StePeteMN4 days ago

Me, and I'll have something to say about this tomorrow. But now, I need to get some sleep.

treedown in reply to StePeteMN4 days ago

Look forward to it. Goodnight.

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Tall_Allen4 days ago

Maybe this will be useful to you:

prostatecancer.news/2022/12...

treedown in reply to Tall_Allen4 days ago

Certainly looks like it based on the title. Thanks I will read it right away.

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treedown in reply to Tall_Allen4 days ago

Odd. I opened it once and closed it to reply but it was definitely there. Went back to read it and its blank. A note on top said it does not exist. I'll try again tomorrow.

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treedown in reply to Tall_Allen4 days ago

I read it and while not a apples to apples comparison if I am not mistaken its does not appear to offer any benefit. My RO rattled off the trials he used to justify the radiation now but I do not remember them. Convi ced me at the time. Now I am thinking the reason for the delay of the insurance approving might have something to do with its validity.

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davidw7774 days ago

When initially diagnosed, I had surgery to remove one of 3 spinal mets and started ADT.

Currently the other 2 mets are gone. In hindsight, I would not have had the surgery.

treedown in reply to davidw7774 days ago

I would not let them cut me open now, assuming thats what you mean. However, my previous experience with radiation may be leading me to a false sense of security.Thanks for the input.

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londoncyclist484 days ago

The cancer leaves a hole in the bone when it disappears through treatment? I thought the bone regrows.

treedown in reply to londoncyclist484 days ago

Not sure and can't find much detail online but even if it does initially there's risk of the vertebrae compressing or fracturing.

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treedown in reply to londoncyclist484 days ago

From what I have read since your reply it does not grow back.

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Spyder544 days ago

Treedown, Yes I had Image guided SABR/SBRT to the T 5 in my spine. 3 days only. Went to MSKCC in NY-Manhatten upper East side near the Queens Bridge. Dr Sean McBride. I was Oligometastatic with Prostate that 7 surgeons said NO to, and 1 met in T5, 2 mets in pelvic lymph nodes, and one lymph nod in retropertoneal (stmach area).

Had a warm body cast made, which when cinched down allows no movement-important. Then 6 tattoo’s (little dots/freckles) that line up with 6 laser lights on ceiling so you are in exact placement each time. I easily walked 7 blocks to and from the hospital, from our Hotel. No reason for my wife to walk with me, but she did anyway.

Whole process is about 20 minutes of setting up, lining up, reviewing scans, then about 10 minutes of the machine circling around and underneath the bed. Zero pain during or after. I did feel a dull pain in the T5 location as if I had lifted too much the day before, but nothing really, and within 4 or 5 days was gone. I went ice skating in Central Park one afternoon, in the middle of it.

Had 5 days of SABR to my Prostate the same week, which also went well. Waited 3 months to let the PCa to die off, then had my first PSA test which was a new low. That was last January 2022. Each 3 month PSA since then has been lower. My latest PSA 2 wks ago .008 my low nadir. Pylarify PSMA PET 3 mos ago shows NO PCa in T5. NO PCa in Prostate. NO PCa in any organ. 3 small lymph nodes I am working on a solution for now. I am glad I took care of it. Not a cure, but allows our ADT2 to work on the micro mets.

I believe they are learning to do more for Stage4 Metastatic patients like me, as we live longer, and hopefully ADT lasts longer with less burden to work on. I’m now playing Pickleball 5x per week. Played 4 hours yesterday. Burned 1800 calories with 7,000 steps.

Good Luck to you in which ever direction you choose, Mike

PSAed in reply to Spyder544 days ago

Wow, what a great result congrats! I hope you continue to improve and enjoy your life. Best wishes.

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treedown in reply to Spyder544 days ago

Thanks. Did they tell you how big the spot o. T5 was. How much of the vertebrae was effected?

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treedown in reply to Spyder544 days ago

Heck of a profile thanks for entering all of that. Need to update mine.

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Spyder54 in reply to treedown2 days ago

at that time CT and Bone scan lit up like a lightbulb. They said it was quite large, and yes, bone does re-grow. Sometime to much, but that can be dealt with, and in comparison will not kill you. Mike

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treedown in reply to Spyder542 days ago

Thanks by comparison mine must be much smaller because my CT and bone scan was clean.

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timotur in reply to Spyder543 days ago

Keep up the good work Spyder, playing pickelball, etc. By the way, great bio, thanks for writing it for all of us.

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TalentedITGuy4 days ago

I think a proper discussion while riding up Mt. Washington on August 19th is order.

