Paul's Proton Treatment Blog

Last Two PSA Tests

2011-12-07T09:27:00.000-08:00

Looks as if I forgot to post last year's PSA results (oops!): 0.1 on 11/15/2010

This year's test was taken yesterday, 12/6/2011. Result: 0.2

It appears that the nadir was reached in 2010. It went up 0.1 from 2010 to 2011. This is to be expected, we are told. We're very grateful for Paul's good proton treatment outcome at Loma Linda.

It seems like an eternity ago but it was only 4 1/2 years (April-May 2007).

Happy Holidays to anyone reading this blog. God Bless!

29 Month Post Treatment PSA

2009-11-08T16:36:00.000-08:00

Paul had a PSA test on 11/3/09. The urologist had wanted to put him on an annual PSA cycle in June but he needed a fresh test to report to a government agency for a license he has.

His 29 month PSA was 0.2 ng/ml, down from the 6/1/09 reading of 0.3 ng/ml. Still heading in the right direction!

We're very grateful that he was able to have proton radiation treatment in 2007.

Two Years - still going down!

2009-06-03T08:33:00.001-07:00

Paul's two year post proton treatment PSA was taken on 6/1/2009. To our delight, the PSA is still on the decline -- 0.3 ng/mL.

This is, by definition, a new nadir. We are very thrilled!

16 Month post proton PSA - still heading in the right direction

2008-09-27T10:00:00.000-07:00

Paul had his 16 month post proton PSA test on 9/24/08. The result is 0.4 ng/ml, down 50% from the March 2008 reading of 0.8.

Needless to say, we're very happy about this. I'm especially pleased as I've read at least one study that cites a nadir of less than 0.5 ng/ml as being predictive of better long term patient outcome.

Here is the Loma Linda study I cite:

http://www.ncbi.nlm.nih.gov/pubmed/9788407

Carol

10 Month Post Treatment PSA

2008-03-28T14:37:00.000-07:00

Paul's 10 month post proton treatment PSA, taken on 3/25/2008, was 0.8 ng/ml. This is down 33% from the September 2007 reading of 1.2.

We're very happy about this result but we know that we will always need to be vigilant about monitoring this situation.

Four Month PSA

2007-09-29T11:20:00.000-07:00

Paul had his first post proton treatment PSA blood test on 9/26.The reading was 1.2, which is less than half of what it was pre-treatment. His last proton treatment was on 5/31/07, so the 9/26 test was five days short of the four month mark.

The Loma Linda radiation oncologist had said to expect the four month PSA to be in the 1.5-2.0 range, given that Paul's highest pre-treatment PSA was 3.5. A little lower is certainly better!

The next test is in six months. That is Loma Linda's protocol -- first test at four months post treatment and then every six months thereafter, for the first five years.

. . . Life Goes On

2007-06-19T17:30:00.000-07:00

Some of you have asked about “next steps” in Paul’s prostate cancer treatment. There are no more treatment “next steps”, per se. The next scheduled milestone will be a PSA blood test at the four month post-treatment mark. This will be in late September. After that, PSA tests are done every six months for five years and annually after that.

Paul is doing well and has been tapering off Flomax. Again, the side effects have been minimal to date, for which we are grateful.

Life goes on.

Home Sweet Home

2007-05-31T18:46:00.000-07:00

Treatment 42 was completed uneventfully this morning. Thankfully, gantry 1 was up and running, at least through Paul's treatment (I did call them at 6 AM just to check). Everyone in the waiting room applauded as Paul entered after the treatment. If you know Paul at all, you know how he hates attention. He looked as if he wanted to crawl under a rock :-).

We arrived home this afternoon and are looking forward to sleeping in our own bed after two long months.

Again, thanks for all your support. It has meant more than I can say to both of us.

Home Stretch

2007-05-30T16:47:00.000-07:00

Paul has received 41 treatments, as of this morning, and has one more to go. His appointment tomorrow (Thursday May 31) is at 8:30AM. For those of you who are so inclined, please pray that gantry 1 is up and running at that time.

We plan on leaving as soon as possible after the treatment is completed. Of course, with the recent history of the equipment, who knows exactly when that will be ;-). If it gets to be too late in the day, we'll wait until Friday.

