10/2011 is showing a very good improvement and the ANC is 2160. We did not tell the doctor that we skipped so much medicine and just told her that my son forgot to take about 2-3 times instead of 5. She wants to keep the same dosage of 600 mg. She wants to discuss to have another BMB and BMA and I asked her to do another later in the summer. But she insisted that it has to be done within 3 months after the first BMB. The reasons she gave me is not convincing.

So, I do a lot of researches and found lots of great information here. As the NCCN recommends for 6 months to do another BMB, I don't know why the doctor wants to do it in 3 months. I want to convince her not to do it so soon but on the other hand that I don't want to upset her too much with my personal opinion. She did not really comment much on the 2/10/2011 report as I viewed it as a very good progress. So from the progress, is my son in the HR? I don't see the PCR testing being done, should I ask the doctor to do that?

Since the diagnosis of CML, my son has changed a lot to a better life style as he did not want to before this health's issue, so this is somehow a good news. Now, he is eating more than 80-90% plant based and no more junk food. He also eats fruits, freshly sprouts, whole grain rices and vegetables. No more soft drinks and sugar. He also drinks around 2 oz. of fresh wheatgrass juice almost every day. And he enjoys with the changes. I see that he is having good appetite and good energy and I can see he is doing much better from the appearance of his face. He is just like a healthy young adult but has the nausea issue with taking Gleevec and he found out to take the medicine before bed helps.

So, my questions are, is it too soon to do another BMB where I don't see reasons to do that if we can do the PCR or FISH on blood. Is my son in the HR this stage? He will have another appointment on 3/14 and the doctor wants to tell us the next BMB at that appointment. Please comment on the progress of my son's treatment or any other inputs will be appreciated. Or does anyone has information regarding to more holistic way to deal with this health issue? I am learning. Thanks.

#2 Trey


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Posted 03 March 2011 - 09:46 PM

Your son has made good progress and has reached Complete Hematological Response (CHR).  And you have researched well.  Here are my comments.

600mg Gleevec is too much for a 14 year old boy.  He should not have any more than 400mg per day.  I would recommend taking 200mg twice per day (morning and evening) to have less nausea.

You should ask your Oncologist the following questions:

1) Does my son have any high risk factors that would require 600mg Gleevec instead of 400mg, or a BMB more often than NCCN recommends?

  a) If "No", then dosage should drop to 400mg.  The BMB can be at 6 months, but unless the pain and trauma are an issue, it is not a big issue.

2) Has a FISH or PCR been done?  If "yes", what are the results?  If "no", why not?  He needs to have regular FISH or PCRs done (every 3 months at this point).

He seems to have a good attitude, so that is very good.  The eating changes are helpful.

Regarding a more holistic approach, Gleevec is the right way to treat the CML.  Otherwise, a healthy lifestyle (eating well and exercise) is helpful.  Vitamins (a good multi-vitamin and extra Vitamin C) are also good.  Taking the Vitamin C along with the Gleevec helps the body absorb the drug since Gleevec absorbs better in an acid environment.

Your son is doing well, and will live a mostly normal life.

#3 fychien@yahoo.com


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Posted 03 March 2011 - 10:34 PM

My son is actually taking 400 mg now and the doctor does not know about this. I asked her why she prescribed 600 mg and her response was that this is the way that is done here in Austin, Speciality for Children in the Dell children's medical center. I will ask her if we can have the medice twice a day instead of once to see if it reduces the nausea issue.

I asked them to give me a report of the BMB but there was no explanation from them and I have read it many times with serveral questions. I plan to call the nurse to see if they can help explain to me. I only see the FISH and it indicates BCR/ABL fusion in 97%. And don't see the PCR.

My plan is to ask to do PCR with blood in the next appointment on 3/14. I will ask the doctor to do it from blood instead of marrow so that I can see the trend from the blood every three months instead of from marrow or blood which is not a good idea since the baseline is different. As I read from your post that the result from PCR either from BM or Blood is comparable and other articles I study also say so.

