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GOING FOR PROTON

Feb2010
Posts: 51
Joined: Mar 2010

Since getting the Dx from my physician, it has been a roller coaster of emotions; worries, grief, and relief, all bundled up together on a seemingly endless free ride.

I could wait and don’t have to do anything at this stage, but my own unique situation forces me to make a decision and be clear of PC now. I am hopeful that Proton Treatment will do exactly that.

I have to stop worrying about all the uncertainties. If PC rears its ugly head again in the future, I will deal with it in the future.

Right now I have to move on. Right now, I have to take care of it with the least amount of stress on me and my family. I believe Proton Therapy combines an efficacy factor comparable with the other options and the aforementioned objective in mind.

I will be posting each step I take along the way, during the course of my treatment, and the results. I know you will be there, supporting me through it all.

To all of you, brothers-strangers, bonded together by an unfortunate event…from the bottom of my heart, I thank you so very much.

I’ll “see” you around.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Which Proton center will you be going to?

Larry

Feb2010
Posts: 51
Joined: Mar 2010

I have called Loma Linda, they have a two-month waiting period for consultation and another month for treatment. University of Florida doesn't have a waiting period. I have not decided yet. Loma Linda is the pioneer in this field, although UF has been around for four years now, and they have a nice record as well. The waiting period seems to be the "deal-breaker".

Trew
Posts: 891
Joined: Jan 2010

It is amazing how easy it is to get into Loma Linda between Thanksgiving and Christmas- many men do not want to start a 8-9 week program that goes through Christmas. So for a brief time each year there is almost no waiting to get into LLU.

At LLU I was seen by Dr. Rossi- he is very good at nuclear oncology. But consider- LLU is now the oldest proton center in the US. Newer proton machines may have fewer down times than the ones at LLU, but the attending staff at LLU will make you feel very comfortable about treatment. If you need a place at LLU to stay I would recommend the place I stayed at-a little less expensive than most and very comfortable. If you look at the list of housing LLU provides my wife and I stayed at Creekside Apartments. We stayed in the Sunflower room and it was about a 10- 12 minute walk from the treatment center.

Feb2010
Posts: 51
Joined: Mar 2010

Thanks Trew. Loma Linda would be really great, the timing, my job relocation, etc., plays a big part. I do have time to wait but I think I could have the same results at UF.

Trew
Posts: 891
Joined: Jan 2010

whiled at LLU I met patients coming in through southern CA traffice up to 2 hrs one way for treatment, then drive home for work in the afternoon.

If you could find use a proton center close to home that would be an option.

Others hve done it.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

My dad was treated at Loma Linda and doing great. Check on the cost though between the two.
When I did my research last summer the cost at Florida was considerably higher then at Loma Linda but then I found out insurance would not pay for either so went with Davinci.

Larry

Feb2010
Posts: 51
Joined: Mar 2010

Thanks Larry.
I checked with TRICARE, and fortunately enough, they do cover the cost of Proton Therapy.

Trew
Posts: 891
Joined: Jan 2010

So where are you going for proton treatment? I think this is a good choice myself. There are a lot of happy "graduates" from proton treatment and the numbers are growning every year.

Trew
Posts: 891
Joined: Jan 2010

Hey Feb, just wondering if you have decided on just where you are going to get that proton therapy? You are not forgotten.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Hi Feb, I just wanted to wish you well and please post on your experience, it is so helpful to read about others' courses of treatment.

Feb2010
Posts: 51
Joined: Mar 2010

It has been about a week since I visited this site last. I have been really busy.
Thanks for all the kind words.
I have chosen Loma Linda,primarily based on their pioneering experience.
I was told my consult won't be until June and start treatment a month later.
I spoke with my primary physician at Portsmouth Naval Medical and confirmed that with my stage I should be fine considering the time delay in treatment.
I have faxed all my doctor's notes and pathology reports and am waiting for LL to call back.
Mrs, I will post updates regarding my experience. I will share everything that I could. Thanks again.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I have a consult with Loma Linda in a few weeks. If I decide to go forward with proton, I'll look forward to playing some golf with you during the treatment. From you reference to Portsmouth Naval Hospital, I'm guessing you're retired Navy. Me too. We can swap some sea stories and other lies about how good we were back in the "real" Navy.

Swingshiftworker
Posts: 616
Joined: Mar 2010

I just heard from Loma Linda a couple of days ago and I've been "cleared" for a cash (out of pocket) consultation. The consult hasn't been scheduled yet, but will probably be in the 2nd week of June.

