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Posted 6/19/2007 4:45 AM (GMT 0)
Hi to all of you folks here. This is my first post here, do not intend for it to be the last. I have been a member for a few weeks and have been working on a "My Journey" post that I would like to put up here, but it is not finished yet. There are some fine stories here, both inspirational and sad. Such is life with PCa.

While reading here lately, I have seen a lot of newly diagnosed come here and post and receive some great advice and info, yet most here have opted for surgery and a few have had radiation treatment. I am seeing more posts asking about Proton Beam Treatment and notice that pcdave has done most of the answering in regard to that modality.

I am putting this post up with the idea that I will follow up periodically as I move into treatment phase and also talk about the logistics of having treatment 1300 miles away from my home in the Seattle area. I am posting this from work this evening and do not have a lot of time tonight so I just want to start this off by saying that I first heard mention of Protons at the yananow.net website. This was one of the first places I found after I was diagnosed and came home to my computer and Googled "prostate cancer survivors". You notice I included the term "survivor" in the search. I am very interested in one day being described as same. Each of the testimonials on the Yana site for Protons mentioned the ProtonBob.com site. I went there and read and read and finally contacted Bob Marckini. He is getting swamped these days with requests for info and referred me to the list of people who have agreed to be mentors for Proton Therapy. Well it turned out that several people on that list were from the Seattle area, which made contacting them even easier for me. Trust me it is NOT easy just cold calling someone and asking if they would discuss their cancer treatment with you, a total stranger to them. But one of the great things about this cancer and the people diagnosed with it, is the bond of commonality that we all have. It transcends much of the reserve that we otherwise have with strangers.

To make a long story short, I ended up talking with 2 gentlemen over the phone, one who was treated several years ago and is slightly older than I am and one who had finished treatment just a few months ago and is a couple of years younger than myself. Their testamony of itself was enough to convince me that this was the way I needed to go for treatment. I also ordered Bob M.'s book through Amazon and read the whole thing in a single afternoon. This has also helped to reinforce the opinion that I had made the right decision for me. Thanks for listening and if anyone has any questions about Protons, I will be glad to answer with what I know so far and what I hope to learn soon.

John
Posted 6/19/2007 10:39 AM (GMT 0)
Greetings.

First post. Notified of PC on 13-June-07. Current age 52. Biopsy results as follows:

PSA 4.8, Gleason score=6. 6 cores sampled, 1 core positive, right base. Stage T1C.

Family history. All four of my mom's brothers had PC when they were in their late 60's or early 70's. For all I know they had much sooner and it was finally detected at that age.

Game plan. After much reading, I am leaning towards Proton Radiation Therapy (Jacksonville, FL center). Robotic Therapy is also high on the list. But having worked in hospital environments since 1986, anything invasive has the potential for additional and unrelated risks. Though the possibility of that is about zero nowadays, IMHO. My other thought is the effects of urinary, bowel, and sexual function. No matter what treatment is pursued, there is going to be some effect to those three, but it seems that the stats are minimally better overall with Proton Thearpy--at least from what I have read.

I am having a CAT scan and some other tests, so depending on those upcoming results the possibility exists where it may be necessary to rethink treatment.

I have read one other thread here pertaining to failed radiation treatment, which I found quite informative. I think this will be a good site for ongoing threads pertaining to PC.

The following two articles are what primarily caught my eye about Proton Thearapy. Needless to say, more reading and research to be done.
Posted 6/19/2007 1:19 PM (GMT 0)
Greetings John

It is refreshing to hear that some other PCa patients are considering Proton Radiation Therapy. I assume that you read my thread entitled "Proton Radiation Therapy--My Journey With Prostate Cancer which goes into detail as to why I selected that treatment. Early on I focused on Robotic Surgery and then zeroed in on Proton Therapy. It was difficult to get more definitive information about Proton Therapy, other than through Loma Linda. Luckily, new Proton Therapy centers have been opening up in the past few years in the US and more will follow. Proton Therapy is not only a recommended therapy for PCa, but also for many other types of cancers for adults and children. It is especially beneficial to children with brain and other other cancers because it is a safer form of radiation and more easily tolerated by children who tend to have more side effects from radiation because of their youth. Luckily I was able to network with someone who posted their proton radiation jounney on the "You Are Not Alone" website (www.yana.com) who was treated at the Proton Treatment Center where I was eventually treated on the east coast. The person who I networked with was extremely helpful to me and it convinced me beyond a doubt that Proton Therapy was my treatment of choice. Loma Linda was 3000 miles away and I decided that I wanted to be treated nearer to my home. I had no reason to believe that my proton treatment would be any different than at Loma Linda. However, Loma Linda does offer a wonderful program with a very personal touch whereby those patients treated at the same time network and interact together in a warm friendly environment. That was the only thing missing from my treatments that I would have liked. Needless to say, the treatments are the most important thing.