Last time the doctor told me that she can't see much from the blood report and want to check with BMB to have a much precise information. I don't want to do BMB is because of it is still an operation and they put my son to sleep which is good so that he does not feel pain but I don't want him to get too much drug on his body because of the operation as I see all the medicine carries side effects one way or the other. And it was a heart broken scene last time he was walked by doctors to do the BMB and we could not be at his side. He told me that he was also terrified. So unless it is necessary, I will evaluate the pro and cons of a day surgery to justify yes or no.

Thank you for your valuable information and I will bring your questions to the doctor next time.

#4 PhilB


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Posted 04 March 2011 - 02:13 AM

While 600mg does seem very high if he was dx in chronic phase (is there a blast percentage on the bone marrow report?) I have to say I'm very alarmed that you are not being open with your doctor.  If you don't agree with the way the doctor is treating your son, then by all means change to a different hospital / doctor, but please don't just do your own thing without telling them.

Reducing the dosage to 400mg and splitting it into two doses seems sensible if he was dx in chronic phase.  Skipping a third of your doses entirely does not, especially if he may have been throwing up part of the doses he does take.  The marginally low counts he had are nothing out of the ordinary and you want to be sure that the rise back to normal range is down to his healthy cells recovering, not to insufficient Gleevec to treat the Ph+ ones.

No amount of healthy eating will make any difference to your son if he isn't getting an appropriate dose of a TKI.

#5 Trey


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Posted 04 March 2011 - 09:34 AM

Here is a reference to use when talking with the Oncologist.  It says that the recommended daily dosage for children is 340mg per day, with a maximum dosage of 600mg (which should not be used as the initial dosage for children without a very good reason, such as a high risk factor).  Since he is 14 years old, he can certainly take 400mg rather then 340mg:


#6 CallMeLucky


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Posted 04 March 2011 - 01:54 PM

Hi and sorry to hear about your son's diagnosis.  I think Trey is your man for the facts and he has already given you some good stuff.  I think it is impressive how much you have learned about your son's disease.  The only thing I would add, is that if it were my child (or in my case I did this for myself) I would ask the doctor what their experience is with treating CML, how many patients they have with CML and in your case, how many adolescents have they treated.  If your doctor is not a CML specialist, I would seek out a second opinion.

It looks like he is doing good so far and I hope he continues to do well.

Also 14 is a tough age because while he is still a child, but he is getting to border line adulthood in some ways.  Some people find a BMB to be very difficult and painful, others not so much.  You may want to explore if the full sedation is required.  I think you would have to talk to him about it first and get his thoughts on it, but if he is willing to try, you might be able to do it with conscious sedation.  It is still a drug, but not as bad because they shouldn't wouldn't have to intubate him.  I would expect under that scenario, you would also be able to stay with him.  I'm not sure what the hospital's protocols are for children as they differ from adults, but it may be worth asking and if not for now, certainly in the next couple of years as he gets a little older.  Of course by then he should be on PCR monitoring with low to undetectable levels

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#7 fychien@yahoo.com


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Posted 05 March 2011 - 10:06 PM

You are the man. I will take that info to discuss with the doctor.

#8 jjubin


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Posted 06 March 2011 - 06:31 PM

Welcome aboard.  Sorry to hear about your son.  My daughter also was diagnosed at 14--2 weeks' after her 14th birthday.   I can offer a bid of information.  My daughter was placed on 400MG of gleevec and had a really good outcome like your son.  Gleevec is a miracle; although it does appear to make people feel ill as well.  There are very few kids with CML so it is hard to get information, so I experimented a lot with my daughter.

One thing I never changed is the fact that she takes her meds every day.  We played around with her when she was taking her medicine and found night time the best.  About an hour before she goes to bed with lots of snacking.  If she takes it to late, she is very tired, can't sleep, and doesn't feel her best in the morning.

As for BMB I too questioned things, but can tell you they did a BMB on her  3 times for 3 months.  She had such fantastic results that this April will be her first BMB since  last year April.  They check her blood every 3 months for PCR and we keep in touch with the bone marrow transplant team yearly so they can keep tabs on her in case she would need a BMT.  As long as Gleevec or the medicine works, that's what they want to keep doing.

