Update On My Journey

azrr - I had ART approximate 5 months after surgery with PSA <0.10 at 3 month PSA. The same decision making process is involved with a PSA = 0.022 except that you are a year past surgery.

I am not so sure I would pull the pin at 0.022 given that your pathology is pretty decent with the exception of the Decipher score which is not a foolproof criteria like all that is PCa related. However, getting on with your T program can be your driving issue based on what you have outlined.

ART in 2019 was not difficult and lasted almost two months which was an eternity at first until you can see the end in sight. As far as I know, the ART/SRT standard is still 35-40 sessions at approx. 1.8 gy per session as a "mop-up" operation covering a large volume with no specific target. There were no magic fast treatments like SRT given the nature of the treatment and I asked my RO for the quick version.

Full bladder and empty colon was the rule and checked every day. This is can be harder that it seems depending on your GI tract situation. I practiced the week before treatment as the clinic was only 15 minutes from home. My first two treatments were at odd times due to scheduling issues then settled in at 9:00am for the remainder. I would get up at 6am, make coffee, read news, eat breakfast, shower, and bathroom visits as required. I would get as empty as I could to have a repeatable starting point then start drinking water about an hour or so before treatment to arrive with full bladder. They were pretty tough on me the first week and I always got the scan status from them.

My side effects were itchy pubic area early on, some urgency near end and after treatment, tiredness near end and after treatment. They did a good job of minimizing side effects which I attribute to being strict about full bladder, empty colon. They would not hesitate to send men back to the lobby for more water and a 15 minute delay when necessary. The empty colon (poop or gas) was another matter which is not quite so simple. The techs have seen everything so they know more than the doctors about side effects, etc.

As long as you have a good RO at a good facility, you should do ok. I would stop at the clinic then continue on with running errands or whatever like normal. I already knew where all the bathrooms were in all the stores so any urgency issues were handled easily. I was continent after surgery so in good shape for urgency issues. I can imagine it being more of an issue if continence remains a problem at radiation time. Radiation tends to stop progress on the ED front which can be one reason to delay SRT as the doctors told me. I chose the odds over ED but that was my decision alone for ART.

If you have urgency issues holding water before treatments, the techs will introduce you to the "clamp". I had an "empty bowel" issue one day and told the techs I could not correct without losing the full bladder thus the clamp was presented as my new friend. Takes a little getting used to but not bad once you learn to relax.

Every one of my treatments was preceded by a quick CT scan to locate bladder and rectum and compare to imaging and treatment plan. Too much variance makes too much correction necessary for RO to sign off on. During the planning session, they made a form for my butt and thighs and also added the small dot tattoos for lining up your prostate area during treatments. Basically you just lay there and watch the equipment work for the few minutes that the actual treatment takes, amazing technology that is not so amazing after about 20 treatments.

AZ, hard to add much to the above responses. I'll just say, for me, it was not nearly as bad as I anticipated. just annoying getting up at 5AM every day for 8 weeks. but you will find the experience, manageable in all likelihood. for me the ADT was harder to deal with than SRT, although it too was manageable. sounds like you are not doing ADT, so if I'm correct in that assumption, it really won't be tough for you.

Do your best to follow the directions of the full bladder. I did my best but did get radiation cystitis anyway that has resulted in hematuria 5 years delayed.

Galileo said...
I had SRT, but it was a long, long time ago. (I just posted a summary of how things have gone recently). I had IMRT. It went very well. I didn't even take time off work. I just took a break each day and went a couple of miles away to the hospital, dropped trousers a bit, and laid still for a bit. I had a little bit of bowel problems that got better on their own a few weeks after everything was done. No bladder issues. And it worked. My PSA had been rising pretty rapidly after surgery, and here I am 16 years later, less than 0.1

That's very encouraging, thanks for the post (and thanks to the others here as well, which has been encouraging). My first meeting with the RO is this Thursday. Hoping to get things going quickly, as we have some plans for travel this fall. As it turns out, the most major player in this was my high Decipher score (.87). Combine that with my need for TRT and the increase in PSA (0.008 to 0.022 in 3 months after restarting TRT), the surgeon wants all the cooties killed.

