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My SBRT journey begins today.

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Posted 9/5/2013 5:27 PM (GMT 0)
We look forward to your next update!

Jack
Posted 9/5/2013 6:13 PM (GMT 0)
It's interesting to see the differences in SBRT protocols.

I took daily ibuprofen rather than steroids. One guy I talked to was prescribed a Medrol dose pak, another guy took Celebrex. Who knows which is best? But I like the idea of preventing inflammation rather than treating it later.

I didn't have a rectal balloon, but that's probably because my treatments were a lot shorter. Isn't it nice to do this all in 5 treatments rather than the 40 treatments that guys usually go through? I hope the rest go well with you and the SEs are minor.

I'm helping a friend fight his insurance company to get SBRT paid for. He's thinking of retiring early so he can get covered by Medicare instead, which will pay for it.
Posted 9/5/2013 6:17 PM (GMT 0)
Tall Allen,

Why would there be a problem with insurance covering it? Did you have any issues getting yours covered at UCLA?
Posted 9/5/2013 6:29 PM (GMT 0)
My friend's parent company is in Chicago and his insurance company - Illinois Blue Cross/Blue Shield - initially said they won't cover it. He is submitting an appeal. I gave him info to put in the package -- the latest results, the ASTRO endorsement, the cost comparison, the PCa SBRT registry site, and the clinical trial registry at UCLA. I'm hopeful that they'll find that convincing.

I had no trouble getting approval from Anthem Blue Cross of CA because it was part of a registered clinical trial and the cost was much less than IMRT.
Posted 9/5/2013 6:55 PM (GMT 0)
I am thinking of getting SBRT done at UCLA but would have to change insurance in November through my wife who works at UCLA. They are discontinuing Anthem Blue Cross and replacing it with a new UC Care which accesses UC doctors. Do you think I will have a problem?
Posted 9/5/2013 7:56 PM (GMT 0)
My friend said his insurance company covers Dr. King and covers UCLA but didn't cover Dr. King using SBRT at UCLA. Go figure! I often find their reasoning inscrutable. I'd suggest you call both insurance companies and ask.
Posted 9/6/2013 11:16 AM (GMT 0)
Treatment number 2 in the books. No change from day 1, same routine. I do Monday, Wednesday and Friday next week and I'm done. I have a bad cold, so I don't know if the radiation is making me tired or the cold, but I believe it to be the cold. No issues so far. thanks for all the well wishes guys.

As far as insurance, I have United Health Care and they approved my SBRT in like 10 days with no issues. I hope the other companies come around.

Mike
Posted 9/6/2013 2:27 PM (GMT 0)
Get er done, Mike.

We'll be praying for you.

I had to re-check my typing to make sure it did not say "paying":}

LupronJim

Posted 9/6/2013 3:10 PM (GMT 0)
Two down, three to go! Get er done Mike, and hope that cold goes away soon.

And, thanks again for continuing to share your journey so as to provide invaluable information for the newbies who may be considering your path. . . .
Posted 9/10/2013 10:37 AM (GMT 0)
Treatment 3 done on Monday, just two more to go! It's still about one hour on the table, but now that I brought in my own music to listen to it goes quicker! From check in to leaving is about 1.25 hrs.
I do have some fatigue, but after talking to my RO, I don't think it's anything to be concerned over. I've been fighting allergies and a head cold on top of being new to Flomax and taking a steriod prior to the treatments. They told me the steroid my have an averse effect on my sleep and they were right, as I wake up (not to pee, just wake up) a few times a night. They also have me taking milk of magnesia along with a low fiber diet, so that keeps me awake as well. Seem to go through a lot of toilet paper these days!
I can't complain though, this is over on Friday. No more steroid, no more milk of magnesia, and back to a healthier high fiber diet. I'll get back to exercising more as well. Just don't have a lot of energy right now, and it's been in the high 90's here in St. Louis, so I'm not really into taking long walks just yet. I don't need naps or anything, just don't have much extra left at the end of the day.
I have been able to work through this whole thing, so that's good. My boss has been great through this journey, and although I've missed a little time, I haven't missed a whole day or worked less than 7.5 hours (I'm one of those idiots on salary and work 10 hrs most days), so that's been great.
Two more treatments, and I'll be on the other side, ready to tackle the "new normal". Two more rectal balloons and I'm done with that too, thanks goodness. I'll never look at a balloon the same way again!
Mike
Posted 9/10/2013 11:20 AM (GMT 0)

MikeM53 said...
I have been able to work through this whole thing, so that's good. My boss has been great through this journey, and although I've missed a little time, I haven't missed a whole day or worked less than 7.5 hours (I'm one of those idiots on salary and work 10 hrs most days), so that's been great.