My next post will be written from home. Thanks to all of you for your blog comments, cards, email messages and overall support.

Carol

2 Remaining

2007-05-29T10:46:00.001-07:00

After a short delay ("minor problems" in gantry 1), treatment #40 was completed successfully this morning.

I don't want to jinx anything so I'll leave it at that :-).

Pins and Needles

2007-05-25T10:12:00.000-07:00

Since my last post, it's been another fun time at Loma Linda. The fun just doesn't end!

Wednesday's treatment was completed on schedule but Thursday's was quite another story. In brief, gantry 1 was down (again) all day. We hung around the hospital for a while but came back to the hotel in mid-afternoon, resigned to the fact that we were going to lose a second day. However, Mark, the second shift tech, who has come through for Paul before, called at 9:30 PM asking if Paul still wanted to come over for a treatment. What a guy! Paul's answer was "I can be there in 20 minutes". So, off we went! Treatment # 38 was completed by 10:30 PM. Another patient, whose last day was Thursday, was ahead of Paul. Treatment #39 was completed, on time, at 9:00 AM today.

That leaves us with three treatments to go. Monday is a holiday so there are no treatments. If we don't lose any more days, we will be out of here on Thursday May 31. If we lose one day, D(eparture) day will be Friday June 1. I don't want to think about it but if we lose more than one day, D day will be pushed back to the week of June 4.

Thanks to those of you who have been "putting in a good word" with the Man upstairs!

Six to Go

2007-05-22T12:34:00.000-07:00

This week has started off on a better note than last week did. Monday's treatment (#35) was rescheduled from 9 AM to 11 AM but was completed at that later time. Today's treatment (#36) was completed on schedule. I'm almost afraid to utter those words ;-).

Each day, while waiting for Paul, I see new patients arriving for their consultations and "podding". Loma Linda still has the name and reputation for proton treatment but additional new proton facilities are being built and planned in the US (There are currently only five such facilities in the country). Within the next few years, there will be more competition in the field of proton therapy. I'll leave the rest unsaid.

I'll post another update at the end of the week.

Approaching the Finish Line

2007-05-18T10:41:00.000-07:00

This week got off on a sour note. Gantry 1, the room to which Paul is assigned for treatment, was down all day Monday. We were told that it was down from Sunday evening until Tuesday AM. Treatment #31, originally scheduled for Monday at 9 AM, was finally received on Tuesday evening. This means that we are, at present, one day behind our target date for completion. The new "estimated" completion date is May 31. If any more sessions are missed, that date will slip by one day for each missed treatment.

This points out what we consider to be a problem in Loma Linda's delivery of proton treatment. If a gantry is down, they are unable to switch a patient to another gantry which is up and running. We've been told that there's a technical calibration issue involved. Loma Linda has been treating patients with proton radiation since 1991 so the equipment is old and goes down a bit too often. We were warned about this before we came but the frustration, when such an event occurs, is obviously high. They are supposed to tell patients, beforehand, that they can expect to miss, on average, four treatments during the entire treatment course. In our opinion, if they spent more time and money managing the equipment instead of managing patients' expectations, the level of patient satisfaction might be higher. Most patients just accept that they will experience missed days. We are not so forgiving ;-).

Anyway, after Monday, things got better. Gantry #1 finally came back up Tuesday morning but it was past Paul's scheduled time of 9 AM so he received treatment #31 on Tuesday evening instead. The rest of the week was relatively uneventful.

We are now in the single digits -- 34 down, 8 to go. For those of you who care to put in a "good word", please pray that there are no more outages so we can get out of here without having to spend the weekend of June 2-3 here.

Paul's Birthday

2007-05-11T15:03:00.000-07:00

Yesterday, May 10, was Paul's 65th birthday. We celebrated by having treatment #29 in the AM, followed by dinner out with the Thursday night group. One of Paul's fellow patients ordered dessert for him and everyone sang. Unfortunately, the restaurant was out of candles. Darn! Paul wanted to crawl under the table (As anyone who knows Paul knows, he hates attention). In addition, the Residence Inn staff left a balloon and birthday cake in our suite. The entire hotel staff (including the housekeeping staff) wished Paul a happy birthday when they saw him. One desk clerk even wished him a happy "day after birthday" today as she didn't work yesterday.

