Final Update on Treatment at UF Health Proton Therapy Institute

All treatments were at the University of Florida Health Proton Therapy Institute  (UFHPTI Facility).

There are 3 Gantry's (also called Proton Rooms).  3 techs are in each treatment room - 18 techs in all.
9 in each shift (7-3) (3-11).   This is quite an operation - 100 plus patients treated daily.
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Every patient receives a lanyard with your name and a scan bar.   When you come into the facility, you scan in, drink 24 oz. water 30 - 45 minutes before your appointment, then they come out and escort you to the Gantry's for your treatment.
 
Each treatment lasts about 20 minutes with set up and a one minute Proton treatment.

The UFHPTI website updates every 5 minutes all day on the status of all 3 gantry's - any delays or if they are ahead of times, is updated on the website all day.

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Week 1
(August 21 - 25)
1st Day of Treatment (NOT a great start)
Treatment time is set for 7:30 PM
After we arrive at the facility we discover all 3 gantry's are down and they are now 3 hours behind.
Techs advised us to go home and my first treatment is now tomorrow 8/22 at 10PM.
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Although we are NOT happy campers, the positive attitudes of all UF Staff, Techs and Doctors helped immensely.   We are now educated and will check treatment schedule updates daily before we come in.   Newbies, as I am, get the latest times starting out, since they treat patients from 7AM - 11PM Monday thru Friday - For my first week I get 5 days at anywhere from 8PM - 11PM.  Makes for a very long day.  Friday, I was lucky the techs called me for a 1PM treatment as they had an opening.   That was nice.     If they have an opening, the techs can call you in early, if you request it ahead of time.  I had requested a 1PM - 3PM treatment window when possible.

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Week 2
(Aug 28 - Sept 1)
4 treatments completed thru last week and 25 to go
My mind set is good.   Still have late night time’s average this week @ 9:30 PM - 11 PM
Crazy as it seems, it’s actually okay.   The second shift techs are more laid back and we get all day beach time to keep relaxed, plus they play great music during treatment.   Thursday pushed our limits though, as we walked out of the facility at 11:45PM.  This was my first full Five day treatment week. 
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We had many questions at our weekly Wednesday appt. with my Dr. and his assistant.   All were answered and a total review of all aspects of my Proton Therapy was discussed with us at this meeting.  Once again, the positive attitudes of all UFHPTI staff this week was incredible.
​Side Effects:   No side effects at all this week.

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Week 3
(Sept 5 - Sept 8) 
9 treatments completed thru last week - 20 to go
Drove home for Labor Day Weekend.  Back to St Augustine late Monday.  My last treatment time of 11:15 awaiting me on Tuesday evening.  Starting soon we will be on times of 1PM - 3PM time slot FINALLY.   What a beautiful thing.   This will be a 4 treatment week which is great with me. 
Side Effects:  No side effects at all this week.
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Week 4
(Sept 11 - Sept 15) 
13 treatments completed thru last week - 16 to go
Hurricane Irma Week - Brutal week for both Deb and I.
Facility closed Monday and Tuesday - will get treated (Wed - Sat) this week as the facility will open up on Saturday to catch up.
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This was a tough week as we had to evacuate our condo on Vilano Beach.  The only bridge off the Island closed Sunday thru Tuesday.   Not knowing if it was going to hit hard we had no choice but to evacuate the island, in case we had treatment in Jacksonville.    We moved into a Hotel in Downtown St Augustine for 4 days - hotel lost power almost 2 days.   Irma was also hitting our home in Sarasota and our families were there in the storm's path.  I almost packed it in this week but Deb kept me focused on our mission of Kicking Cancers Butt by completing Proton Therapy as the goal.
Side Effects:  slight burning in urinary tract, slight energy loss

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Week 5
(Sept 18 - Sept 22) 
17 treatments completed thru last week - 12 to go
Good week - I will have 22 treatments in by Friday.  Attitude is good/health good/side effects minimal - fatigue mainly and a slight burning in urinary tract.

