Proton Therapy OHSU

[gbly]

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
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.

[gbly]

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.

[gbly]

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]

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]

Thanks for keeping us in the loop. Good to know all went smoothly.

[gbly]

Thank you notaclone13.  Great team and I wanted to make sure everyone also knew about them as an option.
Good luck to all.

[gbly]

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]

Thanks for sharing your journey, Proton is a relatively new approach to treat AN, your experience sounds very promising 

[bigjack711]

Thanks for sharing re: proton.  Good continued luck !

[gbly]

Thank you always appreciate everyone on this forum and looking out for each other.
GB

[gbly]

Good evening all,
Just wanted to send you all an update.  I have been having some interesting symptoms and wanted to share so others might have input or know for themselves.

I have been having what feels like TMJ or constant pushing on the pressure point behind the jaw/ear area.  Been growing more intense over the last few weeks, ibuprofen had been helping.
Also noticed about the same time that I was feeling the nerves across my face do a slight twitching.  Slight double vision in my left eye in the morning.
All of these combined I called the doctor to make sure it was not something more serious or swelling. 

Dr. Jaboin's team called me back and put me on Dexamethasone - 5 days twice a day.  I am on day two.  The swelling of my lymph node by the jaw has already gone down and the TMJ feeling has gone away.  Slight sore from the long term wait on my part.  But way better.
I did have a slight twitch under my eye, but only for a second or two and no pain.  Less tonight then yesterday.

Keep you all posted, but feeling really good right now.

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
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.
Dexamethasone - 5 days twice a day - Dec 2020

[ccwu]

Thanks for sharing your experience!  Is it a taping dose starting at 40 mg?

Catherine

[gbly]

Catherine,
No it is 2mg no tapering.  Great question and will update that for others.
It has done its job fast and fell so much better in my jaw area.

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
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.
Dexamethasone - 2mg - 5 days twice a day (no tapering) - Dec 2020

[ccwu]

Hi, Gbly,

Just saw your response.    It's great it's working for you.  Thanks for sharing this detailed info.

Have a happy holiday season!
Catherine

[gbly]

To keep everyone up to date:
On my second round of steroids, for the left side of my face going flat.  Sunday I noticed that I could not close my left eye with out my right following.  I realized that my left side was not responding to any facial request.

I will say that I am truly hoping it is the swelling and not continued rapid growth. Dr.'s nurse did mention that the 3 - 6 month is right where I am at, so this is not un-normal.  She said to reach out on Monday to see when the Dr. wants the next MRI.  We are in the window and see what we have going on.  Will keep you all posted, but for those of you that have had facial paralysis:
1) how long did it last?
2) what did you do for it?
3) did you do any facial exercises?
etc

Thank you
GB