Update on my 7th anniversary of learning I had prostate cancer.

[Jackpine]

After 7 years of dealing with this disease (5 years stage VI) I learned this disease can develop work arounds quickly for my particular disease. The last couple of years have been a whirlwind of treatments. In the last couple of years I’ve done 6 LU177, gone through Taxatere chemo twice, SBRT to 2 ribs and my T8, currently, doing Jevtana . During all of these treatments I’ve not been able to achieve a non detectable PSA, and each time my PSA has started to climb after 4 treatment.

While I’m currently doing 7 rounds of Jevtana my C11 choline PET scan showed a new lymph node has become very active so we will pause chemo to allow me to do 5 SBRT sessions to the lymph node followed by 3 more chemo sessions. Overall I felt I’ve made good progress as no other cancer was detected except for this one lymph node. I know given my history the beast will return but I hope for at least a short break from treatments to allow my body to heal.

The warriors on this site are amazing! The stories of success and failures keep us going and gives us reasons to fight. A salute also to all the care givers who give us support and encourage us to take the treatments that gives us more time with family and friends.

[tom67inMA]

You are not alone! I did very well for my first 14 months with cancer, and then it turned neuroendocrine. I'm now on the my third type of chemo in the past year. Carboplatin+ worked very well but the cancer came back three months after stopping. Jevtana did nothing for the nueroendocrine in my liver which grew with astonishing speed, but did lower my PSA and stopped progression in a rib. I'm now on folfiri (normally used for colon cancer) and am responding to that. Since my cancer can grow back very fast we're planning to continue folfiri for as long as I can tolerate it and it continues to work.

The point of me talking all about myself in this reply is that for many of us multi-year survivors we seem to get few if any remissions by any definition of remission. It's a constant battle jumping from one drug to another, making it very hard to plan for life "after treatment" (counting Lupron, etc. as maintenance therapy and not treatment), and always needing to come up with new solutions to the side effects brought on by changing treatments.

I hope you get an extended break, you've been at this much longer than me.

[greatjohn]

I couldn't help but notice we're both 7 years out...an I've been stage 4(IV) most of this time....I noticed you say stage VI....I'm assuming the V and I got flipped....but, on a humorous (macabre) note...I tell my oncologist that I am now in Stage 5(V) which we all know doesn't really exist...but since I've gone past my expiration date for stage 4...I figure I need to bump up to 5....You're trumping me, though, with your Stage 6 ! ! ! LOL. I am just at a point I have to do yet another treatment and am looking into LU-177, but don't want to do if if it's only a stop-gap measure like it seems to have been for you. I'd have to travel outside the U.S. (scares me) AND it's rather costly. Where did you have your LU-177 if I might ask? How low did the PSA go after these treatments...and how soon were you off and running to the next treatment after doing it?

gJohn (Stage FIVE and holding...LOL)

[Jackpine in reply to greatjohn]

Great John,

I think I’ll start a new trend with stage 6. I did also notice we’ve been on similar treatments paths. The Lu177 I received was part of the Vision trial. I responded well as I was head to toe bone Mets and those cleared and since the treatment my bone metastasis has been held at bay. I finished Lu177 in May of 2018 and was back doing chemo 6 months later.

So I think LU 177 certainly helped me but. It didn’t give me long lasting remission.

[greatjohn in reply to Jackpine]

I wish that you could have reported more than 6 months before starting Chemo again...it makes me wonder if it would be worth the costs...as any trials now available in the U.S. I am not a candidate for...to do it for only 6 months (after a few months of actual down time doing it)....Hmmmm. Food for thought...one of those "damned if you do/damned if you don't" kind of moments. And I do have to make a decision soon....my PSA keeps doubling...with it at 48 last month and mets keep popping up (small, but multiple now)

[Jackpine in reply to greatjohn]

Since I’ve done the LU 177 the amount of bone Mets has reduced to nothing. Most of my active cancer now is in my lymph nodes. Good luck on reaching a decision I know it’s a tough one.

[Peterd110 in reply to Jackpine]

Do you think you will have more Lu177 when it is approved in the US?

[Jackpine in reply to Peterd110]

I do believe I will have move LU 177 when it’s available here. I responded very well last time but my cancer started growing again after about 5 months. I think LU177 combined with something else is need to get longer remission.

[HopingForTheBest1]

Great post. Very informative. Hopefully sometime soon LU177 treatments will be available in the US outside of just clinical trials. I assume you traveled out of the country to get this treatment?

[Jackpine in reply to HopingForTheBest1]

I was part of the Vision trial so I received my LU177 at the Mayo.

[Hidden in reply to Jackpine]

Which Mayo facility?

[Jackpine in reply to Hidden]

I was at the Mayo in Rochester MN

[snoraste]

You still have a few options in clinical trials. If you are still PSMA avid, you can look into a CAR-T based PSMA, or change the radioisotope to Thorium/Ac225 (I know there are a couple of trials there. Try Thorium because of lower side effects). You can also explore FAPI-based clinical trials if you are not PSMA avid, or after others fail (not sure about the exclusion criteria of these trials).

An alternative would also be a clinical trial addressing the resistance to AR blocking drugs (eg. Abi/Enz). Do a search here on this forum, and on google (Alan's website as well). You are not going anywhere fast!

Did you do a genetic testing? any actionable genes?

