Just completed treatment

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PAN
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 5/27/2008 11:19 PM (GMT -6)   
Last Friday I finally returned home after spending the last 10+ weeks in Loma Linda California where I received proton treatments for Pca. Last November my life trajectory took an unexpected turn when I was diagnosed with prostate cancer, PSA 6.3 and Gleason score of 7. I, like all on this board, went to search for answers mode and spent countless hours researching my solution. I came to the decision proton therapy was my path.

As i was going through treatment at Loma Linda it dawned on me I should keep a record of not only my progress through treatment but also of my thought process prior and during treatment. So I wrote a blog of my treatment experiences to date (http://panajar.blogspot.com). I hope as time goes and I see changes I would add to the blog with the hopes it could be of value to those going through the decision process. Please feel free to read it and to give the address to any who may benefit from it.

In general the treatments were easy with minor side effects. The side effects I had showed up around the halfway point. I started to have hesitancy during urination and urgency only at night. Why at night is good question but without an answer. The side effect have been easily controlled with Flowmax which I am still on. These side effect were common with my fellow patients.

Other than the above side effects the treatments caused _no_ changes in diet, life style or sexual activity. I know there is no guarantee things will stay the same. I am keeping my fingers crossed. In general I came home in better physical shape than when I left for treatment just because i was more active having joined a gym, and started playing tennis.
PAN
Highest PSA 6.3
Gleason 7 (3+4)
Pre treatment PSA 4.5
Treatment Proton Therapy Loma Linda
Blog: http://panajar.blogspot.com

Post Edited (PAN) : 6/4/2008 5:50:59 PM (GMT-6)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/27/2008 11:30 PM (GMT -6)   
Welcome home and good health!

swim
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/27/2008 11:50 PM (GMT -6)   
Pan-
I checked out your blog and wanted to thank you for sharing your story. It sounds like you had an incredible experience and definitely squeezed as much fun in as you could. Good for you!!! Welcome home and I'm glad you found HW. Best wishes in your recovery and a lifetime of undetectable PSA's!

Chayna
Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
Praying for a cured dad. First PSA 3 months!


Co-Moderator Prostate Cancer Forum


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/28/2008 1:36 AM (GMT -6)   

  tongue    Hi ~ PAN and Loved Ones,

 

Welcome   to…   ~ HealingWell ~

 

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The information (link) listed above is to help you get around the forum! 

 

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Post Edited (TC-LasVegas) : 5/28/2008 12:43:15 AM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/28/2008 1:54 AM (GMT -6)   
Hi PAN,
Welcome to the best site on the web for patient to patient interaction. You sound like your treatment went well. Your brother, JP ~ Is a very dear friend of mine. He and I have worked together most of the last 25 years. Your blog had that picture with his daughter, and I about flipped. Small, Small world. Well again, you are very welcome here. Sorry you are here ~ but it's great to add another Proton patient.
 
You and I have met.  But it was a long time ago '86?

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator

Post Edited (TC-LasVegas) : 5/28/2008 12:59:07 AM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/3/2008 12:11 AM (GMT -6)   
Peter,
Richard ~ Smilingoldcoot ~ has chosen a similar path. You two should share your journeys. Richard is using the treatment you posted on my web site in my guestbook. Photons and Protons. A great combination. Thank you for posting at my site. As I said, I just about dropped when I saw youe excellent site with a picture of my buddy there. Another friend of JP and I is a man named Ron. He too went your rout with protons. Take care and good Healing...

And God Bless you.

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 9 '08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 6/3/2008 11:05 AM (GMT -6)   
PAN
 
Thanks and welcome.
 
I realize that not all can afford to travel for proton treatment but we should take the opportunity to spread the word about proton and it's benefit without most of the side affects of other treatment options.
 
I will be placing your blog on my site if you have no objection. 
 
Again welcome and so glad your treatment went so well.
 
Richad  yeah tongue yeah
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
U of Florida Proton Therapy Institute
5/2/2008 LUPRON & Casodex
IMRT to start 5/16/2008 for approx 4 weeks with Proton to follow for approx 4 weeks
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 6/3/2008 2:06 PM (GMT -6)   
Pan

Congrats on finishing up your treatments, here's hoping they get you to a lifetime of 0's. I finish my final proton salvage radiation treatment of 7 1/2 weeks tomorrow and know how you feel to get past this daily event.