Finished 18 months on Orgovyx. One pill a day, took my T level to zero and PSA to undetectable. Almost three months off now and T level has recovered and a slight rise to my PSA. SEs were, gut weight gain, some sweating at night and whenever I got hot or ate spicy food. I got tired in the afternoon, but a short nap helped my energy to comeback back. Total Loss of libido. Through all that it did not affect my daily routine. My best to you,
Jack

azroadrunner
Sounds like a winner for Jack and hopefully for you too. I found this on google search.
"Orgovyx may affect the heart’s electrical properties or cause electrolyte abnormalities, therefore healthcare providers should consider periodic monitoring of electrocardiograms and electrolytes."
So keep up with a cariologist or GP along with you ON Doc visits reguarly I guess.
Wingin it

Jack64 said...
Wings, I had some circulation issues before PC, PAD, and had a full cardio work up. Although It found no heart problems, my Uro put me on Orgovyx, because he said research showed less Cardio interactions than other forms of ADT. I would guess all ADT has some SEs related to the heart. In any case after 18 months of Orgovyx and further testing, still no heart interactions. My best to all,
Jack

Per my RO, Orgovyx is easier all the way around, including on the heart. I have no heart issues to be concerned about (that I know of), but in the grand scheme of things her preferred choice for ADT is Orgovyx. Orgovyx is preferred for patients with "advanced" PCa (which I don't have); however, many ROs prefer it anyway for shorter-term treatments, such as for SRT. It knocks out T much faster, and recovery is faster. It's a very expensive drug, but fortunately my insurance covers it.

If left untreated, my T-level never goes above about 80 or 90. Been that way for many years, which is why I've needed T-shots to get up to a reasonable level. Then PCa stopped by for a visit. The good news? I already know the low-T playing field -- Orgovyx isn't going to surprise me. Totally unmedicated I get the sads, hot flashes, night sweats, and high blood lipids. The big question is if my PCa will disappear enough so I can resume T shots

On a related note, something my RO recommended is that in the meantime I visit with an endocrinologist she recommended and have my naturally low-T problem evaluated further. I've also got low thyroid and take regular medication for that.

In the meantime, I'm working like hell to keep any weight gain off (lose some weight, hopefully) and stay active enough to fight away low energy.

Getting old isn't for sissies.

Good to hear that it is going well. The heat in the SW as well as most of the south is not a fun fact when you are on adt. I will have to Google mounjaro to see what that is. Stay cool and keep us posted.
Michael

60Michael said...
Good to hear that it is going well. The heat in the SW as well as most of the south is not a fun fact when you are on adt. I will have to Google mounjaro to see what that is. Stay cool and keep us posted.
Michael

Yesterday was 110. In the shade. Today will be about the same, and I have to go out for a pre-radiation PSA & Testosterone blood draw, but will do that this morning to avoid the heat. Fortunately the monsoons are moving in and the rains will begin lowering the temperature. The heat doesn't help with the hot flashes -- but fortunately I've had very few of those so far.

Mounjaro (which I never heard of until my GP mentioned it) is a recently approved (2022) weekly injectable that improves your body's production of insulin and lowers the amount of sugar your liver makes. It also slows the rate that food passes through your body, which makes you feel fuller much longer. She felt it would be a useful accompaniment to the Orgovyx, as a means to counter the blood glucose increases and weight gain. I'm not obese, but could comfortably lose a few pounds. My insurance covered the Mounjaro. Out of pocket it would have been outrageous. There are people using it off-label exclusively for weight loss -- probably going to those boutique weight loss clinics. Apparently it works quite well for that.

Jack64 said...
The treatments will come and go fast. Are they using Space Oar to protect the rectum? If not, ask why not? I am sure you know how to dodge the heat. Do your walking either inside or very early in the morning. I found that having iced water or tea on hand with a portable fan helped the hot flashes considerably. My wife’s hot flashes were different than mine. Her’s seemed to get hot to the point of pain, where I had minor sweating.
Wishing you my best and this treatment will be your last.
Jack

There was no mention of the space oar. Could it be because I no longer have a prostate (this is SRT)? My Decipher score came back pretty high (.87) and PSA went from 0.008 to 0.022, so they want to kill off any remaining cooties.