Wednesday, April 29, 2009

One year and One Reunion

Again it has been a while since I last updated this blog. This week, the first week in May 2009, marks the one-year anniversary of the completion of my proton treatment at Loma Linda.

First an update to my Medical status:
As a refresh I had a high PSA reading of 6.3 and a Gleason of 7 (3+4). The first mark was last August with a post treatment PSA of 1.2 followed by a slightly discouraging 1.3 in January and finally at the end of March 2009 a PSA of 1.1. By all standards I’m quite happy with the results.

If you read the blog you know the only side effect I reported was hesitancy in urination, which Flomax took care of. Last thanksgiving I decided I would try and see what would happen if I stopped. I had been weaning myself off of Flomax by taking pill every three or four days. Usually by the fourth day particularly in the evening and at night if I had to go to the bathroom it would just dribble out.

I must also admit I had a secondary motivation. My lower back ached and thanksgiving was particularly tough. If you are a prostate patient lower back pain is not a good sign. It can indicate the cancer has progressed to the bones of the spine or the pelvic. That was in the back of my mind. However I also knew one of the possible side effects of Flomax was lower back pain. In addition the lower back pain became worse after I played tennis. I had taken up tennis when I was in treatment last April. Truth be know I have a tendency to over do it. At 59 learning a newish sport is not as easy as the last time I played tennis in my teens.

So I stopped taking Flomax. As it turns out it was the right time. Within a day of when I would normally take Flomax the back pain disappeared. My tennis slowly improved and I urinate like I did in my forties. I get up in the middle of the night maybe a couple of times a week unlike the three or four times a night before treatment. Oddly the night stream of urine is weaker than the day stream. I have no good answers for that nor it seems do the doctors. It is however quite common.

Last week was the first reunion of the prostate cancer patients I became friends with while undergoing treatment. The reunion was held in Redlands, the town next to Loma Linda. We had a great deal of fun playing golf, tennis (in my case) drinking to much and telling stories. It was really wonderful to reconnect.

As a group we were fortunate to have Rhonda to instigate and organize the reunion. She is married to Jim who shared the same Gantry 1 for morning treatments. Unfortunately Rhonda found a lump on her thyroid and decided the prudent thing was to go through tests rather than come to Loma Linda and enjoy her hard work. Rhonda as it turns out is doing just fine. The cysts are benign. Interestingly these reunions are fairly common but it is rare to have such a large one. Most are smaller in numbers. We had over thirty people.

The reason to bring this up is in the people who came we saw a range of decrease in PSA. All had decreased to the satisfaction of the doctors. The best was a decrease from 18 to 0.3x. Remember a slow decline is what is expected with any radiation treatment. Within a year or two hopefully the nadir is below 1.0 and an ideal nadir of less than 0.5.

I’ve had a number of people request recommendations, more info, or have questions. If you would like to contact me leave a comment. But PLEASE LEAVE ME YOUR EMAIL ADDRESS. I never mind trying to help. I will always remove all email addresses before allowing the post to be published.

4 comments:

Dennis Pyritz, RN said...

Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blog Links” with over 600 other cancer blogs at www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources and more. Please stop by and visit. If you like the site, please consider adding Being Cancer to your blogroll.
Take care, Dennis

Joy Heather said...

My husband is undergoing treatment for Prostrate Cancer at the moment..he has recently been sent to a Urologist as he has a blockage on one of his kidneys as well...i would just like to know how you are now (Dec 1st 2009) as it gives us both a lot of hope when we read of folk who are recovering and well, I live in the U.K. and our Health Service is no where near as good as that of the U.S., but we are praying for a good outcome.

Anonymous said...

Peter,
Hope you're well. I'd like to thank you for sharing your journey and all the initial work you did that led to your treatment at Loma Linda. I've just been diagnosed with prostate cancer (Gleason of 3 + 3, with a PSA of 7, and a T1C cancer stage). A biopsy showed one of 12 tissue samples as cancerous.

My question to you: Is there any difference in the technology and equipment between Loma Linda and MD Anderson? I would have assumed that because the Anderson Center came on stream 16 years after Loma Linda that it would be second-generation technology. Anderson now refers to something called Pencil Beam Proton Therapy. I wonder if it's even more precise than regular Proton Therapy.

What's your take on this? I live in Northern California but would be willing to travel to Houston if the technology is better there. I'm not as focused on the experience and protocols you mention because Anderson has now done more than 2,000 of these procedures. But I would greatly appreciate your view.

Best,
John

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