Haven't decided on whether to go w/Proton Beam Therapy yet or not, but I'm now in the system and am good to go as a cash patient if Blue Shield (which I am switching to from Kaiser) will pay for it. Not certain whether Blue Shield will pay for Proton Beam Thearpy or not, but there is NO question that Kaiser will NOT pay for it.

I'm still also considering CyberKnife treatment at UCSF and have a cash consultation pending there on April 20th. After that, I'm going on vacation and will be doing some off-roading in the mountains and deserts of UT, CO and AZ.

Life is too short not to enjoy it. :)

Trew
Posts: 891
Joined: Jan 2010

SSW, I have a Blue Cross PPO policy and I was covered. I wish you the best. I met a couple of vets getting treatment at LLU. There is a good VA hospital not far from LLU- only a mile or so away.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

In addition to Cyberknife, which I am also doing a consult with, you might want to check out Novalis Tx as a treatment option. They market themselves as the next generation Cyberknife and the inventor of Cyberknife recently left the Cyberknife comany and joined the Novalis company. While similar in many ways I believe the biggest differences are more accuracy in shapng the X-ray beam, doing the procedure without using the fudicial implants necessary for Cyberknife, and takes less time. Novalis is at UCLA Medical Center, Harvard, and several other prestigious medical hospitals. I have a consult with them too and there is a clinical study going on with Novalis that should you qualify, might provide closer monitoring of your condition. Plenty of websites describe the procedure in detail.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

Are you going to UCLA for a consult about Novalis......Is it for a study?....... If so what is the criteria......Can you direct me to any medical literature..................to me the Novalis sounds good, but I have a concern of it being very new, and not tested.

Ira

PS. Were you able to go to Alvarado Hospital for a support group with Dr. Barken.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ira, I was unable to make it over to Alvarado yesterday as we had some family in town. The Novalis clinical trial is sponsored by San Diego Radiosurgery at Palomar Hospital in Encinitas. The Website is http://www.clinicaltrial.gov/ct2/show/NCT00969202?term=novalis&rank=1. I spoke with Laura Bauchert and told me that I was a candidate for this trial and we have a consult scheduled later this month. I thought I'd read that UCLA was also part of the trial but couldn't find that web reference.

I share your concerns about its newness but Stanford, UCLA, Harvard, Duke and other medical centers seem to be embracing it full force. Interstingly the inventor and founder of the Cyberknife procedure announced last month that he was leaving the company and going to the company that builds Novalis.

The eligibility requirements are:

Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Male
Accepts Healthy Volunteers: No

Criteria

Inclusion Criteria:
Histologically confirmed adenocarcinoma of the prostate
Gleason score ≤ 6 and low volume Gleason 7 (3+4)
PSA < 10
Clinical Stage of T2a or less
Ability to understand and the willingness to sign a written informed consent document

Exclusion Criteria:
Prior radiation treatment for prostate cancer
Gleason score > 7
PSA > 10
Clinical Stage of T2b or greater

Other websites I found useful:

http://www.novalistxradiosurgery.com/
http://www.irsa.org/Novalis.html
http://www.medicalnewstoday.com/articles/122391.php
http://radonc.ucla.edu/body.cfm?id=76

Trew
Posts: 891
Joined: Jan 2010

Too late for me on all points. Important thing is to act while those lab numbers are still relatively low. I am sorry every day my PSA was not being checked by my family doc. Oh well, so it goes sometimes.

Good info, though.

Swingshiftworker
Posts: 616
Joined: Mar 2010

Thanks for the tip, Kongo.

The only clinical trial of Novalis that I found on ClinicalTrials.gov is a 2 yr study ending in August 2011 being conducted by San Diego Radiosurgery at the Palomar Medical Center. Contact: Laura M. Bauchert. Phone: 760-739-3835.

I found info about the use of Novalis at UCLA on it's Radiation Oncology site but no mention of a clinical trial w/Novalis there. The only current clinical trial listed on UCLA's site is one to measure the amount of natural repair of DNA following radiation treatment. See: http://radonc.ucla.edu/body.cfm?id=63&oTopID=62.

However, I also found 2 long-term (7 year) clinical trials of CyberKnife. One using a uniform dose distribution and another using a simulated brachytherapy dose distribution. Both are sponsored by Accuray (the mfg of CyberKnife) and are being held at sites all across the country.

Since one of the problems of brachytherapy is the limitations of seeding in reaching all areas of the prostate, the idea of the simulated brachytherapy doesn't appeal to me. IMHO, the better study with less restrictive criteria is the uniform dose distribution trial. There's only one trial site in CA at the Scripps Cancer Center in La Jolla (which I believe is a 1st rate medical institution). Contact: Debbie Deseno, RN. Phone: 858-652-5465.