Dr. appt. this week went really well.   They have narrowed the proton beams down to zero in on the specific area of the prostate that is cancerous. This also helps protect the healthy tissue and organs around the prostate.  Once again 1) low entrance dosage 2) hard dosage at cancerous site 3) zero exit dosage.  Amazing!!
Side Effects:  slight burning in urinary tract, slight energy loss

We love our time on Vilano Beach.   It is a surreal experience to live on the Atlantic Ocean for 6 weeks.   The 2 main concerns we have each day
1) Beach and walk times on the beach
2) Proton time - not necessarily in that order.
Most patients were surprised and envious of our decision to stay on the beach 45 minutes away!!
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Week 6
(Sept 25 - Sept 29 - 27)
22 treatments completed thru last week - 7 to go
Had final Dr. visit on Friday after treatment 27.  Two more treatments to go next week to complete my time here at UFHPTI.   Time to go home.
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The positives of the week were the techs, my treatment times and the Doctors final appointment.  Deb, as always on this trip, was right there with me all the way thru.   Although our stay on Vilano Beach was great, it's time for this journey to end.   One last storm crushing the beach convinced us it was time to go.  Perfect timing for the Perfect storm!!
Side Effects:  slight burning in urinary tract, slight energy loss

Oct 1 - Our wedding anniversary - tried to celebrate by going out but winds were so high and flooding in the streets, we spent it at the condo celebrating.

Week 7 
(Oct 2 and 3rd) 
27 treatments done thru last week - 2 to go
Side Effects:  slight burning in urinary tract, slight energy loss

Treatment 29 now in the books....the last one finally....What a day it was Tuesday - packing up and leaving our condo, knocking out the final treatment, graduating with the Final Bell Ringing Graduation Ceremony, saying goodbye to Drs, Nurses, and Techs then heading home @ 3PM Oct 3, 2017.   Arrived home in Sarasota at 9PM - Journey Over - Mission completed.

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SIDE EFFECTS
​QUALITY OF LIFE
There were NO side effects Weeks 1-3
Weeks 4 - 6  minor side effects only including
1) slight burning in urinary tract and
2) Slight energy loss.
No rectal or impotence side effects at all during treatment and thru today.

Physical activities have not been affected at all.  Golf, softball and weight training, etc-  all Good. 

My quality of Life has not been impacted by this treatment which is a Great Thing for both myself and Debbie, as this was our main goal in addition to getting rid of cancer.   We accomplished both.​​

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WRAP UP AND FINAL THOUGHTS
All in all this was quite an experience.   UFHPTI is an awesome facility with so much to offer including  (You can check out the information on them by clicking here or their site by clicking here )

1) Cutting edge technology

2) Young energized doctors and techs

3) Highly organized and structured plans and execution, as I was involved with no less than 12 nurses, assistants, techs and staff that assisted me every step of the way.

4) Positive attitudes and atmosphere is apparent at all times by Doctors and staff.

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​5) UFHPTI is an alternative therapy option that I found in an internet search for "QOL" (Quality of Life) after treatment.

After researching their treatments and comparing them to the others, we made our decision and are happy we did.

​PLEASE, if diagnosed with possible prostate cancer...PAUSE, BREATHE, RESEARCH, REACH OUT, SLOW DOWN THE PROCESS, and if possible don't make a decision right away.  It could make a big difference in your Quality of Life. 

Get information from multiple sources before you decide to do  "Active Surveillance" or any other treatments. 

We have added some other info titled “Lessons Learned” and "Timeline Leading Up to Our Decision  before we made our decision.

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If you choose Proton Therapy, the place you choose to stay while you are there is very important to your attitude and atmosphere - To stay at the condo on the beach, even though we had to drive 45 minutes each way, was a very important thing for both Deb and I.   We could take walks on the beach right outside our door for miles, collect our thoughts, collect shells, see the sunrise every morning, and relax on the beach which always seemed to give us peace and so much more, before or after going in for treatment each day.   ​

​This ends my Journey to a cure that started in November 2016.    My final treatment was October 3, 2017 (11 months later) I am good to go.
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I had to have a PSA Test the day after treatment ended - it was completed Oct 4, 2017.   We are very excited to share they were better than we expected.   PSA Test Results  Post Click here

We will keep you posted on all future PSA Tests, but they will just keep going down - that I feel sure of.   Click here

Reach out anytime if you need to email: [email protected]    I will be glad to talk with you.

Treatment & Graduation Pictures  Click Here and Click here

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