Proton Therapy OHSU

[Matey]

Hi gbly! Me and you went in to around the same time to have the procedure! I am 2 months exactly today! I had a microdiscectomy on a herniated lumbar disk 21 days ago so I got my issues also..Sorry to hear that you had face issues. Hope after the DEX everything is going to be fine! Here in Bulgaria thay started me with the DEX right away after my treatment, I gues every country does it differently.I am having eye twitching also under the eye! I don’t care amymore! In Bulgaria we have a different culture than most countries! Here every night at dinner time we have drinks and I really enjoy it, because of the radiation they say don’t drink it’s going to help you through this process! I just don’t care anymore I am going to do the things I enjoy while i can I a 38 and have 3 kids to worry about! I am tired of thinking what is going to happen between the second third and 9 month! Going to do whatever I want whenever I can because I don’t know for how long I am going to be normal..It is really hard because 5 months ago I was 100 percent fit, strong and healthy and now everything is spinning and being focused sucks! That’s why I am trying to enjoy everything I can as the best I can..Everything else is BS...In our part of the world we love drinking, at least for a little while I forget about my worries..Sorry for me being hones but that’s how I feel about the hall situation..I hate this sickness and Hope everyone feels at least a little bit better..

[gbly]

Matey,
I am with you!  Thank you, and this whole thing has really made to take a look at life and grab each day by the tail and make the most of it.  I have been doing more things to get the experiences, and I do think some of this was from terrible (and worth it) eating of all the things that are bad for you.  It is okay, I am like you, I am going to embrace every day and if that is having a drink or ice cream etc, I am doing it.

I am coming up on 50 and had to remember this too shall pass.  The fact we have taken this head on (no pun intended) we have already started winning the game.  I am hoping the radiation is swelling the AN and this too will pass.
Good luck to us all in 2021 and we have great news in a few months.  Please keep me posted, as I will you all.
GB

[gbly]

Hello everyone,
I wanted to pass along that I had my 6 month post radiation MRI and great news, the tumor is responding to the radiation.  There is dying and couldn't be happier.

Good luck to us all.
GB

[judyette]

That is super good news!  Thanks for sharing your experiences.  I'm currently on wait and watch, but live close to OHSU and may be going there for treatment at some point (recently switched insurances).  Feedback from others who have been there is so helpful, really appreciated. 

I hope your facial and eye symptoms are improved now, and will go away entirely.

judyette

[gbly]

Judyette,
Thank you and the doctor did say the eye and face will come back, it is just one of the responses to the swelling.  I will say I don't like it, but at the same time it has started to come back.  But as I have calmed down about it, I will say I will take it over something worse, hahaha. 

Good luck with the insurance switch, that can always be a process.  OHSU two thumbs us and Dr. Jaboin and Dr. Gupta are fantastic, and you will love them.  Keep me posted and good luck with which choice you go with. 
Gretchen

[leek]

Wondering how you're doing now? I've just started researching my options here in the Boston area and am interested in proton therapy. My AN is 1.8cm, grew a lot last year so I need to figure things out soon. Having lots of balance issues and would like to fix this ASAP

[gbly]

leek,
Thank you for asking.  I am getting better slowly but sheerly.  I have found that my mouth is leveling out and my eye is a little slower to respond.  Strangely enough, I have been taking an aspirin twice a day and that seems to actually help a lot.  I know they had aspirin studies for shrinking the tumor, but thought what the heck give it a try.  I know some of the studies say the aspirin doesn't do anything, but I seem to have my face respond well, so I am happy with those results. 

I appreciate you reaching out, and you will do great with whatever you decide. I will say I am so happy with the proton and my symptoms are from the dang thing too close to my facial nerve.  But would do it again without hesitation.
Good luck and please keep us posted.
GB

[mwatto]

Hi GBLY do you take the aspirin with food and what dosage? Thinking I might try it...though maybe not with bromelain I take. I have been chatting to Prof Maruto and take the Bio 30 propolis every day - probably as he suggested for life. It def helps my nerve pain as does Vit D3 with K2 and melatonin at night. I think the bromelain has also helped. I also take PEA Palmitoylethanomide) for pain and this works on the endocannabinoid system.