I'm going to contact all of these organizations to see what's going on.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Check this website re the clinical trial. Still ongoing. http://www.clinicaltrial.gov/ct2/show/NCT00969202

If you do a google search on "Novalis Tx" you will get a bunch of hits about the system, its manufacturer, and where it is and where it is planned.

Although I have not yet been to the consults with either Cyberknife or Novalis, my reading leads me to believe that Novalis takes advantage of more sophisticated organ tracking and beam forming technology and does not require the fudicial implants associated with Cyberknife. I meet with them the last week of April and will let you know what I find out.

Cyberknife has a good patient discussion board moderated by doctors who use the system. I found lots of good information there and the doctors were quick and responsive in answering queries.

http://cyberknife.com/Forum.aspx?g=topics&f=2586

Swingshiftworker
Posts: 616
Joined: Mar 2010

The link you cite is for the San Diego Radiosurgery Novalis Trial at the Palomar Medical Center that I mentioned above.

Thanks for the CyberKnife forum link! I saw it the last time I visited Accuray's site, but forgot about it.

Feb2010
Posts: 51
Joined: Mar 2010

Have fun Swingshift!!!

Feb2010
Posts: 51
Joined: Mar 2010

Who knows, I might see you there. Good luck brother.

Feb2010
Posts: 51
Joined: Mar 2010

After all the consultation and pod fitting, I'm going to start my proton radiation treatment on June 14 at Loma Linda UMC. Wish me luck y'all.

142
Posts: 169
Joined: Dec 2009

Feb,
A decision well-considered deserves our support and best wishes. Report back, please.

(I was too far "down the road" for proton as a primary treatment, but seriously considered it).

Trew
Posts: 891
Joined: Jan 2010

I wish with all my might my PC was caught soon enough and I could have avoided surgery and gone with the proton. I enjoyed LLU- thought the staff was great. I wish you luck. You will soon be a part of the BoB.

Feb2010
Posts: 51
Joined: Mar 2010

When did you start your treatment?
How is it progressing?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Feb, I elected to get treatment using Cyberknife instead of protons at Loma Linda. I felt the Loma Linda group was extremely professional, highly knowledgable, and generally outstanding. I just felt that I could get where I needed to be better with Cyberknife and am in the prepartory stages for that treatment now. Loma Linda became my backup plan.

Best of luck with your stay at Loma Linda. I'm sure you will have a great experience.

drbrr
Posts: 3
Joined: Jun 2010

I did my proton therapy in the summer of '08 at UF Jacksonville. The wait at LL was far too long, and frankly I wanted the newer equipment. Most all the places are equally good. My experience at JAX was extremely positive. We loved Jacksonville, and the center was one of the most positive places I've ever been in.

Feb2010
Posts: 51
Joined: Mar 2010

How did it go? You're almost in your one year anniversary.

Feb2010
Posts: 51
Joined: Mar 2010

Any complications? I just finished mine at LLUMC last month.

Trew
Posts: 891
Joined: Jan 2010

Feb, how is it going? I'm looking forward to an update on your treatment.

Feb2010
Posts: 51
Joined: Mar 2010

I apologize for not posting much sooner. My treatment ended last August 25 and I am now back at work. I will post more updates about the procedure and my experience at Loma Linda after work. But, real quick, it was a very positive experience. I know it's not for everyone but, it is something that is truly worth checking into. More later...

Trew
Posts: 891
Joined: Jan 2010

I have been wondering how treatment went with you. Please, share the details, what gantry where you in, and how did you like the balloon? LOL! I can share that with you.

I can't wait to hear your LLU story.

Feb2010
Posts: 51
Joined: Mar 2010

I had my initial consult with LL in May. Based on my Gleason scores and medical history I was told I could actually start treatment as soon as possible. As some of you may already know, a customized pod is made for proton a patient, that’s where we lay down, as still as possible while the technicians are calibrating and "aiming" the proton aperture. I was given a start date of June 2 but I had to decline because of logistics as well as work related reasons. June 14 was then set for me. My wife and I flew in to San Diego on June 12, visited friends and relatives. We arrive in LL Sunday afternoon to a very nice one bedroom apartment/duplex owned by Jimmy Martinez; I sent a deposit and committed with Jimmy over for the lease, and I wasn't disappointed with the setup. Back in May we made a deposit at Centrepoint Apts, but later changed our mind when we found Jimmy’s apts online.

