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NRk1 TMP3 gene fusion sarcoma

Posted by erickasears @erickasears, Jun 30 2:23pm

My son has been diagnosed with this type of sarcoma . I was wondering if anyone else has been diagnosed or has been treated . I’m lost in this whole process . There really is t a lot of info about this type of sarcoma . Feeling overwhelmed .. pissed off etc. this is his third reacurrance … his last surgery was in Dec 2025 . Just went back for a scan another mass was found around his hip .

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Colleen Young, Connect Director | @colleenyoung | Jul 12 7:18pm

Hi @erickasears, I moved your discussion to the Sarcoma Support Group here: https://connect.mayoclinic.org/group/sarcoma/ to help you connect with others with NTRK1-3 fusion.

Your mentioning your emotions made me think of this related discussion that you might wish to join:
- How do you, as a parent, deal with the anger? Son has sarcoma https://connect.mayoclinic.org/discussion/how-do-you-as-a-parent-deal-with-the-anger/

Such a gut punch for find out that another mass has been found in his hip. As a parent, you just want to take this suffering away and protect your child. I get that. May I ask how old he is? Some cancers with NTRK1-3 fusions are treated with TRK inhibitors. Is that option been discussed for your son?

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erickasears | @erickasears | Jul 15 7:30pm
In reply to @colleenyoung "Hi @erickasears, I moved your discussion to the Sarcoma Support Group here: https://connect.mayoclinic.org/group/sarcoma/ to help you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @erickasears, I moved your discussion to the Sarcoma Support Group here: https://connect.mayoclinic.org/group/sarcoma/ to help you connect with others with NTRK1-3 fusion.

Your mentioning your emotions made me think of this related discussion that you might wish to join:
- How do you, as a parent, deal with the anger? Son has sarcoma https://connect.mayoclinic.org/discussion/how-do-you-as-a-parent-deal-with-the-anger/

Such a gut punch for find out that another mass has been found in his hip. As a parent, you just want to take this suffering away and protect your child. I get that. May I ask how old he is? Some cancers with NTRK1-3 fusions are treated with TRK inhibitors. Is that option been discussed for your son?

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@colleenyoung

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erickasears | @erickasears | Jul 15 7:32pm
In reply to @colleenyoung "Hi @erickasears, I moved your discussion to the Sarcoma Support Group here: https://connect.mayoclinic.org/group/sarcoma/ to help you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @erickasears, I moved your discussion to the Sarcoma Support Group here: https://connect.mayoclinic.org/group/sarcoma/ to help you connect with others with NTRK1-3 fusion.

Your mentioning your emotions made me think of this related discussion that you might wish to join:
- How do you, as a parent, deal with the anger? Son has sarcoma https://connect.mayoclinic.org/discussion/how-do-you-as-a-parent-deal-with-the-anger/

Such a gut punch for find out that another mass has been found in his hip. As a parent, you just want to take this suffering away and protect your child. I get that. May I ask how old he is? Some cancers with NTRK1-3 fusions are treated with TRK inhibitors. Is that option been discussed for your son?

Jump to this post

@colleenyoung yes he was taking Gen 1 drug it worked for 3 years and came back . Had surgery then 7months later came back again they gave him on a Gen2 drug now it’s just hard to understand this type of cancer there isn’t a lot out there about it …

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