[Jackpine in reply to snoraste]

I have a pic 3ca mutation but nothing else

[NecessarilySo]

I'm near my year 8 since stage 4 discovery. The PSA blood test was the way it was discovered. I have avoided all but hormone therapy. Just putting this down for comparison because it helps to see what others are doing. I have a chart of my PSA from 2008 when the cancer was discovered due to urinary blockage. The stage 4 came three-plus years later, I believe due to the biopsy. I had rad therapy in 2008, so the only possible cause of the stage 4 I believe was the biopsy. Also the beginning location of mets was same location of biopsy. But luckily it seems under control, now I am 75 years old and in pretty good condition. Click on the image to see rise to 35 and then fall to <0.1 due to Lupron Xtandi.

psa 12 years still ,<0.1

[Jackpine in reply to NecessarilySo]

Awesome results! This disease is so different for each individual.

[j-o-h-n]

They call it the seven year itch...... I think it's time you scratched it....

Good LucK, Good Health and Good Humor.

j-o-h-n Wednesday 03/03/2021 6:28 PM EST

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

J o h n

Could b fleas or bedbugs causing you that itch.

Orkin might have a clinical trial you can join.

Or.... you could always try an old fashioned treatment.... a B-A-T-H

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

Bitinghard,

I haven't taken a B-A-T-H since someone stole my rubber ducky....

But as the saying goes......My name is Rubber Duck but I don't give a flying............................. ..............................feather.

Good LucK, Good Health and Good Humor.

j-o-h-n Saturday 03/13/2021 4:25 PM EST

[monte1111 in reply to j-o-h-n]

I love my rubber ducky ...... it quacks with a New Yorker accent.

[j-o-h-n in reply to monte1111]

So you're the one who stole it..........I'll have to my send my boyz from HollyHood to your house to retrieve it....

youtube.com/watch?v=0ykYqkE...(Not working as expected?)

Good LucK, Good Health and Good Humor.

j-o-h-n Sunday 03/14/2021 1:34 PM DST

[monte1111 in reply to j-o-h-n]

And now, here he is: the one, the only ..... J_O_H_N! Your boyz will need to know the secret word.

[j-o-h-n in reply to monte1111]

The secret word is "WOOLLEY".....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/14/2021 5:30 PM DST

[monte1111 in reply to j-o-h-n]

Sam the Sham? He lives right down the street. The Pharaohs were all deported.

[j-o-h-n in reply to monte1111]

Nope more like his neighbor Mont the Monk. The Priests were all arrested.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/14/2021 6:01 PM DST

[monte1111 in reply to j-o-h-n]

Mont the Python who became Mont the shriveled worm? The clowns all escaped, last seen on a bus to New York City.

[j-o-h-n in reply to monte1111]

Mont the Woolley...who came to dinner......and died on the radio........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/14/2021 6:39 PM DST

[monte1111 in reply to j-o-h-n]

Any reply would have me banned in Boston. Did you know Edgar?

[j-o-h-n in reply to monte1111]

Did I know Edgar you ask? Of course, we went to different schools together....They won't ban you in Boston...if you wear red socks..........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/14/2021 10:06 PM DST

[CJ4J]

Thankful you're still here and fighting Jack. We were just thinking about you and wondering how you were doing. My husband is a few months behind you after he completed 6 treatments of LUT-177 on the Vision trial. He got 6 months before reoccurrence, then radiation to prostate which has now failed and then a few months later SBRT to rib and T7. Headed to Mayo next week as PSA is advancing . Will see what's next. Thank you for sharing your latest update, our thoughts are with you as you battle on!!!

[Jackpine in reply to CJ4J]

CJ4J,

Thanks for your note and glad to hear your husband is still fighting. I’m hopeful that one day something will come along and give us all long lasting remission or cure.

Seems like a lot of hope still for LU177 variants.

[Avanat]

Thank you for posting and thanks to all others who responded as it gives me hope. It helps to know so many of you are still going strong after years from Stage IV diagnosis.

My husband (Stevana on this site) was diagnosed right out of the gate with Stage IV, with extensive bone and some lymph node Mets. We are coming up (March 26) on our one year anniversary of his diagnosis. He started on ADT right away then chemo and immunotherapy (Nivolumab) as part of a clinical trial. He has his first post chemo scans next Wednesday so we are anxious to see if any of the bone lesions and lymph node cancer have gone away. I am praying he has many more years like those of you here. Stay strong guys and thanks for being such good examples for my husband and I.

[Jackpine in reply to Avanat]

Avanat,

This disease will test your husbands will. Having you with him will give him strength to take the next treatment, and to fight this disease. But you will have failures and success and celebrate even small wins.

Best of luck on your upcoming treatments and scans.

[Avanat in reply to Jackpine]

Thank you. I hope your treatment works too and you celebrate many more anniversaries.

[monte1111]

Wishing you the best. I'm four years in now. March 6, 2017, diagnosed Stage IV. It was a Monday. About 9 a.m. Funny how a person remember some dates, and where they were then. What a long strange road it's been, we've come a long way and etc. etc. Enjoy.

[Jackpine in reply to monte1111]

Monte,

I know and I find it strange that I look forward to the date each year as I think of it as another year I’ve kept the beast at bay. I promised my wonderful wife 20 more years last year and I look forward to spending the next 19 still holding her hand.

Wishing you the best in treatments and may you keep the beast at bay!

[monte1111 in reply to Jackpine]

I wish you both another 20 years. Crosses and garlic may keep j-o-h-n at bay.