ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: KeepSmiling on March 01, 2018, 10:21:23 am
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Great news! My 60 year old husband had a conversation with the nurse and confirmed that the most recent MRI (taken Feb 23, 2018 for his five year anniversary of the Proton radiation treatment), actually showed shrinkage of the 1.5 cm tumor in the range of 1/3 to 1/2. In July- Aug of 2013 he had Proton Beam Treatment which, for him , involved 28 treatments in somewhat uncomfortable customized devices that kept him immobile. He had no pain before the proton therapy , during , or afterward. He continued to work each day (full time), using a virtual office we created at the library for cancer patients and even participated in teleconferences with hundreds of colleagues. Treatments each day took an hour and a half- most of which was preparation. He had no balance issues. He had no numbness or paralysis. We did incur expenses- the expense of relocating to that area for 6 weeks. If anyone needs any info we have many detailed notes. Specifics: Deaf in one ear. Wears a special hearing aid. Gets occasional tinnitus. Is sensitive to loud noises with other ear and wears earplugs in loud environments. Previous 1.5 cm tumor is now .5cm (AP) x .8 cm (TV) x .8 cm (CC). Dr. Loeffler Massachusetts General Hospital (The MGH Francis H. Burr Proton Therapy Center uses proton beam therapy to irradiate cancer and benign tumors. Proton beam therapy can be precisely aimed at a tumor with minimal dose to the surrounding healthy tissues.) Good luck to all of you!
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Would love to get an update on this Proton beam therapy outcome. Any problems with facial paralysis?
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I just wanted to let you know that sometimes, after a while (it's been three years since this post) people might not log on to the forum...do not despair!
You can do a search in the forum archives for other folks who posted about proton therapy.
Wishing you the best!
Marla B.
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Leek,
I had proton therapy in Sept. 2020 and just got my 6 month MRI. I had great results for the tumor, but my face on the AN side has lost a lot of muscle paralysis. Doctor said that I responded well from the proton and because of the swelling the nerve is pinched. However, he did give good odds that I will have the swelling go down and that most of my facial expressions will come back. I do a lot of facial exercises everyday to make sure to keep everything moving.
Did you have a similar issue?
GB
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I am diagnosed with AN few days ago and I am on wait and watch treatment now. Could you please give more detail about proton therapy? Is your facial expression came back? Thanks.
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Sjoshi,
I am so sorry for the delay in getting back with you. I started a post within the radiation on the Proton therapy.
https://www.anausa.org/smf/index.php?topic=24846.msg979781293#msg979781293
I started in the WW too, but mine decided to grow fast. I was mentally not prepared for surgery and focused on radiation. I was lucky in that OHSU had proton.
I am 9 months and my face is slowly recovering. I still need to take steroids every once in a while. but I would not change a thing, I know that the tumor was on the facial nerve with my reaction and I don't want to think about what the nerve would have done with surgery.
The only thing I would have changed...done it sooner when the tumor was smaller. But in the beginning I didn't have the proton option, but would have done the proton at least 6-9 months earlier. That is the one change. My Dr. said proton is 96% success rate, and I love those odds.
Keep me posted and good luck. Ask away and I will try and answer.
GB