Week 1: Insurance Problem

Prior to flying in, I have been in contact with TRICARE about covering the treatment. I was told that I wouldn't be covered if I go to LL, that I should go proton center in Indiana, I didn't want to go to Indiana. We still flew to Ca, and we were convinced that the matter will be resolved. It wasn't. I was finally told what I needed to do. I was under TRICARE North Region, the reason I wouldn't be covered was LL was under TRICARE WEST. All I have to do is enroll under TRIWEST, get a referral from a primary doctor and wait. Well, I had to do this rather quickly. We drove back to San Diego, went to Balboa Hospital, enrolled in TRIWEST, chose a primary physician, thank God LL was on the list, made an appointment, and, catch my breath, had a referral made and waited, and waited. LL didn't get the authorization from TRIWEST until late that week. New start date, June 25.

It doesn't hurt at all when put in the balloon using a pediatric probe, but to me, that's the part I hate the most. I actually dread it, but, oh well. Positioning and aiming took most of the time I was in the Gantry. Gantry 2's crew was awesome, Tim, Shawn, Joe, Becky, and Luis.
I can't ask for any more professionalism from this crew.

I started getting bouts of fatigue and sleepiness almost at the very start. Proton like photon radiation affects different people differently. By the second week, I had to really watch what I eat. Green and fibrous veggies were out, that was easy. More protein, I was ok with dairy. Diarrhea, bloating, gas are the negative effects when I wasn't careful.

They started me with night treatments, but I requested early mornings, which they were able to accommodate. My daily schedule was wake up at 545, drink at least 18 oz of water; I eat a little piece of bread and drink almost 30 oz of water to fill up the bladder, 30 mins before treatment. My appointments were at 0630, the longest time I had to wait was maybe 30 mins from my appointment time. I really had to pee right after each treatment.

Go in the changing room, take of pants/underwear, put on the stylish hospital gown and chat with the other patients while you wait to be called in. Different people, different ages, sharing a common bond, PC, and we became friends.

45 times. 45 balloons.

By the third week, I started developing radiation burns on both sides of my hips where the proton beam was being aimed; they really turned bright red by the last week of the treatment. They didn't hurt but they look weird.

After treatments, my wife and usually go to the Drayson Center, a fitness facility where I was able to re-acquaint myself in working out. I actually, by choice, stopped working out after I retired from the military. I guess I just got tired of it after 23 years of doing it.
But, I was glad I did it. It was hard trying to get back; the weights were a lot heavier, and the running a lot more laborious. By the second week, it was getting easier, and more fun.

My bouts with fatigue will come out of nowhere, I will be sitting down, all of sudden, I would just feel so worn down, during those times, all I wanted to do was lay down.

Urgency to urinate started on the second week of treatment. Frequency was not a problem, but when I have to urge to pee, I really had to go. The feeling is like you've been holding it for a while and when you have a chance to pee, it kind of hurt before it starts flowing, but then the flow is weak.

Sexual activity was normal throughout the treatment. No restrictions on daily activities except when I'm really feeling tired.

Stress from being in a new place, uncertainties, finances, work, a lot things were playing in my mind during the first two weeks, but they gradually went away. Prayers do work, and God really listens. He was there with us the whole time we were there. He has always been.

The whole experience was one of the best in my life. My family and I made it into our "long overdue" vacation. I was able to re-connect with my old friends, even attended my 30th high school reunion; and made new friends along the way.

The symptoms started going away, the urgency, fatigue, sleepiness; the "burns" started fading.
It has been two weeks from last treatment. My first lab work to check my PSA will be in four months.

This has been a long post. I should have been posting while I was there.
If anyone has any questions, please send them my way.

Like Trew is saying, Proton is not for everyone. It was for me.

Trew
Posts: 891
Joined: Jan 2010

See my next post- this was an opps!

Trew
Posts: 891
Joined: Jan 2010

good report. the gantry crews are all great. nancy, in Gantry 3 started my 15th and last treatment before I went over to "the dark side" as they referred to external radiation with this comment as she prepared to put the balloon in: "This is my last chance to have my way with you!" It was funny, I laughed the balloon was inserted and in a few minutes I was done with my last treatment. The next 25 treatments were the tuff ones for me.

And holding that water was tuff for me, too. since surgery I only had a limited holding capacity and when that limit was reached, I would have to go NOW and the whole department really worked well with me.

