ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: skipg on September 17, 2012, 05:49:13 pm
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Having explored all the available options I had decided on Proton Therapy for my course of treatment. My An doubled in size from 7mm to 14mm (from Jun 2011-Jul 2012) and the Dr who was monitoring me said it was time to take action. It was interesting to me that him being a surgeon, he was more than willing to discuss the radiation treatments over surgery. He had no experience with protons and his suggestion was Gamma Knife 1st even though he worked with a Cyber Knife doctor who trained at Stanford. I had done extensive research and was going to go with Cyber Knife, if and when I needed to seek treatment, but that all changed with the construction of the Hampton University Proton Center. My wife and I had a 3 hour consult with Dr Allen Thorton at HUPC. I was hesitant going to a newly opened center until I found that the team at Hampton originally was at the Harvard Proton Center and from there went to Indiana University Proton Center, formerly the Midwest Indiana Proton Center. Together his team of experts have treated hundreds of AN's. The draw back to Proton Therapy is the cost and the fact there is a total of 30 treatments. I am fortunate to live across the river from Hampton, about 30 mis each way.
Insurance turned us down twice for these treatments but at the level 3 appeal they overturned the denials and approved the proton treatments.
The 1st step was to have impressions of my teeth made as they construct an appliance that fits into your bite and your head rests against this via your upper teeth.
Step 2 was to have a surgeon implant 4 small, 4mm stainless steel screws at locations around your skull as reference points for the proton nozzle to align itself each time. This was outpatient and was more of an inconvenience as I was going on a motorcycle ride the next morning. The spots were tender but not overly painful. I did take some great pain meds that afternoon and night. The day after I was good to go as long as I did not cinch the helmet down tight.
Step 3 was today. I went to the proton center to be fitted with the bite appliance and had a mold made of my shoulders and head. The mold is a 2 part foam inside a plastic form. When they lay you into the exact place you will be it swells up and creates a mold you lie in each time the treatment is done. They also did a CT scan that tells the techs the thickness and the bone density that the beam passes through to reach the targeted tumor. They will spend the next 2 weeks writing the program that tells the proton machine exactly where the tumor is, its size, and depth.
The treatments are scheduled for Oct 8th. I will do regular updates and try not to bore you. I hope this information will help others in making an informed decision if this is the route they choose to go.
One final note. My wife and I did not take this decision lightly. We put everything in Gods hand for His guidance and direction. Doors that were closed to us opened up and we walked through. We thank God for His peace throughout this entire decision making process and guiding our steps along this path.
More to come.....
Skip
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Today was a final MRI before treatment begins. The last MRI was July 12 of this year and it could have grown as mine doubled in size (7mm - 14mm) from the previous June. Good to have exact measurements but I am getting really tired of that machine. It took an extra long time as the tech operating the machine was consulting with the docs to make sure they had everything they needed. It is amazing how everything comes together. They do the scan, the computer assembles the pictures, and the doctors, via the internet, can view everything before you even come out of the tube. Of course I was stuck in there twice as long this time.
Skip
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Dear Skip,
I am personally glad that you have decided to document your approach to this, go for it! Now that you have, you are providing choice to those newbies who have not yet decided which treatment choice to go with, good for you.
Though, I do not know if you have begun yet? I want to time my prayers for you.
Mike
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Skip, I had proton radiation at MGH in Boston in dec 2009. The experience was just like you described. I have no regret. It turned out great. Keep us posted.
Laura
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Laura, Thanks for the encouragement. Dr Thorton was at MGH until he went to Indiana in 1992. He and his team came to Hampton in 2010. He was directly responsible for having Hampton University selected as the site for the proton facility.
Mike, I am tentatively scheduled for the week of Oct 8th. Thanks for the prayers, this means a lot.
