ADT and SRT Journey Part 4

That’s good to,hear Progressing.

Sim went well, I posted on another thread about it. Starting SRT sept 24th.
I started taking Metamucil four days before the swim, and they told me to continue taking it every day till I’m done with radiation treatments.

Kittytalk, second what skypilot said about exercise and variability from person to person.

Skypilot, really appreciate your starting this — it helped me before, during, and after ADT and SRT. The experiences of actual people were mich more valuable than the guestimates of nomograms and doctors.

Skypilot and Progressing--this thread is VERY helpful! Thank you for your replies. My husband had his first Firmagon shots yesterday and didn't flinch. I'm not sure what I expected but he barely blinked! His doc has a super sweet and gentle nurse. Lupron will follow in 30 days.
He is also doing uro-stim therapy for continence to speed up recovery so he can start radiation in a couple of months, I think. We see the RO next week as well as a PA who will help with possible trimix injections and or a vacuum device.

It is overwhelming at times but sort of feeling normal now.

Thanks again for your feedback and support! I need to figure out a permanent signature

Charlene

I'm pretty sure I asked my RO about that and it was OK. And I did both stationary and outside, though not a heck of a lot. One of my bikes is a standup bike, so it doesn't have the saddle problem.

My knees are not too bad, but my ankles give me a hard time. So biking is good for me also.

Ken... I rode my fat tire all through my radiation a couple of times it was only 0 degrees. Your all healed up from surgery so you will be fine riding bike! It's been interesting I thot that once the prostate was gone I would get rid of the numbness after a 25 mile bike ride but still get it sometimes. Get out and start riding!!!!

Larry

During and for a while after my treatments I rode a stationary recumbent bike some at the Y, sort of like IntheShop mentioned, though his might be an actual road bike. (I also walked a lot -- 2 to 3 miles a day)

My RO tried to discourage me from riding a regular bike during my treatments. He didn't have studies or anything to back it up, but he said he had noticed over time that the few men he treated that did end up having rectal related SE's (bleeding, etc.), that a lot of them biked a lot.

Had followup with my RO today. His back is bothering him again, this time because he and his wife are renovating their condo and doing a lot of the work themselves. Otherwise he’s doing well. I told him I don’t need to see him again for three months.

Saipan Paradise said...
Had followup with my RO today. His back is bothering him again.....

Could be from his ADT.

He’s saying the obvious about my status: undetectable is nice, but we won’t know if the SRT worked until you’re off ADT and your T level rises. He wants me on ADT at least a full year, preferably two. When I asked why so long, he had a simple answer: “You’re G8.”

I've been asked to post my ADT, SRT journey by one of our G9 colleagues. Here goes:

After diagnosis, then radical surgery, I went immediately into Casodex and Lupron. Then 2 months later 39 treatments of radiation including 12 booster treatments. My SEs have covered the gamut. Serious fatigue for at least 6 months maybe even a year. Incontinence for a year and some continuing since when I squat or drink more than 3 alcoholic beverages (due to over relaxation). I had brain fog and pretty intense hot flashes. I lost my balance a bit and screwed up a pretty solid golf game. I have complete ED. I have not tried Trimix. Sp? After 1 year my MO dropped the Casodex because I complained of the brain fog regularly. I saw significant improvement in 10 days and beyond. I had nightly muscle spasms in my lower calve muscles (thought to be as a result of my radiated lymph nodes) that I treat with a bar of Ivory soap in my bed. That's right...you are reading correctly, it works. I take 1 advil PM every night and get plenty of sleep.

I gained about 10 lbs... seemingly due to Lupron but have been slowly working it off via diet and walking daily. I kid about being more emotional than I ever have, and buying a lot of shoes. The emotional thing is true. I have less tolerance for social drinking so i have reduced intake significantly. Maybe just due to age but it seemed to connect with Lupron.

After 2 years, (8-3 month) treatments I am dropping Lupron and moving to simple surveillance. My decision to do this was after 18 months of undetectable PSA. My MO is in agreement and believes that I am now being treated to cure. I hope she is right. She also thinks that my T will begin to return in 6 months or so. I will see what happens with my ED and consider an implant if no natural success.

A few words of advice: Pray a lot, ask your MO/care givers a lot of questions even if they seem silly, attack every day to avoid losing motivation by doing something (if you decide not to work), get involved in fighting the disease (I do fund raising activities), read and listen to other opinions, act on those that make sense, play hard and do what you always wanted to do. We are all in God's hands when all is said and done. I hope this post helps anyone behind me in the process. We have a lot of hope.

Good luck gents!

Thanks Naples! hopefully we can keep the undetectables going!!!!!!

Larry

Kitty,

We are all a little scared. The good news is the research keeps developing new drugs and the Oncologists continue to use their skills to help us. Based on the millions of us that are being diagnosed with this disease, and the awareness, I do believe that a cure is possible. Maybe even for those of us who are in the soup right now. Tell your man to buckle on and do the therapy. It’s a pain in the butt and it has delivered results. I see that you posted both 5+4 and 4+5. The first is a little more aggressive as the first digit shows the majority of cells rated 5. Either way Gleason 9 is aggressive and requires aggressive treatment. This thread will help you understand more as you go. It’s important to be well informed.

Very cool that you are posting. That shows very good support. Keep up the good work and good luck to you both. It’s a team game.