Happy anniversary?

[Jpburns]

It was exactly 1 year ago that I got my first elevated PSA test that started my prostate cancer experience (I don’t like to say “Journey”). Details in my comic. (burnscomic.com)

After that, I had another PSA test (still elevated a month later), a pelvic MRI (showing pi-rads 5 areas), then a fusion transrectal biopsy (12 out of 14 samples cancerous, several Gleason 9), and a PSMA/PET scan that showed spread (only) to my pelvic lymph nodes. This was in November.

In December I started ADT (Orgovyx). In March I started 28 sessions of EBRT (external beam radiation therapy) over 5 1/2 weeks. After that I added Abiraterone (Zytiga) and Prednisone for so-called doublet therapy.

The good news is that the radiation and drugs knocked stuff back, although I have to continue taking these drugs (with severe side effects) for at least 2 years.

So… happy anniversary to my first sign something was wrong.

[vintage42]

You said " In December I started ADT (Orgovyx)... After that I added Abiraterone (Zytiga) and Prednisone... (with severe side effects)..."

What side effects are you getting? I began the same drugs at the same times as you, but only side effect is thinning and discoloration of forearm skin with easy skin tears. From the Prednisone, I think.

[Jpburns in reply to vintage42]

Brain fog. Muscle mass loss. Fatigue. General weakness. Digestive issues.

[Grandpa4 in reply to Jpburns]

I had same therapy for 2 years. I lifted weights which eliminated the muscle loss and weakness. I still suffered from a loss of mitochondria that made my endurance less and gave me a slightly elevated hemoglobin A1c. Aerobic exercise really helped the fatigue. Really hoping not to go back on it. I am 8 months out with an undetectable PSA. I know my odds are great. Guessing the digestive issues are from the radiation. I found that the FODMAP diet really helped that.

[Jpburns in reply to Grandpa4]

I’m being good and going to the gym every other day. Walking on the other days. If you knew me, the idea of me exercising at the gym (mostly machines, plus a rower) is pretty amazing. Never did much before, except the walking.

What’s FODMAP (googling now…)?

[Grandpa4 in reply to Jpburns]

There is a FODMAP app that lets you know the foods to avoid. I was a very active aerobic exerciser but avoided resistance training like the plague. I hired a personal trainers and he worked me out hard twice a week. I did a weight that I could barely do 10 times 3x. Tried to cover arms legs and abs. Despite all that I did I still gained 7 lbs. Prednisone made me hungry.

[dhccpa in reply to vintage42]

Have you tried easing back just slightly on the Prednisone? Apparently getting the dose right is a highly individualistic thing.

[Jpburns in reply to dhccpa]

I’m on 5mg, which is the low dose, I’m told.

[dhccpa in reply to Jpburns]

Sorry, I meant that for Vintage with his skin issues. Your issues mostly sound like hormone therapy SEs.

[vintage42 in reply to dhccpa]

In appointments in May and last week, I asked the urologist about going from 10 mg to 5 mg. He said 7.5 mg of Prednisone was the minimum amount to counteract 1000 mg of Abiraterone, and that I might have problems at 5 mg. My monthly monitor labs for the first 3 months on Abi + Pred were good, so I don't have another lab for 3 months. I feel great, and don't want to try 5 mg on my own now with no monitoring. However, I have another opportunity to discuss the dose in a few weeks with a medical oncologist I have added to the team.

[dhccpa in reply to vintage42]

Interesting. There do seem to be men on 5 mg of pred.

[vintage42 in reply to dhccpa]

A lot are on 5 mg. I don't know what their Abiraterone dose is, or if anyone can compare how they feel on 5 mg vs 10 mg.

[babychi]

we are 7 years post diagnosis and 3 years since any treatment. There is hope, life and happiness after the crappy anniversary.🌺

[Jpburns in reply to babychi]

Yeah… just noting the date. Thanks for the kind thoughts.

[dhccpa]

Sounds good so far, if I'm understanding correctly. Best of luck

[Jpburns in reply to dhccpa]

Yeah, I see many here who are much worse off. Feel guilty about bitching about my little aches and pains. But the anniversary kinda brought it all to focus. Feel like I’ve (and my wife) have been experiencing low-level stress for… almost a year.

[addicted2cycling in reply to Jpburns]

Being a pessimist has helped me with living a stress free life.

In 2015 and almost 65yo I had a biopsy due to DRE resulting in lump being felt in the right side of my prostate. EVEN BEFORE being given the biopsy results I told myself that I had PCa and that it likely had metastasized so go research AND prepare for hard times.

Gleason 5+5 but no mets. ---- SO I was CORRECT that I had PCa and pleasantly surprised that it was contained.