Skip
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Nothing new here just waiting for the week of Oct 8th when treatments should start. Tinnitus is raging strong for some unknown reason. The last MRI before treatment begins was comical. The proton center received the insurance approval and scheduled the MRI. The MRI center called me to verify the time and date and advised me that they had the authorization. MRI completed and I go home. I receive an excited call (later in the week) from the insurance company asking why I went to the wrong MRI center. I explained that I went where I was told to go and that everything was supposedly in order. "But you were supposed to go to UVA", she tells me. When I explain to her that UVA is in Charlottesville, about 3 1/2 hrs away, there is silence. They are investigating to find out who entered the wrong facility. But...I was told that ultimately it is the patients responsibility to make sure everything is in order. Whats a person to do but laugh at the system and move on.
Skip
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The treatments are scheduled for Oct 8th. I will do regular updates and try not to bore you.
One week and 2 days to go and I'll be waiting to read your update again.
You have a great attitude to people who pass the blame onto the person being treated. They are the ones with the certificates and not us. I hope your ride through this next stage is easy and problem-free.
Cheers,
Suu
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It is Sunday evening and I go to the Hampton University Proton Center tomorrow for the simulation. They will do everything exactly as it will happen during the next 30 days except no protons will be fired into the tumor. Glad to get this started and looking forward to the next 30 days of treatments. The worst part of this will be the drive over. The cities of Norfolk, Va Beach, and Chesapeake (The South Side) are separated from the Hampton area by the James River and connected by 2 tunnels and 1 bridge. The James River Bridge is further to the north and out of the way to use. The Hampton Roads Bridge Tunnel is easiest but very susceptible to backups. 3 to 5 miles is not unusual and if an accident occurs then everyone is late to their appts. The Monitor Merrimac Tunnel is usually the best choice, although it is a little further distance wise. My appts will be at 1:30 each day which should be a good time to go over. 30 mis and about 40 min each way. Maybe I can claim a tax deduction for travel to medical appointments?? Got to look that up.
Skip
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Skip,
May your journey be a painless one as you go for treatment. You have a lot of people praying for you and pulling for you! Go with God, you have researched your options well, and HE is pleased. It is up to you to relax now and keep us updated as your treatment allows!
Mike
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Yesterday the simulation went as planned. I am amazed at everything that goes into getting ready for these treatments. The Doctors monitor and approve everything before protons are released. The simulation took about 40 mins, that due to checking and double checking by the doctors who are monitoring the location and placement of the where the beam will go. A final consult with the Doc before the actual treatment begins, viewing the actual beam placement on the xrays they took, and the signing of consent form and I am ready.
Today was the 1st of 30 treatments. Total of about 20mins with 4 min of actual proton treatment. (2 min ea at 2 different angles). Setup takes much longer than the actual treatment. The most uncomfortable part of this is the bite appliance you rest your teeth into. It is very difficult to swallow when this is in place and your head is held stationary. There is time between actual shots when you are able to swallow and make small movements with your arms and body. The actual proton beam going into your skull is a nonevent. The sound is like an xray machine taking a picture but it lasts for 2 minutes. The therapists told me the only affects they have witnessed or been told about by patients is sunburn like spots where the beam goes in and loss of hair in the same area, but this grows back, and fatigue, which increases as the treatments progress.
More to come after the first week.
Skip
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Am keeping you in my thoughts and prayers. I go to UVA on Thursday and will be having gammaknife on Friday. I am getting a little nervous but have turned it over to God. Feel like everything will go fine. Just wish it was over, and I was headed home.
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Thanks Cindy, you have my prayers tomorrow. Two friends have had GK, one at UVA and the other one at Riverside in Newport News. Neither was an AN patient but they both had skull based tumors. Both did fine with the treatment. The only comment they had was of tenderness where they fixed the head piece to the skull. You have made a good choice as the neurotologist I was seeing recommended GK as first choice for radiation.
Skip
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The first week of Proton Therapy is over. Mon was the simulation and Tues to Fri were the actual treatments. Uneventful except for the nauseau I thought I was having on Thurs. I realized that it was not the treatments but my diet. I made 2 loaves of bread on Thurs and when I took them out of the oven that smell drove me to overindulge. Well after 4 slices of hot fresh bead with butter (which I never consume) I started to feel a little queasy. Two Tums and about 2 hours later I was back to normal.
