Update on my SBRT Journey

I really appreciate all the helpful information I've got from this board and thought I'd share of some of my experiences as I am just past mid-way through my SBRT Tx.
I decided to take the plunge and go with Dr King at UCLA for my SBRT Tx's, I can't say enough of how he has patiently been answering my questions that have come up prior to and during the Tx. It's been difficult having to travel from Hawaii to LA for the Tx, and having to adjust to different living arrangements and working out all the details such as transportation, meals, etc...not to mention all the additional costs involved. But have not experienced any serious side effects so far.
I just got the 3rd of 5 SBRT Tx's today and some of the SE experienced include more frequent urination, gas/bloating and some softer stool at times. These SE's, as explained to me by Dr King are normal and are due to swelling of the prostate from the radiation exposure--he likened it getting a bad sunburn. Further, these SE's should subside as the swelling goes down. Thankfully though no blood in urine or rectal bleeding. Granted I was a little worried because my Tx schedule is a little out of the ordinary in that I have been receiving Tx on consecutive days, except for the weekend break. I also went right into the Tx only 2 days after the fiducial implants and CT simulation--this was done to help reduce travel expenses. I think I experienced more discomfort from the implant process than the actual Tx and the one thing I might do differently, if I had to do it over again would be to have more time for recovery after the implants. I had some swelling from the perineal entry points for the fiducials and the experience itself was more painful than my biopsy. Although, not as much SE, since, I guess the "needles" were inserted around the prostate rather than in it with biopsy.
The other SE I have been experiencing, not sure if this is due to the Tx, is that I have felt more lethargy/tired--but this could be due to the unfamiliar environment and jet lag. I don't really have a busy schedule though, so can devote more time for resting. The Tx sessions are very short about 30 min...think i spend at least that much time traveling to/from the appt's in the LA traffic.

PAX said...
....The other SE I have been experiencing, not sure if this is due to the Tx, is that I have felt more lethargy/tired--...

about 10 or 12 sessions in, I would get really, really tired and had to nap for an hour or two. Even a month or two later post-treatment I would still get really tired at times.

Thanks for the feedback from Paxton, Terry and John. I was kinda wondering about the fatigue...if there are any more out there that have experienced this, would be interested in your experiences. I was also interested in how long these SE's lasted and/or when I can expect them to diminish.

Frosty,
I'll try to provide as much info as I can, but you can also email me for any additional info...I thought I would post the following info in case others on this board might benefit from it:

1. The schedule they worked out for me was to have the fiducial implants/simulation done on a Mon. Then two days to give them time to plan out the procedure. Tx starts on a Thurs, then Fri, take a break for the weekend then Mon, Tue Wed. So a total of about 9-10 days. I arrived in LA on Sun since my first appointment was at 7:30 am on Mon and I also added on another day at the end just in case anything went wrong (which almost did when I got a call fr UCLA saying the machine broke down-luckily they fixed it in time for my appt that day)

2. TA had suggested I do the fiducial implants/CT simulation in Hawaii prior to going to decrease the amt of time I needed to spend in LA. But upon checking wth Dr King, he recommended I do both procedures with UCLA Medical which seemed reasonable to me since they could probably do it according to the specifications of Dr King. I also sent my test results to Dr King prior to going over including my biopsy results, MRI scans, and PSA test results for the last year. The other hurdle I had to deal with was getting pre-approval from my health insurance as SBRT was not an approved Tx for P-ca in their formulary.

3. I was trying to obtain assistance with lodging from ACS, but they were not able to find anything for the days I was going to be in LA. The UCLA Medical SW provided me with some suggested lodging options and although I preferred to stay at Tiverton House, they were not able to accomodate me for the whole time I was in LA, so had to split my time between Tiverton house and Hilgard House--both offer discounts for UCLA Medical patients.
I did not rent a vehicle because I was lucky enough to get in touch with a friend of a friend who was willing to handle most of my transport needs. I also contacted ACS (they helped on (1) 1-way trip, but for the most part couldn't find a vol driver. For the days which my friend cannot provide transportation, I plan to use Uber/Lyft.

4. This was a concern of mine, but when I posed this to Dr King, he noted that there should be no issue/concerns with regard to the consecutive days or the time window after fiducial placement

5. I didn't realize the high cost of hotels in the Westwood area and the cost of food in the area restaurants. I chose to stay in the area because of the numerous appts and the notorious traffic problems in the LA area. Other inconveniences might include the different weather conditions, the fatigue I experienced while receiving Tx's, the traffic, lack of svces at the lodging venues and having to change hotels.

6. No, UCLA does not require someone to be with you--I went alone. The only thing I was concerned about was if something unusual happened with regard to SE's. But, "knock-wood" so far I have not experienced anything unusual or severe. Having someone though might be helpful to have another set of "ears" at the appt's and provide any assistance you might need such as driving, getting food, or helping work out logistics.

Hope this helps.

Thanks so much for the info. I called Dr Kings office and sent my records over to them. They asked when I want to fly in for my tx. I asked, well when will you have availability? He responded with, "we will make availability when you need it. We always have availability". How refreshing that is to hear. Meanwhile way up here I was told by a top rated facility that "as a new self referral, the earliest sbrt consult was over a month away. So I took it and later tried contacting that facility on two occasions with a question concerning my "consult" and never even got a response.

Just wanted to throw something out to possibly get some feedback from the members here. I have completed 4 of the 5 SBRT Tx's at UCLA and last night tried out the "equipment"...glad to find that I can still get some "wood" but noticed that there was some blood, dk brown coloration of the semen. Has anyone else had this type of experience during or soon after radiation/SBRT treatments?
Thanks.

Fiducials cause some bleeding.

PAX - It might just be the early onset of one of the common after-effects of SBRT -- loss of ejaculate. In my case, that was nearly complete within a couple of weeks post-treatment, and is expected to remain so for the long haul.