Today, treatment #30 was completed. That leaves 12 remaining treatments. It's getting down to the final leg of this journey. This week's treatments were all AM treatments except for today, which was at 1:45 PM. Not bad, all in all. We're very grateful that there are no significant side effects so far.

More next week.

Another Milestone

2007-05-09T14:04:00.000-07:00

Treatment #28 was completed today. That brings us to the 2/3 mark -- 14 more treatments to go. So far, so good insofar as side effects. Here is one interesting comment from one of Paul's fellow proton patients, when asked how he was feeling: "If I felt any better, it would be frightening".

We've settled into a fairly regular routine. Tuesday nights we attend the patient run "pot luck" at Loma Linda Springs, an apartment complex near the hospital. Thursday nights we generally join the "dining out" group and eat at a different restaurant each week. We usually don't attend the Wednesday night revival meeting / support group unless there is a speaker whose talk we want to hear. Last Wednesday night, one of the doctors gave a talk on advances in proton therapy, which was quite interesting. If we do attend any of these sessions in the future, we now know to arrive 1.5 hours after the meeting is scheduled to start, having eaten first. That's when the speaker generally begins.

That's it for now. More soon.

25th Treatment Completed ...

2007-05-04T16:14:00.000-07:00

... 17 to go. Still no significant side effects to report, for which we're very grateful.

This has been a relatively good week, no outages or cancellations, at least not for Paul. His appointment times this week were all in the morning; that's a good thing for us. Some men prefer evening appointments, claiming that they then have the entire day for other activities. Our theory is that if the equipment fails, a person with a morning appointment that gets cancelled can sometimes get squeezed in later in the day. It's happened to Paul twice.

According to the City of San Bernardino, we are now considered "permanent residents" (and therefore tax exempt insofar as the hotel bill goes), as we've been here more than 30 days. Hard to believe!

We've taken several days trips, two of which were to see two of our Las Vegas neighbors who are in California for various medical reasons. Today we went to Flabob airport in Riverside for lunch. It's not a big place but the trip was enjoyable. Sorry but there are no pictures to post as the camera batteries went dead en route.

More next week.

Major Milestone

2007-04-30T12:38:00.000-07:00

Today, Paul reached the halfway mark -- 21 out of 42 treatments. This means that the blue dot has been "officially" adhered to the badge.

Here is Paul (making one of his silly faces) proudly displaying the badge.

And here is a close-up of the badge, blue dot and all.

It Almost Didn't Happen Again!

2007-04-27T20:37:00.000-07:00

For those of you who have been following our story, please refer to my post of April 6 entitled "The Treatment that Almost Didn't Happen". Well, it almost didn't happen again!

I was getting ready to post a somewhat bitter tale of how Paul's 20th treatment was cancelled today. However, we got a call at 6:30 PM to come in for a 7:45 PM slot. His original treatment was scheduled for 9 AM this morning but we got a call at 6:45 AM cancelling it because the equipment was "down". I spent the rest of today grumbling. However, the second shift tech, Mark, saved the day by calling with an evening opening. They were still having some minor problems and the treatment took a little longer but it was completed successfully. BTW, one advantage of going in the evening is that the parking is much easier. Loma Linda has a real parking problem.

20 down, 22 to go!

Moving Along

2007-04-26T06:46:00.000-07:00

Wednesday night Paul had his 18th treatment. His appointments, for the past few weeks, have been AM appointments. On Wednesday, however, he was "bumped" to an 8:30 PM slot for some reason. We think it may have had to do with several anesthesia cases needing to be done in his treatment room in the morning. The treatment room is called a gantry. Paul is assigned to gantry #1 (there are four rooms), which happens to be the gantry in which children are treated. They use anesthesia when treating a young child in order to put the child to sleep for the duration of the treatment. It would be way too scary for the child if s/he was awake during the treatment. The anesthesiologists only work in the morning so whenever a child needs to be treated, the entire schedule gets moved around.

Not much else is new. Yesterday we visited the March Air Force museum which is adjacent to March Air Force Base in Riverside CA. Paul enjoyed it very much. Sorry, we forgot our camera so there are no pictures to post but we may go back. Next time we'll remember the camera.

