w0hll
New Member
Posts: 6 
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Post by w0hll on Jun 18, 2014 6:04:23 GMT -8
Name is Carl. Dx Dec. of 2013 Gl 8 after PSA doubled in a year. Spent the rest of the winter and spring trying to find best treatment and docs. Started in Omaha, saw two urologists there, then a radiation onc. Went to Mayo in Rochester. Their diagnosis was different from Omaha's. So how do you decide which is best. Met with a urology Med Onc in Omaha who said either surgery or radiation would have equals chances of success. Am staying with the the med onc for the HT and doing 40 treatments of RT beginning June 23. So treatment is RT with 28 mo of HT. Started on Casodex for two weeks then 3 mo Eligard shots for the rest of the 28 mo. Stopping Casodex after RT is finished. PSA has dropped form 10.8 to 0.6 in two months. Rad Onc wanted it undetectable when treatments start.
Age 67, Dx 12/19/13
GS 4+4=8
PSA 10/12 3.8; 4/12 5.1; 10/136 6.3
8 of 14 cores positive
CT, Bone scan and MRI all neg
Stage T3a
Left Apex 1/2 positive 4+4=8 10%
Right Apex 1/3 positive 4+4=8 20%
Left Mid 2/2 positive 3+4=7 10%
Right Mid 2/2 positive 4+4=8 40%
Left Base 0 positive
Right Base 2/3 positive 4+3=7 35%
Rochester said it was confined and was T2a
So decided to error on the side of caution because the Rad Onc thinks it has extensions from his view of the MRI.
Live in Southwest Iowa and am semi-retired teacher. Still do the IT part time at our small school.
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Post by KC on Jun 18, 2014 6:48:57 GMT -8
Carl, welcome...and thanks for stepping forward to introduce yourself since registering here at the site in April.
RT starts for you next Monday (June 23). Hopefully your radiation oncologist has been sharing "best practices" with you to help make the experience more tolerable.
One of the important big-picture perspective to keep in mind about RT is that you want to do what you can do to keep your lower abdomen "insides" consistent and in the same place throughout the course of the 40 treatments...otherwise the radiation may cause more problems in other areas. Generally the advice is to ensure that your rectum is as empty as possible and moves as little as possible during the treatment session. Dietary and lifestyle choices can help to maintain "regularity" and reduce irritation/gas. For example:
* three regular meanls per day
* drink 2 liters of water
* chew your food completely or chop it finely
* exercise regularly
* avoid foods that cause flatulence or irritation
Fatigue is a frequent side effect of RT, and it often shows up in the 2nd half of treatment. I would strongly encourage you to exercise regularly (not vigorously) from the beginning of treatment to help minimize fatigue.
Good luck, and keep us informed! Thanks for joining.
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Post by Allen on Jun 20, 2014 9:43:57 GMT -8
Carl,
Good luck with your RT!
You asked how to decide between 2 biopsy reports. Most pathology labs at hospitals have to be able to read many different kinds of biopsies. There are only a few labs that specialize in reading prostate biopsy slides. Bostwick Labs and Epstein's lab at Johns Hopkins come to mind. The ability to read them comes with a LOT of experience. Their findings are usually held to be definitive.
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Post by KC on Jun 23, 2014 5:38:31 GMT -8
Good luck to you, Carl, on your radiation therapy which begins today.
Let us know how you are feeling, and how your experience is going.
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w0hll
New Member
Posts: 6
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Post by w0hll on Jun 28, 2014 18:26:03 GMT -8
Been through a week of treatment and things seem to be going really well. The techs are great and get me in and out in 30 min. No se so far, but doc said they may start in the next week or so. 5 down 35 to go. The drive is 1.25 hrs. each way. Endurance contest!!!
best to everyone.
Carl
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Post by Tony Crispino on Jun 29, 2014 8:19:43 GMT -8
Hi Carl,
I made it a point to walk after each fraction. I would be on the table at 7:15am out the door and back home by 8:00am, walk two-three miles, shower be at my home office desk by 9:00. I never missed a day of work. But after I was done, I felt pretty good but I was also on HT at the time and fatigue was a factor. Two weeks after stopping my radiation I noticed a surge in energy but fatigue was always a factor while on HT. In fact it took me three years after stopping HT to start testosterone replacement therapy to finally lose the fatigue.
I've been on TRT for 4 months now. But as an 8 years vet of this disease, I feel pretty good these days. It helps having a zero PSA.
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w0hll
New Member
Posts: 6
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Post by w0hll on Jun 29, 2014 15:56:32 GMT -8
Thanks Tony,
I walk downtown for breakfast ( about a mile+ roundtrip). Do the chores at home and then head for Omaha about 11. Treatment is at 12:30. Takes 30 minutes. The drive is about
hour and 20 minutes. I am doing good and feel good. Small hot flashes are only se so far. ADT since the middle of April. RO is pretty confident he will get it.
Later
Carl
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Post by Tony Crispino on Jun 29, 2014 22:30:07 GMT -8
You're doing right. Keep up that physical activity. It helps to not let it lag. Keep us update!
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w0hll
New Member
Posts: 6
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Post by w0hll on Jul 25, 2014 6:10:42 GMT -8
Today is treatment number 23. So far so good with no bad side effects. Hope it continues. only 17 left. Hooray.
Carl
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Post by KC on Jul 25, 2014 6:27:00 GMT -8
Carl, thanks for dropping in to let us know how you are doing. And it's not just "Hooray"....but HOORAY!!!
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Post by lupronjim on Aug 1, 2014 11:26:45 GMT -8
Hi Carl, feel like I know you since we had such a long chat the night we were the only two on Healing Well Wed night chat session and found we have mutual friends/relatives in NW corner of Iowa (beats the hell out of coroner).
Glad you are doing so well and appreciate the updates as I should be beginning radiation soon, probably later this month.
LupronJim
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w0hll
New Member
Posts: 6
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Post by w0hll on Aug 22, 2014 6:05:41 GMT -8
Just finished the 40 fractions yesterday. RO said 80 Gys to prostate and about 85 painted to the tumor a area. Now I guess it is just wait and see. RO thinks good success. I have had little or no SEs and am grateful for that. Will be on Eligard for 21 more months.
I am very happy the endurance contest is over. A lot of windshield time. Thanks to all for the great encouragement.
Carl
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w0hll
New Member
Posts: 6
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Post by w0hll on Sept 30, 2014 10:59:51 GMT -8
Went for my 6 wk check to the RO and MO. PSA was < .05. They were happy, but not nearly as happy as I was. I am now planning to stay in the ZERO club..
Carl
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Post by KC on Sept 30, 2014 12:48:52 GMT -8
Super cool, Carl! Thanks for the check-in/update!
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