I met Bob Marckini while I was being treated. He is a great guy who has totally dedicated himself to helping other PCa patients. He takes personal phone calls day after day and I know he is really swamped and probably over extended. I believe he was in his mid to later 50's when he was treated at Loma Linda several years ago and his PSA remains at a low level. It looks like your stats are close to mine which makes you a good candidate for Proton Therapy. I am, however, 14 years your senior! You have to be in a earlier stage of PCa (i.e., at least a Gleason of 7 or lower and the cancer confined to the prostate) or most of the Proton Treatment Centers will not take you as a patient. I believe that Loma Linda does make some exceptions to this rule, especially for those with recurring prostate cancer.

Best of luck in your final decision making process!

Dave
Posted 6/19/2007 1:52 PM (GMT 0)
Hi New Journey

Thanks for your contributions to Proton Therapy here. The 2nd link on your posting about Proton versus Photon Therapy was very interesting and informative--I had not seen that article before. There is no question that Proton Therapy continues to evolve and even my radiation oncologist, who is a leader in his field, admitted that we need definitive long-range studies comparing Proton and Photon results for PCa patients. Needless to say, without such studies and based on the information at hand, I felt more comfortable in selecting Proton (rather than Photon or x-ray) Therapy.

You made the following comment in your posting: "My other thought is the effects of urinary, bowel, and sexual function. No matter what treatment is pursued, there is going to be some effect to those three, but it seems that the stats are minimally better overall with Proton Therapy--at least from what I have read." Compared to the side effects from surgery (and you can read all of the testimonials here and not all of them are encouraging), I believe that the potential side effects, both short and long-term with Proton Therapy, are substantially better overall compared with surgery. Nevertheless, the important thing in deciding on a treatment is that you feel it is right for you no matter what the side effects are. For many PCa patients, having their prostate removed is the only treatment that will give them the level of comfort they want to achieve (i.e., believing it is the best way to hopefully eradicate their cancer). In my case, it was Proton Therapy.

Best of luck to you in making your final treatment decision. Keep us informed!

Dave
Posted 6/19/2007 5:12 PM (GMT 0)
John:

I will be looking forward to your discourse on your proton experience at Loma Linda and know it will bring back alot of wonderful memories of our stay there. It will truly become your "home and family" away from your home and family. The medical staff and support services are top notch - they have developed a community atmosphere for the proton "guests" that would be hard to find elsewhere.

As for the treatments, I think you will find them quite easy to tolerate with few if any side effects - looking forward to your future posts.

Best of luck.

Dutch
Posted 6/19/2007 7:13 PM (GMT 0)
Thanks all. The only treatment decision to be made for me at this point is on the Loma Linda side. I have already committed to this as evidenced by my purchasing airline tickets to travel there for the final consult. I guess it remotely possible that they may reject me, but at this stage and from all my conversation with them I don't think that will happen.

Dave I have a question for you about your treatment. Do you think the minimal side effects you had were because no balloon was used during your treatment or is it just the nature of the beast. I ask because I see many who are treated at LLMU who say not just minimal SE, but zero SE.

Dutch I have tried to identify you on the list but no luck. If you do not want to reveal any info here to make that possible I understand.
Posted 6/19/2007 8:08 PM (GMT 0)
Hi John

I wish you the best of luck in being accepted at Loma Linda--I hear nothing but praise for their all encompassing treatment program. Your question to me below is an interesting one! I don't think that the rectal balloon, whether used or not, should have anything to do with any side effects during treatment. They did not use the balloon where I was treated and I seem to recall that someone told me that they no longer use it at Loma Linda (although I could be mistaken). The theory of using the balloon was supposedly to keep the radiation away from the rectal area. I was told that if the radiation beam was effectively placed that the balloon was not necessary. Also, I was told that the balloon had a two way effect. Perhaps helping to protect the rectal area, but the balloon could press tissue on the other side of the balloon closer to the area being radiated. Therefore, it could be considered a "double edge" sword. Eliminating the balloon certainly makes the treatment more pleasant!