15 Down, 27 to Go

2007-04-20T10:30:00.000-07:00

That's 35.7% but, again, who's counting? So far, there are minimal to no side effects -- nothing that a Flomax a day can't handle.

We've done some sightseeing. Here is a picture taken from the San Bernardino mountains.

The road up the mountain is a steep, winding road, similar to the Pacific Coast Highway, if anyone has experienced that road. We didn't make it all the way up as I chickened out just before the top and made Paul turn around.

Here is a picture of the Mission Inn Hotel in Riverside CA. It is an historic hotel dating back to the early 1900's, not far from San Bernardino. We took a drive the other day and had lunch there.

Finally, here is a picture of proton patients "recuperating" from their treatment. You may recognize two people in the picture, involved in one of their favorite activities -- eating.

The words of Albert Hammond's 1972 song "It Never Rains in Southern California" are certainly not true today! More next week.

Milestones

2007-04-16T12:01:00.000-07:00

Several milestones occurred today.

The first is that today is our 29th anniversary. We'll be holding off celebrating until next year on our 30th.

The second milestone is that Paul now has two dots on his guest badge. When the patient first arrives, he is issued a guest badge. There are stick-on dots denoting "classes", similar to what we went through in school. The first dot (green) denotes that the patient is undergoing treatments 1-11 and is a "freshman". After treatment 11, the second dot (yellow) is issued -- "sophmore" status. After treatment 22, the third dot (blue) is issued denoting the "junior" class and finally, after treatment 33, the long awaited red dot is issued to the "seniors". Graduation can't be far behind. Kind of corny -- yes?

You may be wondering why the dots are issued in multiples of 11 treatments. The reason is that the standard treatment course is 44 treatments. Paul will only be receiving 42 treatments. He has a specially designed treatment plan because of his artificial hip. He is currently attempting to do the complicated math to determine precisely when to stick on the remaining two dots :-).

So far, so good. More later this week.

Paul in His Pod

2007-04-12T11:15:00.000-07:00

The first shift techs were kind enough to humor me and take several pictures during today's treatment (#9).

Below is Paul in his "pod" (an open lower body cast into which the patient climbs for each treatment). It's called an immobilization device. Rob, one of the techs, is levelling Paul's hips in preparation for the treatment.

Here is another picture of Paul in his pod, after adjustments were made:

Following is a picture of the daily x-ray that is taken and overlaid on the planning CT scan that was taken in March when we were here for the consult. The round object on the right is his right artificial hip prosthesis.

One more shot of Paul in his pod. This is probably getting boring . . . just imagine how Paul feels!

Settling In

2007-04-10T10:56:00.000-07:00

Treatments 6 and 7 were completed successfully -- 35 to go, but who's counting? This week's appointments have been at 9:30 AM, so far, but tomorrow's appointment is scheduled for 10:00 PM. Paul will call in the afternoon, at shift change time, and try to get in earlier. We're learning that sometimes this works.

Last night we went to one of the patient sponsored "pot luck" dinners. There are two a week, on Monday and Tuesday nights. The first time one attends these events one needn't bring anything (so we didn't) but after that one is supposed to bring some kind of dish. We'll probably try the Tuesday night one tonight which is held at a different location. We signed up for a dining out event Thursday evening which hopefully won't be pre-empted by a nightime treatment appointment.

The fan on the power supply on my desktop computer died yesterday but, as you can see, it's back among the living. We took it to Best Buy and the Geek Squad replaced the power supply and checked out the rest of the hardware.

That's about it for now.

The Treatment that Almost Didn't Happen

2007-04-07T09:09:00.000-07:00

Friday's treatment almost didn't happen because of "computer problems" (Does this sound familiar?). We had heard that this happens so we weren't totally unprepared. The tech called at 3 PM and cancelled Paul's appointment scheduled for 9:00 PM. Bummer, we thought. So we went out to dinner. Then the tech called back at 7:30 asking if Paul could come for his treatment after all. Fortunately, we're about two miles from the hospital. They had to restart the system three times but finally everything worked. It's now 5 down, 37 to go.