Being a pessimistic person means I am ALWAYS RIGHT (and prepared) or PLEASANTLY SURPRISED.

My mantra is *Like Water OFF a Duck's Back* so deal with it 'cause there's always someone worse off.

Good LUCK Jpburns

[Jpburns in reply to addicted2cycling]

See, I was a pessimist and was sure I had PC with metastasis…

… and I did. I hate it when my pessimism is confirmed.

[j-o-h-n in reply to addicted2cycling]

Never mind.. it isn't good enough.

Good Luck, Good Health and Good Humor.

j-o-h-n

[j-o-h-n]

1 year? Celebrate!! Perfect time to order a whole take out pepperoni pizza for you and the boss. Celebrate, man, celebrate!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[addicted2cycling in reply to j-o-h-n]

Don't forget the Chocolate Chip Ice Cream - 2 scoops for dessert?? 😁

[j-o-h-n in reply to addicted2cycling]

Topping?

Good Luck, Good Health and Good Humor.

j-o-h-n

[addicted2cycling in reply to j-o-h-n]

Chocolate syrup + crushed almonds

[j-o-h-n in reply to addicted2cycling]

You're been on your bike too long............ I was referring to ice cream topping on the pizza?.....not topping on the topping......Keep peddling.......(and stay well - Hey Abbot!!!)...

Good Luck, Good Health and Good Humor.

j-o-h-n

[addicted2cycling in reply to j-o-h-n]

Still trying to figure out Who's on First????

The 2 scoops are ON THE PIZZA for an Entrée/Dessert combo to speed things up since we have limited time left. 😁

[j-o-h-n in reply to addicted2cycling]

I got confused (just like I was on my wedding day) since I don't know if he should pay cash or with his card. Also tax on tip?

BTW What's on second?

Good Luck, Good Health and Good Humor.

j-o-h-n

[addicted2cycling in reply to j-o-h-n]

I don't know!!!

[Jpburns in reply to j-o-h-n]

Just the tip, John.

[Wings-of-Eagles]

Good on you, Keep the Faith brother, experience is a good word for it, keep saying that for you, but after 12 years for me, I'm still on what I like to call, this Journey.

Wings aka Dan in So Cal

[mababa]

Happy anniversary, Jpburns. Your journey parallels mine very closely, as I’ve noted before. I had a longer denial phase and lacked an MO who might have pressed me to start treatment earlier. Has to do with living in a rural area. I started Orgovyx in Feb, and because of a spacer delay, am only now about to start EBRT—this Monday in fact. It’s been about a year since the biopsy. 28 sessions are prescribed, same as you.

Question for you, are the radiation side effects about what was predicted and are they manageable?

[Jpburns in reply to mababa]

I found them to be manageable. Got more frequency of loose bowel movements in the last week, but that cleared up. Was increasingly tired. And my chronic lower back pain reappeared in week 5, but probably unrelated.

By the way, no spacer was recommended in my case, which I guess had to do with my specific targets.

I’m going to have my first colonoscopy in 15 years (!) in two weeks because of some bloating/digestive issues. May be radiation related, but don’t know yet.

But overall, and on my particular case, I was very happy I chose to do radiation over surgery (again, because of the particulars of my diagnosis).

[mababa in reply to Jpburns]

Thanks for the info. From all that I’ve read, once the cancer is out, surgery is not recommended. It doesn’t eliminate the need for RT on the bed and there are more potential SEs. At least that’s how I was guided. And lots of people skip the spacer w/o issues. I am worried about urethra damage. But that doesn’t usually show up for at least 5 yrs or so. No info as to whether my RO will recommend additional drugs although she’s mentioned Aberaterone a few times. Best wishes in the continued battle against this thing. BTW, I’m a Bull Dog myself. Attended UGA 70-72, Dooley’s Dawgs era, before the Army.

[Jpburns in reply to mababa]

Adding Abiraterone supposedly increases survivability by 33%, which is why I’m taking it.

Btw, I’m enrolled at UGA in their “over 62” program. Free! Mostly taking art classes because I really enjoy them.

[TeleGuy]

I'm a bit late to your anniversary party but want to give you my best wishes but mostly a thanks for doing the comic, which I finally downloaded and read last night! You really captured that sense of angst and uncertainty that comes with the train wreck of getting a diagnosis. I certainly went through that with no sense of how long I might live. I hope that, in the coming year, you will recover more fully from your radiation and start living like I think many of us on this forum live: you endure a treatment that makes you feel like crap for a while, and then you rise up again and have a period of making the most of life. I'm in one of those periods of really enjoying life, and it makes the struggles of just a few months ago recede in the rear view mirror.

[Jpburns in reply to TeleGuy]

Thanks! I appreciate the kind words, especially about the comic.