Author Topic: Proton Therapy OHSU  (Read 316 times)

gbly

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Proton Therapy OHSU
« on: September 17, 2020, 09:45:13 pm »
Howdy everyone.

As I move through this journey of AN, I wanted to do the same as all that have gone before and document my journey so that it might someday help future AN's peeps.

In April 2019 I woke one morning and was not able to hear about of my left ear.  Of course I went to the doctor and they said probably too many years in an engine room (loud noises) and this was going to be the new normal for my ear. However, the doctor said just to cover all bases, he would order an MRI to check just in the off chance it was a AN.  The chances of that were small so he didn't think it would be a AN.

Well, as it turned out, I had a small AN in my left ear - .4 cm. Recommended I do a WW, and do a MRI at the 6 month mark.

August of 2019 I did a follow on MRI at OHSU with Dr. Gupta and the measurement came back at .7 cm.  I attributed the measurement difference to a different machine and the correct doctor, measured it differently....

 Dr. Gupta said lets continue to WW and come back a year later for another MRI.  So August 2020 I went back to OHSU for my MRI.  I got the call a few days later and knew it was going to be an interesting conversation when his first words were "how you feeling?"

Fine why???? 

Dr. Gupta:  Well you have one of the most impressive fast growing AN's I have seen in a long time. You basically doubled in a year, it now measures 1.7 cm.

Made the appointment to go in and discuss the options. He did pass that he was interested in the Translab for me, and before our appt that would give me time to research the procedure.  I also asked about radiation and he said yes it is small enough, after our appt. I can refer you if you would like.

After the appointment still went for the appointment with Dr. Jaboin for radiation consult.  Make a long story longer,  I am moving forward with radiation. Dr. Jaboin passed that due to the location of the AN and on my brain stem, he wanted to break up the treatment 3 - 5 small doses.  I was thinking CK, but at my simulation appt and another MRI later, he said the radiation was going to be Proton. 

Dr. Jaboin would like to do 3 treatments, starting Tuesday, Thursday and Friday.  Once I start I will continue to add to the post so that the info is out there.

Hope this helps.
gbly

Left ear AN
.4 cm - April 2019
.7 cm - Aug 2019
1.7 cm AN - Aug 2020
Sept 2020 start 3 rounds of Proton Therapy


gbly

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Re: Proton Therapy OHSU
« Reply #1 on: September 22, 2020, 08:53:20 pm »
Day 1 is done.

Amazing team and was in and out in less than 40 minutes.  The team at OHSU was amazing and so professional. 

After treatment I did have a slight headache and took two ibuprofen, and cleared up in less than 30 minutes.  I will say my hearing in my left ear is quite muffled, but I am assuming that is from the treatment.  I do know that they were expecting me to loss what is left of my hearing, but I expected it to be a little while, not right away.

We will see if it clears up.

I will keep you all posted.
« Last Edit: September 23, 2020, 07:18:02 pm by gbly »

gbly

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Re: Proton Therapy OHSU
« Reply #2 on: September 24, 2020, 08:26:38 pm »
Treatment number 2

Very quick and zero issues with the treatment, and last one tomorrow.  Had a slight dizziness for about 30 seconds after and then all clear.  Tired after and did take a nap.

The interesting thing was an office call with the doctor just to do a double check. The interesting discussion was my two doctors were talking again and Dr. Gupta really wanted to remove, looks like it has left an indent in the brain stem. Said the new MRI really made the AN look bigger, but Dr. Jaboin said no stable and same size.  Gonna keep the fingers crossed that after tomorrow the AN will die no issues and no surgery like I was trying to avoid.

Keep you all posted on tomorrow.

gbly

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Re: Proton Therapy OHSU
« Reply #3 on: September 25, 2020, 05:00:31 pm »
Treatment 3 and final.

All well nothing to report, feeling great.  They did pass I might be slightly tired over the weekend.

Back for MRI in 3 months to see what is going on.

Keep you posted.

notaclone13

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Re: Proton Therapy OHSU
« Reply #4 on: September 25, 2020, 05:02:46 pm »
Thanks for keeping us in the loop. Good to know all went smoothly.

gbly

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Re: Proton Therapy OHSU
« Reply #5 on: September 26, 2020, 07:48:29 pm »
Thank you notaclone13.  Great team and I wanted to make sure everyone also knew about them as an option.
Good luck to all.

gbly

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Re: Proton Therapy OHSU
« Reply #6 on: October 10, 2020, 09:14:55 am »
Hello everyone.
It has been two weeks post radiation and feeling great.  I had a very slight headache the first few days but nothing excedrin or Advil didn't cure. Hearing was a little more muffled over the first week, but think it is back to what it was before the radiation, never going to be what it was before AN.
Overall, week 2 has been great zero issues.
Good luck to all and keep you posted as things progress.
GB

sg_way

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Re: Proton Therapy OHSU
« Reply #7 on: October 11, 2020, 09:25:46 am »
Thanks for sharing your journey, Proton is a relatively new approach to treat AN, your experience sounds very promising  :)

bigjack711

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Re: Proton Therapy OHSU
« Reply #8 on: October 20, 2020, 10:31:50 pm »
Thanks for sharing re: proton.  Good continued luck !
Dx March 2016: VS left side, 1.2 cm x 0.9 cm x 1.1 cm, W&W
June 2018:  1.9 cm x 1.4 cm x 1.3 cm, now what?More W&W
Jan 2019:  1.8 cm x 1.5 cm x 1.6 cm, ready for gamma but chickened out.

gbly

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Re: Proton Therapy OHSU
« Reply #9 on: October 21, 2020, 09:59:20 pm »
Thank you always appreciate everyone on this forum and looking out for each other.
GB

 


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