Mike, here's another salary nut like you. I work at least 10+ every day too, and consider that part of the price of being in management. This SBRT procedure would be just great, getting things done in so few treatments. My plan took 44 sessions, every one involving almost two hours of travel, 100 miles a day, though the treatments only took a few minutes. My work days became quite long, even though I spanned my lunch hour with the sessions. I only missed a couple of afternoons due to issues with the x-ray machine and/or its schedule.

I think keeping up the work schedule helped me keep my Positive Mental Attitude (PMA). My MO's assistant was surprised and greatly enthused that I was keeping up my work schedule. It never occurred to me to do otherwise, honestly.

Good luck, and thanks for the regular updates!
Posted 9/10/2013 11:46 AM (GMT 0)
Mike, I read you live in STL. I was born and raised there. Some would say grew up there, but I never grew up.

Have been on east coast since 1971 though after I graduated from M.I.T. - Missouri In Town.

Your 90 degrees is a little hotter than most area's 90 since your humidity stays about the same as your temperature.

3 down and 2 to go. So more than half way done.

Hang in there, and leave some toilet paper for the rest of us.

LupronJim
Posted 9/10/2013 12:40 PM (GMT 0)
Hi Mike, thanks for keeping us updated and now the finish line is in sight! I'll too chime in about doing the management gig, my day is usually 10-11 hours bracketed by a 40-minute drive on each end - which is "normal" for me in my career - so I guess what does that say about 'normal!'

Continued best Mike, and thanks again for the great job of detailing your journey for the benefit of others.
Posted 9/10/2013 1:19 PM (GMT 0)
I figured there were more than a few of us juggling 50+ hour weeks! What's wrong with us? LOL SBRT is certainly worth looking into from a time standpoint, that's for sure! Redwing, I believe you're right about working helping me with my state of mind as I go down this road. I'm thankful for all I have and all the time I have to not think about PCa. Thanks for all the well wishes guys!

Lupron Jim, I lived in Boston for 5 years and then Maine for 15 years prior to moving to STL about 3.5 years ago. I grew up (age wise) just south of Syracuse, NY, so I'm an East Coaster at heart. You are right about the humidity out here...brutal! All and all it's been an easy summer compared to the first few I was here though. I can't say enough about the great folks out here in the midwest, and although I hope to retire back east, I'm really enjoying your "hometown".

Yooper, Plant management, what the heck were we thinking? LOL

Mike
Posted 9/10/2013 1:59 PM (GMT 0)
Mike, I'm reading your updates with great interest. SBRT was really new when I was diagnosed but the science behind it really looked sound. I think you made an excellent choice and appreciate you continuing the updates for us and for the benefit of new members.

Once you are down the line a bit, you might want to consider putting your "journey" together into one post and then including that in your signature. That was suggested to me early on and I know that some new members have told me that was helpful so that they could see the whole process in an organized manner.

In any case, I just wanted to weigh in and thank you for the update.

Jim
Posted 9/10/2013 2:36 PM (GMT 0)
Mike, you are doing great. So glad the finish line is right in front of you, and that you are having very little in the way of side effects or discomfort.

On the balloon part, you realize they are not intended to be in some dark hidden orifice like that, lol.

Not sure I would be eager to want party balloons after this.

Good luck as you approach the end, your reporting has been great, and as Jim suggested, would make a good combined journey for others to read.

David
Posted 9/10/2013 4:12 PM (GMT 0)
Will do guys, adding the info to my sig, is a great idea.
Posted 9/12/2013 9:45 AM (GMT 0)
Day four in the books. One more treatment on Friday and then I go back for follow up on Halloween, first post treatment PSA test a couple of days before that. No real complaints. Just a little tired and not sleeping as well as I'd like, but i don't believe that is all because of the radiation. Diet change, work stress, allergies, etc are contrbuting to this as well. One more day Friday and I'll catch up on my sleep over the weekend. The 'new normal" begins on Saturday and i feel good about it!