During my treatments, I talked to some of the guys who were being treated at the same time. What I found out is an inclination to say that they have zero side effects if in fact they do have some side effects, but they do not consider them bothersome. I found that most of the guys had one or more of the following side effects to some degree (of course there may have been some exceptions): urinary, bowel and fatigue. It is hard to believe that the side effects would be zero. That's why I pressed some guys when they said they had no side effects and then they admitted that they had something, but no big deal.

I had more frequent urination, but never to the point that I didn't think I would make it to the bathroom. I seemed to experience more frequent urination later in the day and during the night. On occassion, I had to urinate frequently during the night, but not necessarily every night. I did take Flomax starting about one week into my treatments. I felt that it did help some, especially in increasing the flow of urine at times, but it was hard to tell what the overall benefit of Flomax was for me. The flow of urine was slow at times and there was some very mild burning. My urination has returned to my pre-treatment norm (no frequent urination). In fact, my flow now seems stronger than ever at times.

My bowel movements changed quite a bit during treatment (much more frequently and in small quantities). I found this very annoying at times. After treatment, my bowels returned to my pre-treatment norm which I am very happy with (usually once of day). One thing that may well impact bowel moments during treatment is the recommendation to substantially reduce fiber in your diet from cereals, fresh fruits, fresh vegetables, etc. While I did not eliminate them, I am sure that the reduction made a big difference in my bowel movements.

I did not experience any chronic fatigue during my treatment. I did experience some fatigue at times, but it was probably more related to stress or not getting enough sleep at times. There was one younger guy who was treated at the same time as me, who continued to work every day, who claimed to have a lot of fatigue. I am sure his work had a lot to do with it.
When you are retired you have the luxury to take it easy during treatment, if you so wish!

Keep us informed as your journey continues!

Dave

Jayadub said:
"Dave I have a question for you about your treatment. Do you think the minimal side effects you had were because no balloon was used during your treatment or is it just the nature of the beast. I ask because I see many who are treated at LLMU who say not just minimal SE, but zero SE."
Posted 6/20/2007 12:30 AM (GMT 0)
Hi Bluebird, Thanks for the welcome, it is appreciated.  John   ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 5 Posts deleted and grouped here (short version of discussion) & 1 edited: with permission (Help issues on this thread fixed & not related to topic)   Thanks John!! Lee: Help!   Having to scroll all the way to the left to see posting?   Is it just me? John: The length of the direct link in 2 nd posting is going into word wrap. Lee: Yep ~ Fixed it!!! John: Bluebird, Good job. Very elegant fix to that problem. That is why you are the moderator here. Thanks Lee: John…”your keys” helped me ~   Working together!!   Thank you!!   Post Edited By Moderator (bluebird) : 6/21/2007 4:54:31 AM (GMT-6)
Posted 7/4/2007 4:46 PM (GMT 0)
I am off on my treatment journey this afternoon, on our day of celebrating our creation as a country. It is forecast to be 103 degrees in Loma Linda today and approaching 100 for the rest of the week. Hoping to get down to LL in time to drive the few miles to Redlands, CA as I understand they put on a killer 4th of July fireworks show at the University Stadium. Should be fun in the sun. Tomorrow Cindy and I celebrate our 27th anniversary. I'll try to post some initial impressions as I am able to access a computer. Have fun, be safe and thanks for being here.
Posted 7/4/2007 8:29 PM (GMT 0)

Guess I might as well chime in here, as besides Dave and Dutch I'm the only other Proton Beam patient here. I know you will be pleased with the way you are treated at Loma Linda and very pleased with the way your body reacts or doesn't react to the treatment. I think they still use the balloon at Loma Linda at least they did up to a year ago. It wasn't a big deal for me and easy to tolerate. I think there is a positive benefit from using it, but I guess you would have to try it both ways to really know. I had very little fatigue and went to the gym most days. Some guys played golf every day for the ten weeks. My bowel movements had no change at all. Frequency of urination was a pain in more than one way and still is. My new Urologist has me on Detrol and we'll see if that helps. Other than that I'm pretty much back to normal. Sex is still good for a 76 yr old. Orgasms are not dry, but fluild is much diminished. I wish more guys would explore some kind of treatment other than surgery if sex is an important factor for them. From what I read here it sometimes is a troubling problem for them.

