Author Topic: Proton Treatment Journal  (Read 24438 times)

Freelander

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Re: Proton Treatment Journal
« Reply #45 on: December 08, 2018, 09:13:26 pm »
skipg...just read your posts, and curious how you are doing a few years post treatment.  Any issues/problems post treatment?  Any changes in symptoms, good, bad or otherwise? Any advice re: proton therapy, GK or CK?

Hope all is well.

skipg

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Re: Proton Treatment Journal
« Reply #46 on: March 30, 2024, 07:28:00 am »
Its hard to believe that 10 years have passed since I posted. I apologize to those I did not respond to after I left this site. I can tell you that my journey truly became the new normal. All my follow up visits were as expected. Slow dying of the tumor form the inside out. It appeared like a sponge on the MRI's showing holes and a shrinkage. The worst part of this journey is the tinnitus which I had before the treatments. It is definitely life changing. At first unable to get to sleep, tasks were hard to accomplish, and even reading books was difficult. The PCP I was seeing did some research and suggested I try an off label drug to calm my brain before going to sleep. It made all the difference in the world. I was hesitant to try it as I had read numerous concerns about taking Xanax, but it worked for me. I tried every therapy I could find for some relief but being SSD my options were limited. Balance is good until the lights turn off. As long as I have point of reference, as in the headlight of a motorcycle, I am good. Turn off that headlight on a dark country road and I am toast. Thank goodness modern motorcycles have the light on whenever the bike is running. If the head light burns out I still have the two running lights shining forward. All in all this has been a difficult journey but I am still on two feet and two wheels. God is good and He has guided my path. Probably the worst part of this is being SSD. Noisy rooms, restaurants, several people talking at once, etc all put my brain in a state of confusion. We have attended several weddings and I had to leave the reception due to the noise levels. Another one in April and I am going to enjoy the food then leave when the festivities get going. The most difficult part is realizing that you cannot let this little bugger define you. You do what is best for you and make your life not only bearable but enjoyable.
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12