Single-dose proton therapy?

[smorr23]

I'm wondering if anyone here has had single-dose proton therapy and could share their story.

I'm choosing a treatment for my AN and have been leaning toward proton therapy. I expected to hear that the proton therapy would be fractionated, but learned that because hearing preservation is not a concern for me (near-total hearing loss in the affected ear already), the doctors are recommending a single session instead of multiple sessions.

Has anyone had experience with this kind of treatment? If so, what was your impression of the single dose, and do you have any advice to share? I'd also love to hear from anyone who chose treatment at the proton therapy center at Mass General with Dr. Loeffler.

I'm new to the forums; hi, everyone, and thanks for your helpful comments!

[joyce04]

I just started reading about this. It looks very interesting. I am also a newbie here and am trying to read about different options.  I have meeting with several dr. coming up soon.
Tell me more about proton therapy and if you decided to pursue this!

Thanks

[KeepSmiling]

I am hoping you may have seen some of my posts (look under Keep Smiling) about Proton Therapy. My husband had fractionated Proton Therapy. (multiple PROTON radiation sessions) His outcome has been very good.

 Maybe give this a try. Do an advanced search and look for "Proton". See all the posts about the subject. Look far into the past. You will find that here are some people who also reported good outcomes. Recent proton patients seem to emerge with good outcomes.  Sadly I understand there are some people in this forum in the past who did have poor outcomes. My heart goes out to them.

 I did an Advanced Search at the Forum in 2013 for "Proton"  and/or "Proton Therapy" and I identified the names of ANA Forum Members who said they had Proton Therapy. Then I sent these members a message asking if I could arrange to speak with them. Example: I sent Ferguson75205 a message asking to speak with him. This was a nice guy and he spoke to us at length about his treatment at Loma Linda in California. I sent a message to SKPG and successfully arranged a time to speak. He got his treatment in Virginia. There also was a lengthy conversation with him… and so on.  I think that we spoke with TSL and TSL had a single dose of Proton Treatment and was doing fine as of late 2013. Please check for yourself. I think that inMaine72 also had a single dose.  I think it is likely that there are also other patients who have had success with Proton Treatment who are not on this list.  Anyway, here my  list, but  again, try this yourself. You may uncover much more details. Good luck!

1. Ferguson75205 ;Had Proton Treatment at Loma Linda in California (Good outcome)
2. Skpg; Had Proton Treatment at University of Hampton, Virginia. (Good outcome)
3. TSL; Had Proton Beam Treatment at Mass General Hospital, Mass. (Good Outcome)
4. inMaine724; PT at Mass Gen Hospital, Mass. (good outcome)
5. HJTRU; Unknown Proton Center
6. Ed; unknown center
7.KeepSmiling; Massachusetts General Hospital (This is us- no growth after one year, no side effects from Proton Therapy treatment  for about 1.5 years)
8. KeithMcGowan; Massachusetts General Hospital (good!)

Suggestion- try to arrange to speak with all AN patients who had Proton Therapy. Really search for answers. Ask your question about fractionated (multiple radiation sessions) versus a single proton session. Also ask: What was the Proton treatment radiation dosage? Compare it to the current radiation dosages offered.  Maybe there are differences? Ask lots of questions.   

Best to you!

[Ruthie Mac]

One of my first consultations after being diagnosed was with Dr. Loeffler at Mass General. Found him to be very charming but he sent me to a neurologist to make sure my balance symptoms were really caused by the AN (1.5 cm). The neurologist confirmed the symptoms were typical of an AN and ruled out anything worse? (I'm ok with being thorough), however Dr. Loeffler still advised Watch & Wait. I asked him (hypothetically) if I did choose proton radiation what he would suggest. He said if I still had hearing in the AN ear, he'd go with 30 sessions of proton; or without hearing- a single dose, similar to the concept of GK but with proton.
I was then introduced by a mutual friend (who is a doctor and happened to have an AN...same size, same age) to a radiologist at UMass Memorial who treated him (Dr. T.J. Fitzgerald) who was so knowledgeable about all the options and evolution of radiation and explained it all so well. He convinced me that I shouldn't wait too long to seek treatment. Because our mutual contact had such a good outcome with the radiation treatment planned by Dr. Fitzgerald, I decided to try the same procedure.
I highly recommend him as another resource for your research.
Ruthie

[grace]

Can you please tell me if the  proton treatment worked? Is it smaller? Side effects? Is there an long term studies on this? Sincerely appreciated, Grace

[PaulW]

Go to www.pubmed.com and search vestibular schwannoma proton therapy.
There are very few studies and the results to date have been poor when compared to GK or CK particularly around trigeminal and facial nerve preservation..
The problem with proton therapy is the accuracy which is typically +/- 3mm
Versus GK which is 0.5mm
Essentially they need to zap an extra 3mm just to make sure they got it all.