So who was your attending LLU doctor? I had Dr. Rossi.

georgeireton
Posts: 1
Joined: Sep 2010

I am coming to LLUMC from Northern Calif on Monday. This will be my annual inspection. I did 20 trips to the gantry last August. PSA started at 6.8, now 1.4! No side effects. No problems. Take it easy Trew. You are not there by accident. God has a hand in this! I am now involved in the Cancer Relay For Life in my town. I am the online chair. Our team theme is MASH! See: http://main.acsevents.org/goto/mash We will raise $4077 this year. Get it? MASH 4077? Heh.

Feb2010
Posts: 51
Joined: Mar 2010

Take care and keep in touch.

Swingshiftworker
Posts: 616
Joined: Mar 2010

The 45 day and 45 balloons was one of the reasons I chose CyberKnife over Proton Beam Therapy -- not the only reason, but one of a critical few.

That said, it was my 2nd choice and heard generally good things about it. Hope it all works out for you in the end.

Good luck!

Trew
Posts: 891
Joined: Jan 2010

SSW, One gets use to the balloon pretty quickly and it is actually a bonding experience among patients. You can imagine the comments, perhaps, that such an experience generates, and it is a good diversion from all the cancer stuff around you.

I"m sorry you missed it. LOL

Swingshiftworker
Posts: 616
Joined: Mar 2010

I read Robert Marckini's book and learned about BOB from it. I'm sure you and all of the members of BOB are GREAT guys, but frankly there are other ways that I'd prefer to bond w/you.

Having PCa in common is bad enough, but basing a relationship on the fact that you all have had a balloon stuck up your behind 40-45 times while being zapped w/protons while encased in a body cast just isn't what I have in mind when I think of "male bonding" and, I for one, am not sorry that I missed it.

ROTFLMAO!!!

Trew
Posts: 891
Joined: Jan 2010

SSW, Getting the balloon inserted into the behind is a lot more fun than the way you make it sound. Believe me, I was there and you really missed a great experience!! All patients rave about it. Itsort of gives you the rush of an enema feeling without the mess. There, that should settle your doubts about the pleasure of such an experience. Nice is as nice does. I know, a meaningless statement, but I use it to elevated the value of the balloon experience above the so-so stuff that we face every day.

Swingshiftworker
Posts: 616
Joined: Mar 2010

I could take this "discussion" about balloons in the behind to another level, but I just won't go there. Thanks for your condolences, but it's just one of those GREAT experiences that I'll have to miss out on in life. ;)

hopeful and opt...
Posts: 1282
Joined: Apr 2009

I heard of recreational drugs......I guess, the future is now recreational balloons.

Trew
Posts: 891
Joined: Jan 2010

The fun part is in the end after treatment when all male parts are still loaded and functioning. So, to avoid a balloon up the rectum, you would give up WHAT?

Besides, it very well may be a whole lot more fun than it sounds.

Feb2010
Posts: 51
Joined: Mar 2010

I even received a souvenir balloon. Unused of course!

Trew
Posts: 891
Joined: Jan 2010

I want to clarify something for everyone: That balloon up the rectum really wasn't THAT much fun.

I don't want anyone to come to the wrong conclusion about that unique experience. like a lot o thngs connected to cancer, it is just something else that one must endure along the way.

ROTH
Posts: 1
Joined: Oct 2010

what were your reasons for choosing proton therapy instead of radiation therapy?

do you know of any side effects? Also is the equipment up to date?
would appreciate you and the other posters giving me any information.

Swingshiftworker
Posts: 616
Joined: Mar 2010

Roth:

Proton Beam Therapy (PBT)is just a different form of radiation and the side effects from PBT treatment are similar to other forms of radiation used to treat prostate cancer, such as brachytherapy (BT), IMRT and EBRT and CyberKnife (CK).

The short term side effects of radiation treatment most commonly include fatigue, urinary urgency or incontinence, ED, bowel movement irregularities and rectal bleeding. The long term effects are unclear, but people suggest that collateral cancers -- such as bladder cancer -- may be associated with prostate cancer radiation treatment.

One short-term side effect that I've seen reported specific to PBT is some focused skin irritation (or burning) along the thigh at the point of delivery because the proton beam is focused at only one point of entry and does not move during treatment. I don't think that this is a significant problem w/PBT, but it is something unique to PBT.

I assume there have been some fine tuning and upgrading, but I don't know if there have been any major advances in PBT technology since it was first used about 10 years ago. However, here have been other technological advances in radiation treatment of prostate cancer that I believe have improved upon PBT, specifically CK, which you should explore if you are looking into PBT as a method of treatment.

There are other threads on CK already posted on this forum that you can do a simple search for and you can get further info from the Patient's Forum on CK's manufacturer's site at: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

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