No extra fatigue or increased tinnitus to report. The main problem is the tunnel I have to go through. Just as I got about 1 mis from the entrance they closed the tunnel. I gave myself an extra 40 mins for road congestion. After sitting for about 15 min and not moving I rode the bike down the side of the highway to the inspection station and was told that a box truck was stuck in the tunnel and they were sending wreckers in from the other end to extricate it. Decision time. I called the Proton Center and told them I would be late for my appt. I the exited the west bound side of I-64 and headed in the other direction (East) to get to Hampton. A complete circle in the opposite direction of about 45 mis. When I arrived at the Proton Center I was 30 min late but the tunnel was still blocked. When I was heading home from Hampton, the interstate I was on still had a line of traffic 6mis long slowly going through the tunnel. This is life in Hampton Roads. Thank goodness it was not the tourist season..
I will update again next week. I am looking forward to another uneventful week.(except for the traffic)
Skip
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Skip - you write as if you're really really reeeeeeeeeeally cool about everything and that's what's gonna get you through the next 3 weeks.
Oh and us too :P
Good luck!
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SUU,
Thanks for the encouragement. This AN becomes a piece of cake when you meet others going through so many difficult conditions.
A motorcyclist, now in a wheelchair, being treated for a spinal tumor. He is looking to buy a
smaller bike and ride again.
A recently retired fellow with bladder cancer. When his treatments are completed he is selling
his motorhome and buying a condo in Florida.
Many others with prostate cancer.
I am fortunate to meet them and keep them in my prayers. My AN becomes nothing compared to what others are going through.
Skip
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You are right Skip. Praying for you during your treatments. Millie
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Week #2 is done - Again, nothing new except this tunnel traffic that is always unpredictable. If traffic is as bad as this gets then these treatments will be a piece of cake.
The weekly checkup with Dr Thorton was also encouraging. Seems like most of the 12 cranial nerves are unaffected. I say most as the 8th (vestibular) is already impacted with hearing loss and slight imbalance. He advised me that it is possible for the 5th (Trigeminal) and 7th (facial) to be impacted temporarily. I would notice a slight loss of feeling in the forehead and cheek and even a type of sore throat that would be behind the nasal area. He laughingly told me I was the 1st patient he ever treated for a brain tumor that rode their motorcycle to the treatments. Love to set new standards.
No increase in the tinnitus or extra loss of balance. Thank you Lord for continued success with these treatments.
Skip
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I want to make a correction to a previous post.
There are a total of 30 treatments. 5 days a week then weekends off. The proton beam is focused from three different angles. Day 1 is from two different angles and day 2 is the 3rd angle and this rotation continues. Each beam is 2min in duration and each day is a total of 1.8 grays. The margin of error (which I watched on simulation) is .02mm. The readouts on the x,y,z,axis is 00.00 degrees with the computer filling in the numbers depending on the angle being shot. If there is any variance from the tolerance then the computer will not allow the treatment to begin. Each angle has its own aperture placed on the proton nozzle. This aperture is a large diameter piece of bronze with its center cut out into the exact shape of the tumor from each of the different angles. Three angles and three different bronze apertures. Each aperture is bar coded and the computer then knows which aperture is correct for each angle. On the front of the aperture is a wax compensator that mimics the thickness of the skull and bony structure the beam passes through. This sets the penetration depth of the beam.
Sorry if this boring but it is fascinating to me. I am hoping to speak with the physicist and go through the actual process of separating out the protons and making the beam. I think I missed my calling.
Skip
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Week #3 completed. Nothing new happening. Tinnitus is as bad as ever, do not notice any increase. It may be my imagination or a compensation of some type occurring but balance issues seem better than before. Nighttime walking is easier and going up stadium steps is less difficult. Hope this is real and not my mind playing tricks. Halfway there.
