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Desmoid Tumor - Proton Beam Therapy Beneficial?

Posted by sds03 @sds03, May 6 3:48pm

Hello. I am beyond frustrated and scared. My daughter has a desmoid tumor; it is in her arm and surrounds her deltoid muscle. We have tried inflammatory medications, nerve blockers, cryoablation and nirogacestat! Her tumor has only grown in size and changed shape, which has tripled her pain. We have been to UofM, Corwell in Grand Rapids and Cleveland Clinic. No positive results, no light at the end of the tunnel. I just saw a story about Proton Beam Therapy, although it was for a brain tumor, because it is so targeted, could it potentially offer our daughter relief?

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Lori, Volunteer Mentor | @loribmt | May 7 8:29am

Hi @sds03 It’s certainly understandable for you to be frustrated and scared about your daughter’s situation. Having this tumor that’s not responding to treatment is beyond frightening. You mentioned the possibility of Proton Beam Therapy.
I do know that Mayo Clinic-Rochester and Phoenix have proton beam facilities. Posting a link to the Mayo Clinic informational page regarding this program:https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/proton-therapy-facilities/gnc-20187682

I think it would certainly be worth contacting them for a 2nd opinion. Here is another link for you to get started with a request for an appointment. You don’t need a doctor’s referral but I’ve heard it can be helpful. Since your daughter’s treatment hasn’t been successful hopefully her doctors will offer their assistance for her referral to Mayo.
Click this link to get the process started: http://mayocl.in/1mtmR63

I hope you find some answers and a cure for your daughter! How old is she?

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sds03 | @sds03 | May 8 9:18am
In reply to @loribmt "Hi @sds03 It’s certainly understandable for you to be frustrated and scared about your daughter’s situation...." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @sds03 It’s certainly understandable for you to be frustrated and scared about your daughter’s situation. Having this tumor that’s not responding to treatment is beyond frightening. You mentioned the possibility of Proton Beam Therapy.
I do know that Mayo Clinic-Rochester and Phoenix have proton beam facilities. Posting a link to the Mayo Clinic informational page regarding this program:https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/proton-therapy-facilities/gnc-20187682

I think it would certainly be worth contacting them for a 2nd opinion. Here is another link for you to get started with a request for an appointment. You don’t need a doctor’s referral but I’ve heard it can be helpful. Since your daughter’s treatment hasn’t been successful hopefully her doctors will offer their assistance for her referral to Mayo.
Click this link to get the process started: http://mayocl.in/1mtmR63

I hope you find some answers and a cure for your daughter! How old is she?

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@loribmt Thank you! Appreciate your insight and have shared this with my daughter.

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