Paul had his weekly appointment with his assigned Loma Linda physician on Thursday. This guy really likes to talk! He has everything down to the lowest level, I guess assuming that he has patients of all different levels of understanding. We got the feeling that he thought he was talking to grade schoolers but we smiled and asked appropriate questions.

There are several other LL patients staying here at the Residence Inn. One man is from Australia and has brought his entire family (This includes approximately 12 grandchildren) to stay here with him for the entire nine week treatment period. Unfortunately, several of their rooms are either right next to us or right down the hall. Imagine the noise! Thankfully we brought our white noise machine, which drowns out about 90% of it.

No treatments on weekends -- more next week.

3 Down, 39 to Go

2007-04-04T16:49:00.000-07:00

Treatments 2 and 3 were uneventful, thankfully.

The scheduling is a bit weird. Today's treatment was scheduled for 5:45 PM but they called at 3:20 and asked if Paul could come in early. No problem! We dashed over to the hospital. Tomorrow's treatment is scheduled for 9:30 PM but they said to call in the afternoon, when the second shift comes on, and check if they had an earlier opening.

Paul met a man named Ron who lives very near us (Lake Mead and Rampart for you Las Vegas residents). Ron had also used urologist #1 (the "blip on the radar") and didn't like him either so Paul gave him #3's name.

Tonight is the weekly support group meeting (Paul calls it the weekly "revival meeting") but we're not going. We only plan on going when they have a speaker discussing something in which we're interested.

That's it for now.

1 Down, 41 to Go

2007-04-02T11:15:00.000-07:00

We arrived here yesterday afternoon. If you can possibly avoid it, don't drive into southern California on a Sunday! Traffic was very bad.

Paul had his first proton treatment at 9:00 AM. The first treatment takes a little longer as several additional steps are done. It took about 45 minutes, from the time he left the waiting room to the time he returned. Tomorrow's appointment is at 6:30 PM. "Newbies" generally get evening appointments. We have put in a request for a morning appointment, on an ongoing basis. They said that they would try to accomodate us as the schedule permits.

Paul reports that he felt nothing during and after the treatment. The techs said he did "very well", as in he didn't fidget too much! He is currently out walking to Best Buy (about 1-2 blocks) to buy a line cord that we forgot to bring for my desktop computer. We borrowed the one from my power wheelchair to connect the computer.

That's about all there is to report for now.

How This Trip Began

2007-03-30T17:08:00.000-07:00

This story began in June 2006 when Paul decided to go to the VA for "cheaper" medications (This turned out to be not worth the effort). Long story short, the VA gave him a full set of blood tests. It turns out that his PSA (prostate specific antigen) had risen significantly from the previous reading in November 2005, so we went to see a urologist. Call him #2 (#1 was a "blip on the radar"). #2 did a biopsy last August which turned out to be negative. In January 2007 Paul had another PSA test. It had risen again. Although the PSA was still in the "normal" range, the rate of increase was too high. We have learned that this is a red flag in the world of prostate cancer.

Not wishing to give #2 another opportunity to miss anything that might be there, we took a 5+ hour (each way) trip to Ventura CA to see a well known radiologist who specializes in color doppler ultrasound targeted biopsies of the prostate. A targeted biopsy was taken and this time the results were positive. On February 20, 2007, Paul was diagnosed with prostate cancer. We think that we caught it at a relatively early stage but we're not sure.

Thus began a month of intense research into all the available treatment options. Uro #3 (#2 is now history) said Paul was not a candidate for surgery, at least by him (We weren't considering surgery anyway), but that he was a candidate for various types of radiation treatment. We considered seeds, both temporary and permanent, as well as external radiation guided by various methods. Over the past month, we've met with one medical oncologist who specializes in prostate cancer and three radiation oncologists. In addition, we met with uro #3 twice. It's been quite an education.

Which brings us to the present -- On April 1, we'll be heading to Loma Linda University Medical Center, in Loma Linda CA, for nine weeks of proton treatment.

http://www.llu.edu/proton/

Proton therapy is a form of radiation which has been reported to have fewer side effects and is acknowledged by the physicians with whom we spoke to be as effective as other forms of radiation in treating prostate cancer. Paul has spoken to a number of men who have been through this treatment for prostate cancer at Loma Linda and all, without exception, report good results (in some cases years down the road) with few side effects. We hope to be part of that group.