Mike
Posted 9/14/2013 12:02 PM (GMT 0)
Well, yesterday was it.  The last of my five SBRT treatments.  It went by quickly, and with minimum annoyances.  I slept better last night than I have in two weeks.  I had a long talk with an old friend and mentioned my lack of sleep.  I told him about the steroid, the change in diet, the milk of magnesia, trips to the bathroom, etc.  He finally said, "you're dealing with cancer, there's probably all kinds of stuff going through your head that never really comes to the surface.  I've never heard you say you were worried, or anxious about this.  It's classic, bottling things up, Mike".  He must have been right, because now that the treatments are over I seemed to sleep just great! In retrospect the treatments have been amazingly easy.

Anyway, PSA test on 10/29 and follow up with RO to look at the results on 10/31.  Yeah I know, last treatment on Friday the 13th and follow up on Halloween! I have tickets to the Cardinal's game tonight at Busch.  Looking forward to a beer and a brat and a brief reprieve from thinking about PCa.

I will be linking this part of my journey to my sig line and will update as I go down the road. For now, I'm here to help and support the rest of you, my brothers!

Mike

Posted 9/14/2013 12:40 PM (GMT 0)
Congratulations on finishing, Mike! Having the radiation treatments in the rear view mirror is a good thing.

Enjoy the game! Life goes on.

People ask me what's next, and I say, "Life!".
Posted 9/14/2013 12:42 PM (GMT 0)
Mike, sounds great! Glad you're done and hope you enjoyed the game. I'm also happy that you will be putting this all together for future newbies. SBRT is an important option and your story will help others get a good view of it.

Jim
Posted 9/14/2013 3:54 PM (GMT 0)
Hi Mike, and congratulations for making it to the other side!  Glad to hear everything went so smoothly, so heck yeah get out there and enjoy the game along with a brat and a few cold ones!

And - again I'll say "THANKS" for charting your journey towards helping the newbies that will unfortunately be following us.  Your level of details will be infinitely valuable to those that may consider SBRT as a choice of treatment.  "Pay Forward" hell yeah!

Continued best to you!

Posted 9/14/2013 4:44 PM (GMT 0)
Mike, my SBRT brother,

What you wrote brought back memories. One of the strange things about SBRT for me was how much of a nothing the treatments were. I only had to travel 10 minutes to get there, had no special diet or bowel prep to do, didn't even have to get out of my street clothes, and each treatment was only 5 minutes, done in a little over a week with no fatigue or impact on my daily life -- it's a strange thing to relate, but I didn't feel like I went through anything. My friends were ready to dole out support and sympathy, and were suspicious that I was keeping something from them. "Are you sure that's it?" they all asked. For me, dealing with the pre-treatment anxiety and overcoming the mental baggage I had about cancer from my parents' deaths were the hard parts.

Congratulations on having that behind you.
Posted 9/23/2013 3:52 PM (GMT 0)
I thought i'd throw in a quick update as I'm now 10 days after my last treatment.

Sleep: Sleeping much better now. Most of the fatigue is gone and I started excersising again this past weekend. The layoff is noticable, and I have a ways to go before I get back where I was strengthwise and endurence wise, but it shouldn't take too long. I feel good.

Urinary: No problems to report

Rectal: Still have some diarreaha, but not bad. Lots of gas for some reason. RO said switching back to a high fiber diet might mess with my bowels for a bit and I guess this is it. I still don't truat a fart, but it's getting better everyday.

Sex: No problems at all!

Overall I feel pretty good, nothing much to report. I know radiation sometimes takes time to manifest any SE's, but after 10 days all is well. The rectal problems aren't anything worse than things I've had in past and those were usually caused by too much beer and too many wings. This has all gone tremendously well so far.

Mike
Posted 9/23/2013 11:09 PM (GMT 0)
Mike,
I've been hanging on every word... you're an inspiration! Thanks. Jim R
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