Skip
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Extra day off from treatment. Thank you Sandy, the entire area is shutdown. Back to normal tomorrow, I hope. And I thought we had made it through the hurricane season without so much as a strong wind.
Skip
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Skip,
Thank you for posting your treatment journal. I am sorry I missed it earlier in the month. I had never heard of proton treatment and am very interested to find out more, although I am now post-CyberKnife.
We are all praying for those affected by Sandy. May the Lord continue to bless you.
Bobette
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Skip, I love your scientific explanations, very cool! I'm considering proton therapy as well, thank you for posting.
Becky
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Week 4 was over and I forgot to post anything, just nothing significant happening. I did tell the Doc that I seem to have an ever so slight increase in hearing in my right ear. How do I know? Here is an easy test to use at home. Take your old fashioned landline that has a constant dial tone and move it slowly closer to your ear. When you hear the tone stop and take a measurement from your ear. Use this point of reference when you check week after week. Not very scientific or medical, but it will give you an idea if there is improvement. Of course this does not count for word recognition.
The "in the dark" unsteadiness is mostly gone and haven't had any wonky head feeling. At the end of the 4th week I did feel like I had 10 cups of coffee in a row and my brain was in overdrive. This subsided over the weekend. Concentration levels are certainly not what they used to be.
All in all I feel very good, a little more fatigued in the evening but am doing well.
Skip
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Skip,
I had been wondering how you were doing. Sounds like it is going great. I also have that feeling of overdrive in the brain. I had it really bad while they were doing the gamma knife, which could have been nerves, and I have had it a couple of times since then.
Keep us posted.
Cindy
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Finished the last of the 30 treatments last Tuesday the 20th. Still mostly a nonevent. I rode my Harley every day except the 3 times it rained and 2 times I thought it was going to be too cold for my wife to enjoy the ride. She came with me as her work allowed.
The negative..I do have issues with fatigue, which I expected. Too stubborn to take a nap when I should...I also have a feeling that my thought process is going 100 mph. Like I am working on ten different projects at the same time and not being able to focus on one. Probably a concentration issue. I finally got my red spot. The last day of treatment developed a small circular sunburn high on my rt cheek where one of the beam angles went in. They tell me most people develop these along with hair loss at the entry point early in their treatment. Tough skin I guess.
Another checkup in 30 days and then schedule the followup MRI.
This has been a piece of cake and enjoyed almost 1500 mis of bike riding. Would I do this again? As of right now.....yes, without hesitation.
Skip
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Skip, thanks for sharing your updates. I presume the red spot will heal? I'm curious if this subjects you to an increased risk of skin cancer? Maybe a dumb question.
I look forward to "hearing" how your checkup goes and, of course, how tour hearing, cognition and facial nerve fare in the coming months.
Becky
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Hi Becky,
I have been told that most people that receive radiation over a period of time lose hair at the spot of entry and develop a type of sunburn. Mine has already cleared up about a week and a half after it appeared. I have not heard anything about skin cancer developing and I had asked the doctors. This treatment has been done for decades and I have yet to find an incidence of skin cancer, not to say a report is not out there. The "sunburn" appears on all patients at the point of entry. Prostate, brain, kidney, breast and other points included. In my case it was very minor. Some people with more sensitive skin can develop a rash and dry flaky skin.
Skip
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For what it's worth: In 2006 I underwent 26 FSR sessions on a debulked AN. My radiation oncologist told me that he programed the amount of radiation high enough to destroy the remaining AN cells but low enough to preclude loss of hair or skin irritation. Consequently, I did not experience any skin irritation or hair loss. The radiation sessions were uneventful but very successful (the tumor 'died').
Jim
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hello. thank you for replying to my question. your journal has been helpful. :) i have 2 more questions if you don't mind.
1) What size can the tumor get before proton treatment isn't a treatment option?
