ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: gbly on September 17, 2020, 09:45:13 pm
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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.
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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.
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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.
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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.
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Thanks for keeping us in the loop. Good to know all went smoothly.
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Thank you notaclone13. Great team and I wanted to make sure everyone also knew about them as an option.
Good luck to all.
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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
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Thanks for sharing your journey, Proton is a relatively new approach to treat AN, your experience sounds very promising :)
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Thanks for sharing re: proton. Good continued luck !
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Thank you always appreciate everyone on this forum and looking out for each other.
GB
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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
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Thanks for sharing your experience! Is it a taping dose starting at 40 mg?
Catherine
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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
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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
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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
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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..
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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
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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
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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
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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
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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
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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
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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.
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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
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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!
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Doing my research now. Thank you for the recommendation.
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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.
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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.
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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.
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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.
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ColleenS,
Thank you and really glad to hear that I have hope on the long term. I have an appointment Jan with a facial specialist. I am going to ask about botox or acupuncture, so we will see what they recommend. Probably something I am not even thinking about. I will keep you posted.
This forum has been priceless for helping get to decisions, so want to keep paying forward.
Thank you all and have a great holiday.
v/r GB
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Good evening all, I wanted to pass along my latest update.
Seems I have synkinesis on my radiation side. Was able to get in with the doctors and they have recommended and administered botox to calm my face and get my eye to be more open. I am 2 days into the botox and I can already see and feel a difference, but max results seen 3 -4 days.
10 shots in neck to relax the banding - now smooth
1 shot into chin to relax the dimpling in chin, still slight dimpling, but better and still not to the 4 days.
1 shot in upper lid and 1 shot in lower lid to help keep the eye open. The volume was minimum to ensure no dry eye. But might happen, but have had dry eye for a good part of this, so ops normal.
1 shot in my check and still tight so might need to get a little more, but not going to worry about it until the next dose.
My biggest thing that I wanted addressed was the eye not staying open. I was very conscious of it and now much better.
I also start PT for my face in a few weeks and with the combo hoping to re-train my muscles. I also have one more treatment of botox in May so I will keep you all posted.
Good luck and great option if anyone is looking to even out their face.
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Thanks, gbly, for continuing to update your journey. That is really helpful for all of us in the ANA community.
I admire your courage for everything you have gone through. Let us know how it goes with your eye and face.
Best wishes for your treatments and therapy!
Don
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Thank you Don, but I would say we all are. Love this group and it has been very helpful for me. If it can help someone I am glad to share.
I just got botox and have the few days to let it settle in. It is funny, the smile is better, but the face frozen. hahahaha. the interesting piece is my AN side eye would not open all the way, post botox, wide open and does not blink with the non-affected side. But I like the results better than not having the botox. I start PT in a few weeks and I am hoping between the two I get some good balance. Doctor thinks this or maybe one more botox treatment will be all I need as the PT starts to work. Fingers crossed.
I am getting my 1.5 year MRI next Wednesday and will keep you all posted. the previous 6 month was very positive it was dying in the middle, I am hoping to report all dead now!
Good luck to all and have a good week.
GB
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Good evening everyone.
My apologies for not updating after my second MRI. I had great news and the tumor continues to die. I have one more MRI on the yearly basis, as long as everything continues to progress as it is. The hope is that 2023 will show all dead, and then the MRI's will shift to every 2 years.
Facial issues: I have had a second round of botox and the results have been very good. The only interesting pieces is that I definitely don't blink in unison. The AN side is kind of frozen but it is the resting face that I was going for. I have started to make it a game to see who I can freak out with the crazing blinking....hahahaha what else can you do? But to be serious not that bad, it is a lot in my head. The hubby says he doesn't even notice it...but he has to say that. ;)
My big challenge is I have moved and will be trying to coordinate all of the appointments with OHSU, now Dr. Murphy, she is wonderful too! But I am getting close to botox again, but I will see about maybe seeing about a different or reduced shots to see if I can work through some of the not being able to blink in unison. Will keep you all posted.
Again over all I will say the only thing I would have done different (if I knew then what I know now) would do the radiation sooner. I would have insisted on doing the radiation instead of WW, but normally they are not rapid growth. So really would have done nothing different, but it is fun to talk a good game.
I just hope this helps someone work through the decision process for themselves. Good luck to you all and keep us posted.
v/r GB
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Thanks for the great update, GB! I love hearing about the tumor dying. That encourages all of us!
And I love your sense of humor, especially making a game of freaking out other people with crazy blinking!
Be sure to let us know about your experience with the botox.
Thanks for sharing!
Don
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Good evening all,
I just wanted to post that I had my 3rd MRI (about 2.5 years sense radiation) at the end of January. All is going well and tumor is still on track to be dead. Dr. Blair Murphy said 97% dead and 94% that it will not come back.
I can't stop recommending OHSU to everyone. They have been wonderful. Dr. Jaboin was also at OHSU but has moved to Oklahoma, and he is amazing too.
Keep the faith and good luck to all.
v/r GB
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Wow! Thats incredible! So happy for you! Waiting for results on 4th MRI...