Nothing is better for clear thinking and decision making than riding up a 22 degree incline. Get ready!

Spyder54 in reply to TalentedITGuy2 days ago

i used to ride twice per week with 26 guys in Santa Barbara. My unit was always going to sleep. I would stand up on all the hills to make it wake up. Turns out, that was an enlarged prostate causing the issue. I think its possible that squishing of the prostate by my Trek Madone racing seat may have assisted in squeeaing the horses out of the barn and causing this whole metastisis journey. Have you ever noticed how many cyclists are on this site?

Maybe there are just a lot of cyclists. In my group of 26, 8 had prostetechtomies. If you picture a Tangerinee with a straw thru it, that is an enlarged prostate. Now place it between your saddle and your crotch. If it squeezes out any juice, that is metastaic PCa. I just sold my Trek Madone to my neighbor. My days of road biking are over. I kept a cruiser with a big fat saddle to cruise the neighborhood. Miss the intense cardio, good friendships, beautiful scenic rides in the Santa Ynez Mountains. You mention 22 degree climbs…lthat is for the Pros. 12% grades used to kick my butt. I would go from the front of the echelon, to the back as we slowed from 20 to 6mph. Climb on brother. Whatever makes you happy and keeps you healthy. Mike

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StePeteMN3 days ago

I'm back. I had radiation to remove a large tumor in one of my lumbar vertebral bodies and was warned that there was a chance of fracture if I wasn't kind to my back. I tried to be kind and not create any shock but I did manage to create a compression fracture--probably moving snow with a shovel, and I wasn't thinking about the radiated spine, just mad at my old snow blower that would not start when it was about 0 degrees F (-18 C). So the take-away is the more active you are the more you are in danger. I have no regrets. This was a big tumor and it had to go. Other take away is that snow blowers are cheap compared to injuries. Buy the new snow blower!

treedown in reply to StePeteMN3 days ago

Got it, thanks. Any idea how big the tumor was as far as percentage of the vertabrae? Also how did you handle the fracture? Is it healed now, that you know of?

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StePeteMN3 days ago

I don't know how to quantify the size of the tumor other than it looked pretty ominous on the PET. This thread talks a lot about bone damage post-radiation. But do we know that the damage is worse with radiation vs. after cancer leaves due to successful chemo?

treedown in reply to StePeteMN3 days ago

I understand chemo and radiation has its effects but as I have not had Chemo yet I am primarily concerned about the effects of radiation and maybe calculate my risk better. Thats said I am also establishing some new questions for the RO for prior to treatment and should the insurance company approve the treatment.

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PGDuan1 day ago

Hi Treedown, Tough question and I'm no expert but I had a similar question and decided to go heavy on treatment after consultations and consideration of the PEACE and ARASENS trials. It may still be years before we know from the data the best path , although there is more data out now from the trials. I don't regret it now, but it was a pain. I don't seem to have any material side effects, but I'm probably more beat down than I would have been otherwise had I only done ADT+Xtandi. I'm still surfing on my shortboard most days if there are waves FWIW.

As for me, it was a year ago. I had PSA recurrence and the Pylarify PSMA PET identified possible hot spots on the ribs and C5 vertebrae. My PSA was low but short doubling rate, around 0.7 at the scan. I then had the SBRT to the spots about 2 months after starting ADT+Nubeqa+Docetaxel.

treedown in reply to PGDuan1 day ago

Thanks. That helps.

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PGDuan in reply to treedown1 day ago

I was just listening to Dr Sholtz and a recent PCRI video on youtube about early treatment intensification. Sounds like it's really a personal call, no one size fits all, and depends a lot on the unique situation - age, aggressiveness of PCa history, one's appetite for the tradeoffs, etc. Wish the decision was more clear though...

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treedown in reply to PGDuan1 day ago

Me too. The insurance taking longer than expected made me think maybe there wasn't enough justification for it but when I got approved late Friday it answered that question. I feel like if I do it now I may avoid a bigger issue in the future with the same spots. If they had said chemo I am not sure if doing it would have been easier or harder. The NCCN lists it where I am in the guideline but my MO said I am not ready for it. My cancer is low volume Oligometastatic and I am hormone sensitive. This could turn out really good or bad if it zaps my QOL. But if I lose QOL ans gain time with my family that's a win as well in my book. QOL was concern the first time around and it stayed the same as before dx. I have reason to hope this time it will be similar or only slightly worse. The RO said this is nothing compared to the first time. He doesn't seem like a liar or a fool.

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