Feedback from those who've had Proton salvage treatment from Loma Linda

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orickster
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 1/5/2010 8:52 PM (GMT -6)   
I'm taking the advice from those of you in the forum who suggested I receive two opinions. I'm doing just that. Received a call from Loma Linda tonight requesting more info and insurance information. I will be also sending the results of the PET/CT scan I do on Thursday as well as the ultrasensitive PSA results I received. Should hear back from them in a week. Just wanting to know if any of you have dealt with Loma Linda and those of you who have undergone salvage proton therapy with Loma Linda. I know they are the pioneer in this field. M D Anderson told me they do not do proton salvage, maybe because they are new to this technique there, and Loma Linda says they do. So I'm deciding on proton or IMRT. Just need to hear from some of the members here on this forum and their recommendation as to the treatment they perfer. Thanks.



Rick

Hi orickster, Please Read,
I have to pull a moderator moment on you. We have to limit our signatures to far less lines than you are using in it. But I have a work around for you. Start a new thread and list your signature information in it. Then you can use a link to that thread so that you contain the information in your signature. At HealingWell, signatures are limited to ten lines. But we have some levity in the prostate cancer forum because our situations may require a bit more information.

Reasons to limit signature size:
1> Large signatures make threads difficult to read.
2> Large signatures dominate our posts and make the point your trying to make less valuable.
3> We respect the other forums limit on signatures as much as possible.

Thank you for understanding. If you need any assistance please let one of the Moderators know. We'll be glad to help

Post Edited By Moderator (TC-LasVegas) : 1/7/2010 12:58:14 PM (GMT-7)


dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 1/6/2010 8:29 AM (GMT -6)   
Rick:  I looked into proton for SRT and my insurance company gave me some grief about it, I admit I didn't follow up too much because I had a very good IMRT practice just around the corner form my house.  For the proton stuff I would have had to travel and stay in the area during the week. 
 
Know that there is a little different protocol for proton than most IMRt treatments, with all proton I believe you receive an endorectal balloon every treatment, most IMRT places don't do that.  The IMRT practice that I went to happened to also do the balloon treatment.  It was explained to me that the balloon protected the back wall of the rectum and also removed the bladder from the radiation field.  It made sense to me and was uncomfortable but not unbearalbe.  Also remeber that most radiation issues don't pop up for at least 3-4 years post radiation so anyone of us who tells you that everything is fine and we're out of the woods is probably a little premature in their opinion.
 
I go to a prostate cancer group meeting monthly and the proton guys speak very highly of the procedure and particulary the Loma Linda guys.
 
David
 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HDRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 
12/05/08-PSA <0.02 Six months after surgery 
3/02/09-PSA <0.02 Nine months after surgery
5/02/09-PSA .10
8/17/09-PSA .21 Begin HT and set up for SRT to begin in 2 months.
 


flippin out
Regular Member


Date Joined Mar 2006
Total Posts : 137
   Posted 1/6/2010 6:40 PM (GMT -6)   
Been there done that :
They are the Pioneers in Proton and have the most experience I had the option Tomo Therapy or proton
as I understand it Proton goes to the effective area while other radiation will generate more of the unwanted area and can cause damage I went for Loma Linda it was a very pleasant experience and so far so good I return for post PSA # 4 next month, as for Anderson I too was rejected the thoughts were numbers are all the rage and I was a risk going for salvage rather than the initial treatment.
Good luck no matter were you wind up the radiation all kills the beast .
50 Diagnosed as type II Diabetic
54 Cancer Detected
PSA 8.+ Gleason 7
55 DaVinci City Of Hope California
57 Cancer rise in successive PSA's
57 Proton Radiation Loma Linda Medical Center California
Aug 09 PSA 0.06


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 1/6/2010 9:42 PM (GMT -6)   
Rick....This board is very helpful, but does not have a ton of Proton patients....likely few who have done salvage radiation... If the moderators will allow me, I would refer you to the Proton Bob website at protonbob.com Bob Marckini's email address is under the "contact" section of the site... If you asked him, I bet he could put you in touch with several who have done salvage at LLUMC.  Also you could join the Yahoo group on Protons http://health.groups.yahoo.com/group/protoninfo/
 and ask the members there about any salvage experiences.
 
dave
Dx T1c in April, 2009 at 45 years old after recent PSA tests ranged from 2.93-3.25
2 of 14 cores positive at 5% and Gleason 3+3... 2 cores taken from a "protuberance" were "ASAP"
Proton radiation at LLMC May-June 2009


STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 1/7/2010 2:08 PM (GMT -6)   
My father did proton at LL about 10 years ago, 25 years post surgery, and was very pleased with the results. I can't find out more than that since he died from something else last year. I believe he took the proton option because it had less impact on surrounding tissues and, having lived practically next door to LL for several years, he was very comfortable with the hospital.
Diagnosed at 54
PSA 8.7 Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7 Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09 Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5
Catheter out at 2 weeks no nighttime incontinence Pad free week 5
PSA 6/6/09 <0.1 PSA 9/10/09 <0.1


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/7/2010 2:58 PM (GMT -6)   
Hi orickster,
I have to pull a moderator moment on you. We have to limit our signatures to far less lines than you are using in it. But I have a work around for you. Start a new thread and list your signature information in it. Then you can use a link to that thread so that you contain the information in your signature. At HealingWell, signatures are limited to ten lines. But we have some levity in the prostate cancer forum because our situations may require a bit more information.

Reasons to limit signature size:
1> Large signatures make threads difficult to read.
2> Large signatures dominate our posts and make the point your trying to make less valuable.
3> We respect the other forums limit on signatures as much as possible.

Thank you for understanding. If you need any assistance please let one of the Moderators know. We'll be glad to help
Prostate Cancer Forum Co-Moderator

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