Side effects after proton beam radiotherapy

[kantera]

Hi. Just completing proton beam RT at Mass Gen for a growing 1.8 cm AN. Have significant vertigo but no hearing loss. I️ have now developed facial nerve issues and trigeminal neuralgia. My vertigo had been improving but is worse again since RT. The dr says the facial nerve stuff will improve and if the trigeminal nerve issues worsen I️ can start tegretol which I️ really don’t want to do. Does anyone have experiences with how long they had nerve issues after completing proton beam RT?

[KeepSmiling]

I am sorry to see you have had nerve issues. My husband had a somewhat smaller AN and he had none. I hope you feel better soon.

[notaclone13]

Hi Kantera,
So sorry to hear you are having some problems after proton therapy. Vertigo is definitely upsetting. I have had some very bad episodes in the past due to a problem unrelated to AN. I have found a low dose of clonazepam (brand name Klonopin) to be helpful as it is a vestibular suppressant. It has a longer half life than Valium so it doesn’t wear off quickly. Another forum member with vertigo has found  Orphenadrine to be very helpful. That comes in an extended release form that does not make him sleepy. Has your doctor given you anything to help with that issue? I have heard that the facial nerve is relatively resilient and will recover with time. Many on the forum have had transient issues with the facial nerve after radiation and have experienced improvement with tegretol. All forms of RT,  whether delivered by CyberKnife, GammaKnife or proton beam are complex medical procedures. The healthy tissue will need time to recover.  Please continue to post as you recover to let us know how you are doing.

[JLR]

Hello I had Trigeminal Neurslgia 5 years after Cyberknife. The Tegetol worked great for a few months. But the tumor was still growing and leaning on the nerve root causing the pain.  Had surgery 2016. I now have facial issues.  And now this is odd... I always had a slight wave with my hair but it overnight recently became curly. I mean tight curls. Anyone have same problem.

[Freelander]

Thank you for posting this, as there are few messages relative to the experiences of people who have had proton therapy for their AN.  I  recently met with a doctor at MGH who stated that proton therapy is supposed to reduce impacts to the facial nerve, compared to photon radiation due to the low daily dose of 1.8 gray.    Did your doctor say whether your facial symptoms are common or unusual so soon after treatment?   And what did s/he say about the worsening vertigo?  Knowing that your hearing was unaffected has to be reassuring.

I hope these symptoms quickly disappear and you start feeling better soon.

[PaulW]

Please be aware that if you receive radiotherapy you will receive 1.8Gy for around 25 days
This is 48Gy in total.
There is currently no evidence that fractionation has any advantage over single dose when treating acoustic neuromas. If you received radiation in a single dose you would get 12-13Gy and it is possible to receive a second treatment in most cases, without exceeding your lifetime limit of radiation to your head. There is however disadvantages to fractionation due to a slightly higher risk of cancer, potentially triggered by the additional radiation received.

[Freelander]

Having spent a little time reading up on the medical physics for radiation and AN, I can unequivocally state that I am no expert on range uncertainty or how best to control it.   That said, the notion behind many smaller doses (e.g. @1.8g with proton treatment) with a long duration between each dose (24 hours) is to minimize impacts to the critical organs at risk.  The key appears to be allowing enough time for any intentionally or unintentionally radiated healthy tissue to recover somewhat before the next treatment.  Proportioning the time between doses with the dose strength, results in an effective, safe treatment even when the cumulative dose may be 54 Gy.   Again, it is neither done all at once nor in five days, yet more like over 5-6 weeks, at least for fractionated SRT using protons.  As far as evidence in support of multiple sessions, there are many papers that indicate fractionation is a viable treatment option, especially for larger AN:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4247447/ to show but one.  Some of the references go back over 20 years ago.

In addition, in a presentation to the Boston AN Support Group in 2017, titled, The Evolution of the Management of Acoustic Neuromas (available on the ANA online video library), Dr. McKenna of MEEI emphasized how a fractionated protocol delivers less toxicity to the cranial nerves, though, to PaulW's point, he also noted that there is no demonstrated difference between SRS and fractionated SRT in the tumor control rate; however, it is noteworthy that the implication is that less damage to nearby organs at risk is more likely with a fractionated approach.   In the presentation, a study at MGH showed that when SRS with a dose of 12 Gy was compared with fractionated proton SRT at a daily dose of 1.8 gy for 30 days, 16% of people had trigeminal nerve complications with SRS, while only 4% showed such complications with the fractionated approach.   Tissues seem to tolerate well spaced smaller doses better than a single large one, even when the cumulative dose can be much higher.  Every radiation approach has risks, and as is often stated, we need to do our homework then decide, at least we can all agree on that.
Hope for the best of outcomes, whatever choice is made.

[kantera]

I️ am now 3 weeks post fractionated RT and the vertigo seems to have stabilized. I­t­ comes and goes but is to,enable but now I️ have tinnitus on the tumor side which I️ did not have before. I­t­ is quite aggravating and unrelenting. I️ still have my hearing on the tumor side.  Does anyone have experience with post RT tinnitus? Will it subside as the swelling decreases? Is I­t­ more likely that I️ will  lose my hearing because I️ have the tinnitus now?

[KeepSmiling]

We continue to hope you are feeling better.

You asked about symptoms after Proton Therapy and in the past I did reply and say that my husband did not have any. Nothing has changed about my husband's lack of symptoms, since 2013. His last MRI in Feb 2018 revealed slightly smaller tumor size and he is not scheduled to get another one for 5 more years. You can see the shrinkage that occurred in his ANA Discussion Forum “Profile”. previously had a 1.5 cm lesion and now it is .5 x .8 x .8 cm. Here is his ANA Discussion Forum “Profile”: 12/O6/2O12: 1.5 cm lesion. Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.He goes to the gym and does an intense indoor cycling spin class most days, enjoys snorkeling , kayaking, swimming and other activities. He still has occasional tinnitus and the hearing in his good ear continues to be a bit overly sensitive. He wears a special hearing aid in that good ear. He has no issues with balance. He has no loss of facial muscles. He has no cognitive issues whatsoever and he is busy at his  job.

We are not trying to be boastful when this outcome is described. We are trying to provide hope. We sincerely continue to hope that your situation is improved. You have been in our thoughts. Please update us about how you are doing now.

[coinman]

  I had 26 fractional treatments of radiation (Thomas Jefferson Philadelphia ) ending 12/05/13, for a 2.1 cm tumor.
 I continued to work during my treatments. My hearing loss and tinnitus before the treatment remained but I had very few side effects, just some nausea. I think the fractional treatments are less harsh on the body.     

[notaclone13]

Coinman, do you know how many Gys of radiation you received?  Did you retain any hearing in your AN ear?  It does seem like you had minimal side effects after the radiation. Did you have any balance or dizziness issues before and/or after the radiation?