[gbly]

mwatto,
I take 325mg per pill, one in the morning and one before bed.  The morning is without food, and evening is usually with food.  I will look into the bromelain, that will be interesting as well.    Always good to make sure the interactions of the different meds don't have bad reactions.  I will say that when I don't take the aspirin I do see the difference in my face and nerves.

Keep me posted and good luck.
GB

[mwatto]

Hi there will do! I think the bromelain does help, so does the Bio 30 and the melatonin. Basically any anti-inflammatory helps I reckon!

[gbly]

Doing my research now.  Thank you for the recommendation.

[mwatto]

You could email Prof Maruto...also I got the info re bromelain from Tumbleweeds posts - I also take Honopure based on Lisa M posts.
http://www.bio30.com/

https://www.researchgate.net/publication/23193630_CAPE_Caffeic_Acid_Phenethyl_Ester-based_Propolis_Extract_Bio_30_Suppresses_the_Growth_of_Human_Neurofibromatosis_NF_Tumor_Xenografts_in_Mice

The Bio 30 tastes vile I mix in with honey. I have to take 2 ml twice a day. You must not be allergic to bees.

[tam]

Hi gbly,
Wanted to see how your facial nerve/eye are responding as time moved on? Fractionated photon therapy is being suggested for my next treatment (1-year post-surgery and my tumor is growing again - couldn't be fully resected b/c it was on my facial nerve already). I'm fearful of photon damaging the healthy nerve/tissue, and thus, researching proton therapy. Wanted to see how you were doing after more time had elapsed after your proton therapy.

I hope all the swelling has settled down and everything is awesome. I'm just having a hard time deciding since it feels like every option can damage the nerve and leave me with facial paralysis, etc.

Thanks for sharing your story.

[gbly]

tam- sorry to hear that your AN is growing back. But you are on it and that is the important thing.

So I would say that my face is 75% back and still going in that direction.  I am now 9ish months, but none of these goes quick as I have read.  I have read up to a year for getting everything back.  I have been doing facial exercises to make sure it does continue in the right direction.

So I did the research and the advantage of the Proton is that the surrounding tissues etc are not as impacted by the radiation over the previous generation of radiation. 
Cancer.gov
https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation
John Hopkins
https://www.hopkinsmedicine.org/news/articles/photons-and-protons

You Tube video - I watched this one many times
https://www.youtube.com/watch?v=G8m7RSVuye8

From all of them, the main take away is that the proton ray is more precise and stops at the point of impact (tumor).  It doesn't go through the tumor and damage other tissues around.  Dr. Jaboin stated that Proton therapy is 96% successful, I love those odds!

Now I will say you are like me and that the facial nerve is all up in there....but I will say as I have wondered through this journey, I have come to accept the left side of my face.  It was challenging at first, but as it has gotten better I have also stopped to realize how lucky I am with it dying.  Then the fun side of me likes to say, if I want Botox it will be half the cost....only one side of the face needs it!  HA!!!

These AN's test us for sure, and it is a battle when you don't see the old you in the mirror in the beginning, but I will say that it will get better if you go with Proton.  You will probably have a few rounds of steroids and that is okay too.  I found I did 3, wondering sometimes if I should try one more but think it is my nerve getting back to life.

Not sure if I said it above, but when the tumor swelled as it was dying, it stretched my facial nerve.  Just like all nerve damage, it just takes time to come back.  It will and has most of the way.  It did make me look weird in that my eye lid on the AN side would not close but that was cause I didn't have the nerve to counter.  It is coming back and no matter what you do, facial exercises I swear by them.

Proton has my vote, and I no regrets on my part.

Please keep us posted and good luck with your decision. 

[ColleenS]

Hey there! I also had delayed facial trauma/weakness. I am over three years out and the nerves are still improving/healing. Hang in there! I did/do some basic facial stretching and massaging. Time is the best healer.