2) While you have been getting your treatment, have you spoken to other AN patients that have had a good outcome using proton therapy?
thanks so much! :)
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hi skip. how are you doing since your proton treatment? any symptoms or positive things to report? :)
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My 1 month follow up is Dec 21st. The only thing I have noticed is fatigue. I started to force myself to take a nap in the afternoon and that seems to help. My tinnitus is the worst part of this AN. I had it bad before treatments and it is still almost unbearable. Keeps me up at night and disrupts my normal activities. I am hoping that when the tumor starts to shrink it will lessen the pressure on the nerve and hopefully the screaming will decrease. My night time stability has improved greatly. I left this am in the dark on the Harlley, not remembering that I had curtailed riding in the dark. I had not wanted to take a chance riding at night with one part of my balance system being compromised by the AN. As it was everything was almost back to normal since the treatments were completed. I also noticed I have been experiencing a very slight improvement in hearing. Very minimal but hopefully the start of better hearing.
Skip
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thank you for the update. please keep us informed how you're doing. :)
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Here it is Jan 23rd and I realized that I forgot to post after my Dec 21st follow up appointment. The appt was one month after the final proton treatment. There was nothing new to report and the Dr said he was not expecting any negative developments. No improvement in hearing and no "fullness in the head" feeling. The tinnitus is as bad as ever. I was hoping that when the tumor realized it was dying, it would give up and reduce the pressure on the nerve and maybe lessen the screaming in my head. Starting to get very cold for riding so that type of therapy is diminishing. I was able to go for a New Years Day ride and rides on Jan 2nd, 3rd, and 4th. These always seem to help. Noisy echo y places still bother me due to the SSD. Next appt is for the end of March, after I have my 4 mos post treatment MRI. Overall I am better now that I was back in July when the symptoms became much worse. Wonky and full head, unsteady, nighttime stumbles, and overall goofy feeling, all of which are gone. Better days are still ahead!
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It's great to read your symptoms are lessened. Hope you continue to recover strongly.
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skipg,
Glad that you seem to be doing well. I was recently diagnosed an am exploring all options. My AN is bigger than yours was (2.4 x 3.4cm) I have an appt set up on Monday with Jefferson in PA to discuss FSR. I also have sent my MRI to Penn Medical to see if Proton would work for me. Were you able to find out any followup statistics as far as recurrence? How about facial nerve function and hearing? Thank you very much for sharing your information.
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Just got back from 4 mos post proton checkup which was 1 week after the scheduled MRI. Tumor showed no growth and initial indications are of necrosis in the center and starting to show water like composition, whatever that means. But regardless, this is good news and what they were expecting. Hearing still gone in AN ear, same as it was before proton treatment. Now onto Cross hearing aids.
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Dear skipg,
Great news! You sound happy? Cross hearing aids? Are they new?
Mike
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Just got he Cross last week and boy are they hi-tech. Over my head to try to understand how they work in the auto mode, and yes they work great.
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Hi Skip! wondering how you are doing. Our ANs are very similar, just got my latest MRI and after the intial 6 months without growth I've had a spurt from 5x7 mm to 8x11 mm. Resuming my research on Proton Beam Therapy. Can you give me an update?
Becky
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Hi Becky, sorry to hear about your growth. Well I am now 10 mos post proton and have another MRI scheduled for Sept. My June checkup was uneventful (no MRI) just a Dr Appt for any physical signs. Nothing new. I still have hearing loss in AN ear along with the tinnitus. The tinnitus is better than it was at its worst but still annoying. Balance is he same as it was. Only time I notice difficulty is when I walk slowly or come to a stop on the bike. No falling, just a feeling that I know I am not at 100%. Put about 5000 mis on the bike this summer with no problems. Both 1 and 2up. I never had any other nerves affected. Are you still a candidate for GK. If you read some of my other posts you would have seen my regret on not having GK as soon as the AN was found. The studies came out after mine had doubled in size and I started Proton treatments. Keep the faith and let this encounter build you up.
Skip
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Thanks Skip. I do recall reading of your regret for not doing GK immediately, but can't remember the reason, I'm gonna review your prior posts.
