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ADT and SRT Journey Part 4

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Prostate Cancer
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Posted 9/7/2018 9:35 PM (GMT 0)
Mike, thanks, I’m sure it’s protocol, I just didn’t expect it. Hey, I’m in their hands, I’ll do whatever they say to minimize side effects
Posted 9/7/2018 9:52 PM (GMT 0)
Prato, that's interesting cause after a couple of weeks of radiation that was the last thing I would have needed!! In fact even now as soon as I eat I better not be more than 15 20 minutes from a bathroom, the sad thing is I'm still not losing weight mmmm I guess that's a good thing when you have cancer hey? Just looked in the mirror the other day still have my tattoo's.

Larry
Posted 9/7/2018 9:54 PM (GMT 0)
Yeah Larry, that’s what I thought. But like I said, I think I’ll just obey their commands. Lol
Posted 9/7/2018 9:59 PM (GMT 0)
Prat, I followed the treatment protocol to a T and that’s what I mostly credit for making it through SRT with hardly any near term side effects. It’s not easy to do but try your best to follow Sloan’s protocol and hopefully you’ll make it through just as well.

Larry, I tend to stare at my tattoos also lol

Mike
Posted 9/7/2018 9:59 PM (GMT 0)
oops I forgot a little humor adds to our thread, just don't give gary too much of a opening!! lol

Larry
Posted 9/7/2018 10:01 PM (GMT 0)
My doc put me on Fibercon, although he said metamucil would be OK too. Also had me take Culturelle. But he waited until I started having bowel problems. In my case, it was after only a week of treatments.

I'm now just shy of 4 weeks from the last radiation (No ADT for me though). At the last zap, they told me "Don't be surprised if you get worse before you get better." I was hoping this would not be the case, but unfortunately it was. Still, things have gotten steadily better the past couple weeks.
Posted 9/7/2018 10:04 PM (GMT 0)
No poop orders from my Guam RO, Ken. All he cared about was that my bladder was at least 80 percent as full as it was at simulation.
It’s like I went to a barber shop and you’re going to a hair boutique. Firmagon instead of leuprolide, Metamucil... I guess MSK has an image to keep up. rolleyes
Posted 9/7/2018 10:06 PM (GMT 0)
This is great to hear DJ. Good luck for continued improvement
Posted 9/8/2018 12:49 AM (GMT 0)
Thanks Pratoman. I tried going off the Fibercon but found I do better if I keep taking it. Maybe next month I'll try tapering off again.

It is nice to be able to work out again; fatigue problem is essentially gone. I also had this urge to do household things that I'd been putting off. Changed some light fixtures, replaced a ceiling fan.

As posted elsewhere, I found that middle of the day worked for me, as it helped me miss rush hour traffic. It was funny getting so thoroughly into that routine, drinking (water) and driving the same time every day.
Posted 9/8/2018 4:14 PM (GMT 0)

Skypilot56 said...
oops I forgot a little humor adds to our thread, just don't give gary too much of a opening!! lol
Larry

Not taking ourselves too seriously, and being able to laugh at ourselves is good medicine Larry. Given that 40 or so treatments haven't even started, my self control will be sorely tested. wink

During SRT, I took Senokot for a week. Had used it before surgery. Good stuff, but unnecessary for me during SRT. Almost four months later only minimal side effects.
Posted 9/8/2018 6:09 PM (GMT 0)
I’m expecting they’ll advise me low fiber too Mike. I do eat a lot of fiber, tons of Broccoli, and a fair amount of fruit. That won’t be easy for me. But I’ll have a good excuse to eat more garbage. 😂
Posted 9/8/2018 7:17 PM (GMT 0)
The nutritionist advised me to cut way back on fruits and vegetables. Curious, since I had to take Fibercon. But low fiber did help me. She also had me eat more rice, which I like, except that I wound up gaining few pounds.
Posted 9/8/2018 8:02 PM (GMT 0)

Pratoman said...
I’m expecting they’ll advise me low fiber too Mike. I do eat a lot of fiber, tons of Broccoli, and a fair amount of fruit. That won’t be easy for me. But I’ll have a good excuse to eat more garbage. 😂

Lol that was my thinking too-dr giving me permission to eat the foods I normally would skip! After the last radiation treatment they cleared me off the low residue diet but recommended to go easy to keep from blowing up like a balloon from all the gas.

Mike
Posted 9/9/2018 5:19 AM (GMT 0)
I'm gonna take a short break from HW. I'll report back after my 9/18 RO appointment. Hopefully all the static will have cleared by then. Have a good week, everyone.
Posted 9/12/2018 12:33 AM (GMT 0)
Hi guys
So I'm about 8 months out since finishing SRT with ADT.

Suddenly I find myself leaking... I was drip free
For months, now there's a little squirt on any little excursion...

Is this a bad sign? .. thoughts? Anyone else going through this?