Anyway good luck on your Proton Journey. Hey Dave let us know your new PSA after the 7th.

Ken

Posted 7/6/2007 1:28 AM (GMT 0)

Hello John,  I write this to calm your nerves about the balloon.

It has been my policy to be non confrontational and to never recommend a treatment. 

I chose and experienced Image Guided IMRT with Balloon.

I probably researched the balloon more than anything else since I hated the idea so much.  I assure you, it IS best practice.  It's also tolerable.  Check out the Brotherhood of the Balloon. 

Best,

Bill

I expect that my buddy pcdave will have several paragraphs of carefully done wordcraft to counter what I have said.  As always, I welcome his opinion and care.

Posted 7/12/2007 3:12 AM (GMT 0)
Thanks to all for the expressions of care and thoughts of well being. They certainly have helped. I had hoped to be able to update this thread as I went through the process of preparing for treatment at Loma Linda last week but had only limited computer access for the time spent in California. I will say that the facility at LL is fantastic, as are the people. I am still collecting my thoughts, as the 3 days that Cindy and I were there were full with consultations, pod construction, body scans, housing search, and celebrating our 27th anniversary in 100+ degree heat.

I start treatment on July 26th (note to bluebird ) and will be travelling from the 22nd-24th, as we are driving down from Seattle to Loma Linda along with one of our feline friends, who will be staying with me for the duration of my treatment. I have a letter from the attending physician at LL stating it would be beneficial psychologically for me to have a pet during treatment.

Thanks Jetguy for the balloon support, but I found that to be a non-issue as you did. Made a few jokes with the 2 guys who did the pod construction and they were both caring and careful during the entire process. I will have some time after I arrive in Loma Linda to build on what is already posted here and will do so as I am able to.
Posted 7/12/2007 5:13 PM (GMT 0)
LOL,
I have a letter from my wife that says you should take the cats. In fact if she read this thread, she just might tell me that we need to go to LL and make sure they are doing well. We have three of them and I get the smallest piece of real estate in the bed room. Hope all the well stuff stays that way. Take care and good luck on your treatments.

I just complete treatment 23 this morning on IMRT. No side effects yet.

Tony
Posted 7/13/2007 3:08 AM (GMT 0)
Thanks Tony and Bluebird,

Murphy is a cutie.

Cindy and I have 5 cats, all rescue cats. They were all saved at various stages of development in their lives. George and Tiger are 2 brothers who were abandoned at age 3 (now 7) by owners who claimed they had to move out of state and taking the 2 along would be a problem for them, so turned them over to a rescue shelter. Sophie was less than 6 months old (now 4) and a feral rescue (we think) who had apparently been locked in someone's bathroom for some time before placement in the shelter, as that is where she is most affectionate, when she shows any affection. Katherine and Spencer were feral kittens who were rescued with 6 siblings who all died of distemper. They are both 3 now and it is Katie who will be traveling with me.

They are all very sweet and give and receive tons of love for and from the both of us.
Posted 8/3/2007 3:29 AM (GMT 0)
Thanks to everyone for your thoughts and well wishes. Had a good nights rest after driving for 2 1/2 days and am settling down in our little apartment. ‘

Had some good news this morning regarding Aetna and disability payments for the time I am gone from work to recieve Proton treatment.

They have agreed to make weekly payments starting this week, so that will help in a small way to mitigate my out of pocket expenses.

A special thanks to MamaBluebird for creating this thread and for your friendship.
Posted 8/3/2007 7:23 PM (GMT 0)
Hi John,

Just read your postings and want to join everyone in wishing you well with your treatments.
Yes, Having KK with you is good therapy...cats are Kool. tongue

All the best,
Susan
Posted 8/4/2007 5:44 AM (GMT 0)
Hi to all and Thank You for the well wishes. I am having the time of my life down here in Loma Linda and while I am missing Cindy and the rest of our furry feline companions, Katie and I are doing well on our own. I am making some great friends and participating fully in the entire process of being treated at this wonderful facility. I am grateful every single day for the opportunity to be here and have to really pinch myself when I am being treated to remind myself that Yes I AM being cured.

Bluebird, I still owe you some pictures and I am planning to throttle back a little this weekend in order to do that as I promised. You are so kind and patient as you wait for me to do so. I will also post a couple here through links to photobucket for any who are interested. I have a great picture of Katie to put up for all to see how concerned she is with the treatment I am receiving.