I talked to my doc yesterday, he still thinks I should wait, but I'm having doubts about waiting too long. We spoke on the phone very briefly and I wasn't going to get into all my questions on the phone. i have an appointment to see him on 9/18. My husband sees him as well for hearing loss related to a car accident, so we scheduled both of us at the same time, hence the reason I have to wait so long. I'm okay with waiting another 3 weeks to talk to him, but unsure if I'm okay waiting another year for my next MRI. My biggest concern right now is that my tinnutus is getting worse, also I've been experiencing some pain in my cheek - not so much pain as pressure. This could also be explained by a blow to the face when I walked into the awning on our camper about the same time the pain started, but it's still something to consider. Of course, hearing had diminished greatly in the last year. We will talk hearing aids at this appointment as well.
Thanks for the update!
Becky
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After the tumor doubled in size the tinnitus kept increasing until it became almost unbearable. It was to the point where it was literally disabling. I had difficulty sleeping and was walking the halls at night, unable to concentrate during the day, and overall feeling of constant mental misery. My caution to anyone is not to wait too long if growth is detected. But then again it seems that these an's affect everyone differently. My hearing kept diminishing to the point where I now have a Cross hearing aid due to ssd. If you get a hearing aid now and your hearing keeps diminishing (which we all hope it will not) insurance may not cover e new hearing aid. I was shocked that our ins. co. paid for the Cross with only a $40 co-pay. I am good for 3 years before I qualify for another aid.
Skip
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Thank you for sharing your experience. We really appreciated it.
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Just had my 2nd post proton treatment MRI. Getting used to these as I kept falling asleep. Nothing like a good Harley dream to keep you dozing. Anyway go for Dr appt next Wed. The last MRI in Feb showed the middle of the tumor starting to change. Hopefully more change for the good. Hearing is still gone but the Cross helps. The tinnitus is bad and sometimes makes me feel like I am losing my mind. Hopefully this too shall pass. Balance is mostly good. Over 10,000 mis on the bike in the last year and nary a spill or close call. Looking forward to a good report.
Skip
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Thanks for talking to us about this. Our experience with Proton Therapy has been very good, so far. It has been 7 months since the last day of treatment for my husband and he is doing very well. We are very glad we took this path. He has had no side effects. We believe and hope that his first MRI will demonstrate good findings. Thanks again.
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skipg...just read your posts, and curious how you are doing a few years post treatment. Any issues/problems post treatment? Any changes in symptoms, good, bad or otherwise? Any advice re: proton therapy, GK or CK?
Hope all is well.
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Its hard to believe that 10 years have passed since I posted. I apologize to those I did not respond to after I left this site. I can tell you that my journey truly became the new normal. All my follow up visits were as expected. Slow dying of the tumor form the inside out. It appeared like a sponge on the MRI's showing holes and a shrinkage. The worst part of this journey is the tinnitus which I had before the treatments. It is definitely life changing. At first unable to get to sleep, tasks were hard to accomplish, and even reading books was difficult. The PCP I was seeing did some research and suggested I try an off label drug to calm my brain before going to sleep. It made all the difference in the world. I was hesitant to try it as I had read numerous concerns about taking Xanax, but it worked for me. I tried every therapy I could find for some relief but being SSD my options were limited. Balance is good until the lights turn off. As long as I have point of reference, as in the headlight of a motorcycle, I am good. Turn off that headlight on a dark country road and I am toast. Thank goodness modern motorcycles have the light on whenever the bike is running. If the head light burns out I still have the two running lights shining forward. All in all this has been a difficult journey but I am still on two feet and two wheels. God is good and He has guided my path. Probably the worst part of this is being SSD. Noisy rooms, restaurants, several people talking at once, etc all put my brain in a state of confusion. We have attended several weddings and I had to leave the reception due to the noise levels. Another one in April and I am going to enjoy the food then leave when the festivities get going. The most difficult part is realizing that you cannot let this little bugger define you. You do what is best for you and make your life not only bearable but enjoyable.