Zzarth
Posted 9/12/2018 1:14 AM (GMT 0)
Hi Zzarth I'm in the same boat as you has gotten worse the last month been wearing a lite pad almost every day now. Radiation just keeps on giving!! Picked up a friend and his wife that I became good friends with after being at hope lodge and took them down to the mayo today. He's 5 yrs after surgery and chemo and proton beam radiation and now is 100% incontinent and psa is on the rise so makes me realize that wearing a lite pad isn't too bad.

Larry
Posted 9/12/2018 1:40 AM (GMT 0)
Mine got worse during RT pretty much in the third week. I was fairly close to being dry. Now I am using about 6 pads on bad days and 3 to 4 on good days. Hoping it will get better or doc's can come up with something to fix it. We will see. I am at 8 months post RT.
Posted 9/12/2018 2:17 AM (GMT 0)
I know I’ve said this before, but I’m really confused, even a bit upset. I came out of surgery with full continence other than a minor stress dribble, here and there. Now I’m headed for RT, doing simulation tomorrow, at MSKCC, with RO telling me 1% chance of long term side effects.

So when I read this stuff, I just don’t get it. Makes me wonder if I’m doing the right thing.
Posted 9/12/2018 2:28 AM (GMT 0)
Prato.... since we are both ex Tewari patients... not a good sign for his practice...

It sucks... radiation and ADT made me 100 ED... and nowmleaking.. and I'm still tired and 30.lbs heavier

Sigh

Oh well

Zzarth
Posted 9/12/2018 2:52 AM (GMT 0)
I started wearing a small pad during the last few weeks of treatment. about a week after the last treatment, I decided I was better off with larger pads, for both pee and a bit of poop. Wasn't bad really, only had to go home and change once, but it was worse than before. Now, three weeks later, I've been doing better. So I had the nerve to try going padless today, and did OK. Keeping fingers and legs crossed.

Also started gaining weight after treatment ended, but only a few pounds. I think that has leveled off also.

Too early to know the effect on my PSA level.
Posted 9/12/2018 2:54 AM (GMT 0)
Pratoman, good luck with your simulation tomorrow. I hope all goes well for your course of treatment.
Posted 9/12/2018 3:22 AM (GMT 0)
Dj Bear, thank you. As it gets closer I seem to wonder more and more if I’m doing the right thing. But I’m moving forward. Just hope for no,permanent effect on my QOL. Got to trust the RO.
Posted 9/12/2018 3:26 AM (GMT 0)

Zzarth said...
Prato.... since we are both ex Tewari patients... not a good sign for his practice...

It sucks... radiation and ADT made me 100 ED... and nowmleaking.. and I'm still tired and 30.lbs heavier

Sigh

Oh well

Zzarth

Yeah, Zzarth, not good at all. Sorry for your outcome so far. Hope things improve. Please stick around and keep us posted.
Btw I know of at least one other g7(3+4) Tewari graduate who ended up having SRT and ADT. He had, I think, EPE though.
Posted 9/12/2018 3:28 AM (GMT 0)
Prat - having ad RT as my primary treatment, I have to say that it was a full year before I was able to stop second guessing my choice. RT is the slow, invisible road and often I asked myself, "Is this working?"

took a few years for my brain to believe that it had.

Andrew
Posted 9/12/2018 5:11 AM (GMT 0)
Hello all,
I first posted in Late July and received a lot of support for me and my husband and a lot of suggestions and information. He got through the surgery and catheter pretty well and is going through 2 depends daily. He is on his feet most of the day at work and is feeling some improvement with continence. We met with my husband's urologist, Dr. Jones, last week at The Urology Center of Colorado for the next step in his treatment--ADP and SRT. He is going to be doing something called urostim for continence to get as close to dry as possible before radiation.

His pathology was as follows:
prostate carcinoma stage IVA PT2N1MXR1
Gleason 4+5, 40%, TERT 3, +Marg L and R Apex, 1 of 9 + nodes (anterior prostate fat)

I thought I would post on this thread since it's where he is headed for his treatment. This Thursday he gets Firmagon and meets with the RO, Dr. Gross. Next week we are meeting with a PA to talk about what to expect from the ADT and some nutrition and exercise info, I think. His PSA last week was .05 or .5--the doc called and left him a message and he didn't remember which number it was. I know that's a big difference and will have to listen to the message.... My guy seems scared but isn't really saying much.

I'm not sure enjoyed is quite right but I did find some comfort and a few giggles in this thread! I appreciate the senses of humor and honesty here and the story about the plane was just wild. I'm glad you weren't hurt badly...

So, thanks again for your suggestions in July. The bucket for the catheter was incredibly helpful! I hope I can get my husband to sign on but think he is still feeling more overwhelmed than he is willing to admit and he just needs to listen to a lot of jazz and indy rock to feel like himself for nowsmile
Thanks again,
Charlene (Kittytalk)



********************************************
Diagnosis of pnbx 5-15-18: Vol. 49.4cc: PSA 18.1
Diagnosis of Preoperative examination
Diagnosis of Prostate carcinoma - cT2aN0M0 Gleason 5+4 PSA 18.1, NCCN very high risk 5/15/18
Diagnosis of Prostate nodule
Diagnosis of PSA, elevated
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