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Slightly enlarged left ventricle


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#1 MichelleH

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Posted 02 August 2012 - 07:19 AM

We received a call tonight from the oncologist to say that Kayne's (6 years old) pcr results were very good.  Last quarter they were 0.009 which was the best they had been.  Tonight she said they equivalental or something like that. We didn't talk about it much because she then went on to say that the annual echo and ECG Kayne had in July have both reported a slightly enlarged left ventricle.  Kayne is scheduled to see a cardiologist and repeat the echo and ECG at the end of the month.

Does anybody know much about  enlarged left ventricle? Is it treatable? Is it dangerous? Will Kayne have to go off dasatinib (he has already tried imatinib)? What will we want to know from the cardiologist?

So Shattered! It's feels been nearly 4 years for Kaynes cml and just when it seems like everything is going to be okay, this happens!



#2 scuba

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Posted 02 August 2012 - 07:38 AM

Hi Michelle,

Enlarged left ventricle can be caused by persistent high blood pressure. What is Kayne's blood pressure? Sprycel can cause hypertension:

http://www.medicalne...cles/235800.php

It is very important that his doctor monitor blood pressure as well as lung function while on Sprycel.

It is treatable (but the source of the problem must be identified). Left untreated, hypertrophy leads to heart failure.

Is Kayne sedentary? overweight? or is he active (works hard enough to sweat)? Diet and exercise can have a impact on the heart muscle as well. Losing excess weight alone can help reverse mild hypertrophy.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 MichelleH

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Posted 02 August 2012 - 07:50 AM

No definitely not overweight. He is only 6 years old and just 21.5 kgs.

From the link

"Signs and symptoms of pulmonary arterial hypertension include fatigue, shortness of breath, swelling of the ankles and legs (and possibly other parts of the body), non-productive cough, angina pectoris, syncope, and in rare cases coughing up blood."... None of these signs.

He hasn't had to have a bmb for the last few pcr tests but no blood pressure problems when it was tested for these.



#4 mamawarrior

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Posted 02 August 2012 - 08:35 AM

Michelle, my son was diagnosed with aml at 18, relapsed at 20, had a double u cord stem cell transplant  including total body irradiation and is now being treated by a pediatric cardiologist for anthracycline induced cardiotoxicity. He has had echos and muga scans every 6 mos for the last 5 years.

Make sure you take your echo and ekg reports to the cardiologist as well as a list of any medication your son is being treated with or was treated with that can effect the heart. I am confident they will do another echo in the office as cardiologists have their own equiptment, their owned trained personnel and really dont trust other folks readings. They will view the echos themself and knowing your childs history they can zone in on what problems they may or may not expect.

There is a margin of error because an echo is performed by a person and is at the mercy of the eye of the reader. It is much better to have one done by specialists that are familiar with your child and while the cardiologist may not be familiar with your child at this point, they will do a history and physical, be able to assess your child for anything physical that may alter a reading such as pectus excavatum (Pigeon chest), or anything in their history that can cause a red flag such as particular medications, asthma etc.

Take a deep breath, I hope this is nothing, (i have seen discrepancies) but it is much better for a child of 6 to be followed long term since his little organs are growing and developing and there is concern regarding his leukemia and treatment..

If your child does have a slightly enlarged left ventricle, i doubt that there would be any recognizable symptoms but would be important for a cardiologist to evaluate and follow up on.



#5 scuba

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Posted 02 August 2012 - 08:54 AM

Is there any family history of enlarged heart?

(what dose Sprycel does he take?)


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 Trey

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Posted 02 August 2012 - 09:24 AM

Any time the doctors use the word "slightly" the issue should not be a source of undue worry.  The tests are not so precise as you might think, so it could be inconclusive, or it could be "normal" for that child, or many other issues.  But it should be checked out further, as you are doing.



#7 MichelleH

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Posted 06 August 2012 - 08:18 AM

We have relied on your advise/comments so much in the past so we will hang on tightly to that "slightly" for the next 3 weeks until we know more.



#8 MichelleH

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Posted 06 August 2012 - 08:20 AM

Hi Michael, There's no family history of heart problems.

Kayne takes  50mg Sprycel per day.



#9 MichelleH

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Posted 06 August 2012 - 08:39 AM

Hi mama warrior,  Thanks for sharing and your advice. You and your son sound like you have been through it all.

The first tests were done at the same place we are going back to - royal children's in Melbourne. I will still hope it is some kind of error though. If not, hopefully it isnt anything major and just requires monitoring.






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