I know my daughter often wishes she could talk to others her age that had this because she finds she lives a kind of normal life, but they are still not like everyone else.  They have good days and bad days, like others taking chemo.  If you'd like to talk, I'd be more than happy to share our information we have.  My daughter Nicole will be going to Children's in Milwaukee in April for her BMB--she is put out, I don't like it either, but would rather her not feel any pain.   Just want to say my daughter will be 151/2 this month and is still doing great on Gleevec (hope this keeps up)--she just received her temps so that's the next thing I need to sorry about.  LOL.

Good luck and you AND your son are your advocates, speak up and don't be afraid to get a 2nd and 3rd opinion.  Just don't go skipping doses because the BMT team said that is how teens end up in BMT.

#9 Stevea


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Posted 07 March 2011 - 10:52 AM

When I was diagnosed, they had my taking 800mg of Gleevec for a while (maybe a month) then 600mg for another month or two before I started taking 400mg for the last 8+ years.  While either taking the 800 or 600 my other counts got so low that I needed a blood transfusion.  So I would think that 400 would be good for your son.

I was also deal with nausea and vomiting until I realized I wasn't eating enough food with Gleevec, as soon as I ate a bigger meal with my pill then the nausea and vomiting went away.  It's has been at least 5 years since I threw up because of Gleevec.

#10 Susan61


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Posted 07 March 2011 - 01:30 PM

Get That second opinion from a CML Specialist to be sure your son is getting the correct treatment.  Trey has studied everything there is abou CML since he was diagnosed, and he knows more than the doctors on a lot of the things we should do and look for. 

I had a great doctor for my CML since 1998, and when he retired they gave me to a doctor who did not know enough about CML for me to feel confident in letting him treat me.  I moved on to get another doctor.  I always say if it does not feel right then its not right.  I hope you get some answers real soon, and glad your son is doing good.

#11 fychien@yahoo.com


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Posted 08 March 2011 - 09:57 PM

Thank you for giving me many good information here. There are also private messages sending to me offering ideas. I am very grateful to all of you. I will take my son to the next appointment next Monday on 3/14. Hope he keeps on improving his progress.

#12 fychien@yahoo.com


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Posted 09 March 2011 - 08:49 AM


   Regarding to the CCR, I know that there is a convention (old) way to do this but the cells count sample are pretty low (20 of cells) from the bone marrow. FISH is a more effective way to check for CCR. And FISH can be done either from bone marrow or blood. For the CMR, PCR is the way to go. PCR can be done either from the bone marrow or blood. Is this correct?

   If my knowledge is correct, it is not necessary to check CCR or CMR from bone marrow and they can be done from blood, right? So, what are the main reasons to check bone marrow instead of from blood?

   Also, can we specify the sensitivity of PCR testing before sending off to the lab? Does more sensitive checking require more blood draw? What kind of sensitivity should I talk the doctor to do? I learn some are checking one out of 10K, 100K, even I read somewhere 100M cells. Please enlighten me if possible.



#13 Trey


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Posted 09 March 2011 - 09:53 AM


Your first paragraph is correctly stated, except that the FISH is not "more effective", just less painful.  BMB and blood FISH are generally comparable in determining CCyR.

PCR using blood is fine for determining minimal residual disease (MRD) status, whether 3 log reduction, CMR, etc.  Lab selection is not an important issue any more since all reputable labs use very good equipment and reagents now.

The reasons for checking marrow are:

1) Diagnosis:  A check of the marrow gives in-depth visual evidence of possible high risk factors, such as secondary chromosome mutations, high blast count, fibrosis, etc

2) Early progress review: At 6 months a marrow review shows whether good progress is being made, especially on any high risk factors.  It also looks for secondary mutations that might show up after treatment has begun (rare).  The slower the progress with drug treatment (shown by blood FISH) the more important a 6 month BMB is.  If blood FISH or PCR shows rapid CCyR, the 6 month BMB is far less important.  After CCyR a BMB is probably not very useful unless to check on any previously noted high risk factors.

3) Significant change upward in PCR (greater than 1 log increase AND loss of CCyR) at any time during treatment.  The marrow should be checked if sudden and significant loss of drug response occurs.

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