Proton Treatment Journal

[millie]

You are right Skip.  Praying for you during your treatments.  Millie

[skipg]

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

[skipg]

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

[skipg]

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

[skipg]

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

[Bobette]

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

[BeckyMax]

Skip, I love your scientific explanations, very cool!  I'm considering proton therapy as well, thank you for posting.

Becky

[skipg]

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
 

[cindyjarrett]

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

[skipg]

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

[BeckyMax]

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

[skipg]

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

[Jim Scott]

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 

[janetsue]

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!

[janetsue]

hi skip. how are you doing since your proton treatment? any symptoms or positive things to report?