Author Topic: Proton Treatment Journal  (Read 19330 times)

skipg

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Proton Treatment Journal
« on: September 17, 2012, 05:49:13 pm »
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   
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

skipg

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Re: Proton Treatment Journal
« Reply #1 on: September 18, 2012, 07:09:19 pm »
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
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

MDemisay

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Re: Proton Treatment Journal
« Reply #2 on: September 19, 2012, 02:42:27 pm »
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
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

lholl36233

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Re: Proton Treatment Journal
« Reply #3 on: September 19, 2012, 04:59:27 pm »
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
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

skipg

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Re: Proton Treatment Journal
« Reply #4 on: September 19, 2012, 05:08:49 pm »
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
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

skipg

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Re: Proton Treatment Journal
« Reply #5 on: September 29, 2012, 01:34:50 am »
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 
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Suu

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Re: Proton Treatment Journal
« Reply #6 on: September 29, 2012, 04:42:21 am »
Quote
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
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

skipg

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Re: Proton Treatment Journal
« Reply #7 on: October 07, 2012, 05:07:58 pm »
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
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

MDemisay

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Re: Proton Treatment Journal
« Reply #8 on: October 09, 2012, 11:18:29 am »
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
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

skipg

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Re: Proton Treatment Journal
« Reply #9 on: October 09, 2012, 01:51:07 pm »
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

Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

cindyjarrett

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Re: Proton Treatment Journal
« Reply #10 on: October 09, 2012, 07:35:22 pm »
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. 
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

skipg

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Re: Proton Treatment Journal
« Reply #11 on: October 10, 2012, 05:51:07 am »
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
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

skipg

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Re: Proton Treatment Journal
« Reply #12 on: October 13, 2012, 07:41:37 pm »
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
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Suu

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Re: Proton Treatment Journal
« Reply #13 on: October 14, 2012, 02:56:02 am »
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!
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

skipg

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Re: Proton Treatment Journal
« Reply #14 on: October 14, 2012, 04:18:26 am »
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
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12