Susan, Thank You for the thoughts. Having the support of others is all important in approaching any treatment and having Katie Kittie has been doubly helpful to me as my wife returned home on Tuesday and won't return till the 17th of this month. She gives me someone to care for and about while I am here in So. Calif.

I will update this thread this weekend with my thoughts and feelings on Protons and the entire Loma Linda process. Take care all and will post again on Saturday the 4th.
Posted 8/4/2007 5:03 PM (GMT 0)
John & Katie,

This is wonderful…it will give others who are in the process of making decisions ~ a little insight into the world of Loma Linda…

Thank you for these wonderful pictures!!! Continue to take care of “You”… and special hugs for Katie too!!! What a precious kitty!! Kiss her on her whiskers from us!!!

The opportunities and the options we have are amazing and your sharing is the best gift you’ve just given all of us!!!!

Take care ~ dear friend and keep us close. Cindy ~ remember we are with you too!!!

Warm thoughts and gentle hugs… from Lee, Buddy, & Murphy!
Posted 8/4/2007 6:20 PM (GMT 0)
John ~ I see you signed on!!!!! Here’s a special Hug… Please consider posting the other pictures here!!! Buddy is also 100% in favor of you posting them!!!! Enjoy the weekend… Lee & Buddy
Posted 8/4/2007 6:30 PM (GMT 0)
Thank You Lee,

Hugs are always appreciated

I would be glad to post the other pictures later today. I plan to visit some of the other facilities at Loma Linda today and take some more pictures. I really would like to get some pictures of the treatment rooms and the clinic and treatment level lobbies. I am glad you have enjoyed what I have put up so far. I'll check back in later.

Hugs to Lee & Buddy and Murphy too
Posted 8/4/2007 11:26 PM (GMT 0)

John:

Dutchess here.  Boy, do those pictures bring back wonderful memories - looks like you are staying at our old "home away from home" - Centrepointe.  Did miles and miles of walking around that place.  Will be  looking for your post tomorrow.

DutchESS

Posted 9/24/2007 3:30 AM (GMT 0)
Hi Lee and Buddy and all here,

I have been busy the last 6 weeks or so with the whole Loma Linda experience. It is almost over for me as I have but 4 treatments remaining and should finish this Thursday. I hope to head back home on Saturday. As I type this I am waiting to go pick Cindy up at Ontario, CA airport. Her flight was delayed for over an hour and a half and currently is scheduled to arrive at 9:48 P.M. PDT. She will be here for the last days of treatment.

Katie Kittie, who has been with me the entire time, is doing well and I have appreciated her love and affection and the distraction she has provided by allowing me to care for and play with her. I am pretty homesick at this point and can't wait to start back to Seattle. Once I arrive home I have tons of photos and notes and a journal of sorts that I kept while here that I will clean up and post to the web site that I created called John's Total Proton Experience, which Lee has seen in rough form, well at least some of the pictures.

The last day or so I have been having some urinary issues, certainly from the accumulation of protons over the last 8 weeks. I am attributing it to the fact that after treatment 28 I have been treated with a different bolus to focus the protons on a smaller area with the same rad dosage. For the first 28 treatments the seminal vesicles were included in the treatment field, for the last 16 they are not. If this is the worst I have to face, it meets or exceeds even my expectations for side effects from treatment. If the issue continues I will see my Dr. tomorrow in the morning. Thanks for caring and I should post here again soon.
Posted 9/24/2007 3:34 AM (GMT 0)

Take this special HUG and share it with Cindy and Katie Kitty.

It truly is good to hear from you!!!!  Thank you..... Hugs!!!!! and more HUGS!!!!!!! tongue

Posted 9/24/2007 3:43 AM (GMT 0)
Thank you Lee. Sharing will take place in an hour or 2. Here is a hug back tongue . I have only logged in a couple of times in the last 4 or 5 weeks and I log in tonight to find you back at full force. Thanks for thinking of me and I will hope to see you and Buddy the next time you head up to Seattle.
Posted 9/24/2007 11:03 PM (GMT 0)
John:

Good to hear from you - as we expected, you would be kept busy while at Loma Linda. Sounds like all is progressing well and know you will be glad to get home. Take care and look forward to your story.

Dutch
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