Good Luck
Norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Surgery Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3
March 27th PSA .4 Begin Salvage Radiation April, 14 2008
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 6/3/2008 3:33 PM (GMT -6)   

Pan:

Good job on your blog about your experience with Loma Linda and proton.

You stated  "Other than the above side effects the treatments caused changes in diet, life style or sexual activity" - was this a typo?  I found the treatments made NO changes in these areas.  Best wishes to you both.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - 2001 - No side effects.  My journey is at: http://www.healingwell.com/community/default.aspx?f=35&m=727565
7yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 6/3/2008 7:10 PM (GMT -6)   
way to go PAN, and congrats on the treatment. I to hate you have to be here, but since you are here welcome. I am going to check out your blog shortly. I have a friend that is in FL getting proton treatment. Stay in touch and let us know your progress.

peace love and joy
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


PAN
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 6/3/2008 9:11 PM (GMT -6)   
Dutch - Yes that was a typo which I will fix as soon as I find it...Thanks
 
Smilingoldcoot or anyone else - Please if you find my blog of value please feel free to link to it.

Regarding affordability
The cost is high if it is not covered by insurance. I was very lucky my insurance, United Healthcare, covered all but a minimal amount of $2850. Others were covered by Medicare, some by the VA and others to a lesser extent by insurance. The people who had it the worst in terms of cost, ~$150,000, were those coming from out of the country of which there were a surprising number. Two guys from outside the country who became good friends, one from Australia and the other who from France and who had worked on the Super Collider.

In the next few days I hope to have my blog updated to give you some idea of the treatment results to date. In short I feel strong full of stamina with no detectable side effects other than I am still on Flowmax. My expectation is to be able to wean myself form the need of Flowmax over the next few weeks.


PAN
Highest PSA 6.3
Gleason 7 (3+4)
Pre treatment PSA 4.5
Treatment Proton Therapy Loma Linda
Blog: http://panajar.blogspot.com

Post Edited (PAN) : 6/3/2008 8:14:57 PM (GMT-6)


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 6/3/2008 9:43 PM (GMT -6)   
Great news, I hope you have 0.00's from here on in, we all are here for you.

Randy
46 you when diagnosed, now 47
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Cialis 5 mg every night.
Success with BiMix


PAN
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 6/4/2008 3:59 PM (GMT -6)   
Dutch you found the typo in my blog "Other than the above side effects the treatments caused changes in diet, life style or sexual activity..." I looked for it last night but couldn't find it. Do you happen to know which of the articles I wrote had it in it? I did find a number of other grammatical errors I hope I fixed all of them. I find it very hard to see errors I make in my writing unless I can give it a number of days between readings. Thanks for the help.
PAN
Highest PSA 6.3
Gleason 7 (3+4)
Pre treatment PSA 4.5
Treatment Proton Therapy Loma Linda
Blog: http://panajar.blogspot.com


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 6/4/2008 4:31 PM (GMT -6)   

Pan;

It wasn't in your blog - it was in your initial post in this thread in the last paragraph.   Dutch

 



KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 6/8/2008 10:49 PM (GMT -6)   

Pam, Welcome to Healing Well. Good to see another Loma Linda Proton Brother  here. Haven't read your Blog as yet, but I'm sure it will be familiar. Continue your Healing and Live Life.

 

Ken


Diagnosed with a Gleason 4X3. Second opinion at Stanford came back as 3X4, 1 out of 7 samples, Left Side. DRE showed Normal. Before Biopsy Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. 1st PSA 4 Months 3.4, PSA at 8 Mo. 1.7. - 1 Yr. PSA 1.8 ( Different Lab ) 4 th PSA Slightly up at 2.19- Free PSA at .33 probably due to BPH. 1 year and 11 mo. Urologist discovered Scar Tissue in the uretha causing frequent urination with burning. Bladder not emptying completely.
Scheduled ( 12/17/07 ) to have the scar tissue sliced to open up the restriction. Good news is PSA is down to 1.14.
Urethrotomy performed. Flow much improved. No more burning.

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