Vacation is over - Cancer spread - tw... - Advanced Prostate...

Advanced Prostate Cancer

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Vacation is over - Cancer spread - two spots in the bone and new lymph nodes. Suggestions ?

Longterm101 profile image
29 Replies

I was DX 3 years ago. PSA 20 and only lymph node involvement. No bone and local lymph nodes. Was on ADT for 2 1/2 years. Went on vacation last August of 2021. Lowest PSA was .014. PSA started rising in January. Now 1.2. PSMA scan showed 2 bone spots and several new lymph nodes. MO suggested restart ADT and add Xandi or fly to Vienna Austria and do LU177. Said data is showing doing LU177 earlier has a survival benefit. Thoughts? SAD :( - I'm only 58 and i have 3 young kids :( :(

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Longterm101 profile image
Longterm101
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29 Replies
RyderLake2 profile image
RyderLake2

Hello, My recommendation (for what it is worth) is to do both. With a rising PSA, you definitely need to go back on ADT and Xtandi (enzalutamide). Several German doctors i.e Doctor Samer Ezzidin (and presumably Austrian) recommend being on Xtandi. They feel Xtandi improves the uptake of Lutetium 177. Good luck!

Longterm101 profile image
Longterm101 in reply to RyderLake2

Thx !!!

Tall_Allen profile image
Tall_Allen

Xtandi will increase PSMA expression for about a month. After that, PSMA will be expressed less, so timing is important.

Longterm101 profile image
Longterm101 in reply to Tall_Allen

Thx TA. Would u recommend LU earlier in the line ?

Tall_Allen profile image
Tall_Allen in reply to Longterm101

Worth a try. It's always a balancing act. Earlier is usually more effective for most drugs. But too early, before there is much PSMA expression, only gives toxicity without much effectiveness.What was the SUVmax of the spots that showed up?

Longterm101 profile image
Longterm101 in reply to Tall_Allen

Hi TA

Here is his response

One of the bone lesions (in L5) has an SUVmax of 18.1. One of the abdominal lymph nodes has a value of 4.5. Also in looking a the study further there is also a subtle bone lesion in the posterior 3rd right rib, so in total I can see 5 small bone lesions.

Not sure what it all means

Tall_Allen profile image
Tall_Allen in reply to Longterm101

Usually anything that is significantly greater than the background level (usually over about 3) is significant. Subtle sites in ribs require further validation on the CT or MRI.

Longterm101 profile image
Longterm101 in reply to Tall_Allen

Not good !!!

Longterm101 profile image
Longterm101 in reply to Tall_Allen

TA. If I elect to go back on ADT and add Abby would you recommend I radiate the bone Mets as well ?

Tall_Allen profile image
Tall_Allen in reply to Longterm101

Maybe the L5, but check with a neurologist. The rib lesions require further study.

Longterm101 profile image
Longterm101

Let me ck and i'll circle back.... thx

Longterm101 profile image
Longterm101

TA. RO response

One of the bone lesions (in L5) has an SUVmax of 18.1. One of the abdominal lymph nodes has a value of 4.5. Also in looking a the study further there is also a subtle bone lesion in the posterior 3rd right rib, so in total I can see 5 small bone lesions.

LearnAll profile image
LearnAll

I would suggest get back on ADT quickly and then, slowly plan to book tickets to destinations which offer Lu177 at affordable price. ADT will knock down PSA again for now.

TJGuy profile image
TJGuy in reply to LearnAll

LearnAll.

We know that Detecting PC is difficult at very low PSA levels. And as PSA gets higher it becomes easier.

Does LU-177 and or AC-225 therapy effectiveness reduce similarly as imaging does at lower levels as well.

Subsequent imaging to see effect would certainly be harder.

dorke profile image
dorke

Hi, Our bios and paths are somehow similar.On a similar crossroad I was offered to either restart Abiraterone or do Chemotherapy and later on add Abiraterone.

Since I was diagnosed at a relatively young age (54) I was advised to do genetic tests which indeed found out I carry BRCA2. Were you tested for genetic mutations ? It may add some ammo to the treatments

Longterm101 profile image
Longterm101 in reply to dorke

Yes i was tested 3 years ago when i was first dx.... How are you doing now?

KAgolf profile image
KAgolf in reply to Longterm101

Longterm101, I would suggest a current genome test be done to see what mutations have occurred because of or caused by treatment.I begged doc to do genome test on hubby; he finally ordered one in Dec. 2021 on 11 month old biopsy tissue-complete PTEN loss. IF we had know this 9 months ago when we 1st asked for testing, hubby might not have wasted 6 months on Zytiga.

My research has led me to ask/demand a liquid biopsy. The Dec. genome test gave results for mutations on untreated tumor; after 14 months of ADT and 6 mo. of Zytiga, we need to know if there are now mutations caused by treatment. I believe ZYTIGA doesn't work on him since his T is going up while PSA is going lower--T started going up when he started Zytiga--coincidence?--everyone told me Zytiga wouldn't make it go up. ADT and all PCa treatments cause mutations and deletions and variations, so what are his? I am guessing PTEN loss has activated the PI3K-AKT-mTOR signaling pathway which compensates for downregulated AR and that he now has the AR-V7 variant that keeps Zytiga from working on him. Or is DHT the cause because of UGT2B17 deletion? Hopefully we'll find out if Zytiga or something else is working against him and what

this is why I think you should get a current genome test. best of luck

quote for the day: Spending time on the wrong therapy can be life threatening.

lcfcpolo profile image
lcfcpolo

Hi. Diagnosed at 53, so I get how rubbish this is. Adding AC225 with LU177 maybe the way to go, along with ADT and even Xtandi. RusLand on this forum has had experience of this treatment and can make contact for you in the City of Baku, Azerbaijan. I'm looking into this when my PSA starts to rise. India and Israel are other options. Good luck my friend on your journey.Graham

George71 profile image
George71

PSMA - 617 trial available in US

Ac-PSMA-617 radioligand therapy increases OS in 91 % of trial patients -- just out results:

"Novel radioligand therapy shown to increase survival of metastatic prostate cancer patients"

news-medical.net/news/20220...

Longterm101 profile image
Longterm101 in reply to George71

Thx George!!

George71 profile image
George71

Certainly --- and these guys were mCRPC at the start of the trial -- --- @55 months more than half were still cooking -- and you could be years before being mCRPC

George71 profile image
George71

I think one article said that 48 of the 53 had over 50% reduction of PSA and 30 of the 53 had no evidence of disease

barrybayarea profile image
barrybayarea

I am in a similar situation as you, DX at 55, went on a vacation a year ago and PSA started rising. After PSMA PET scan, radiation, and back on ADT it started going down. Now it has started rising again ;( Seems my cancer may have become castration-resistant. Bone scan shows something around my ribs, waiting for another PSMA PET scan to get more clarity and see if it can be radiated (I was radiated in the same area back in Sept 2021). Maybe I need to ask my doc about LU177 too, running out of options.

Boywonder56 profile image
Boywonder56

I suggest adding earleada.....and no mor vacations......hardly ever get good postcards from someone who takes vacation....not wirth the plane ticket....jmo bw

VHRguy profile image
VHRguy in reply to Boywonder56

I've never been a big fan of "vacations" either. If I can keep the stuff suppressed, I'd prefer that. The few months of "vacation" seem to let the stuff get ahead, yet it takes months to "feel better" as T recovers during the few months of vacation.

(I'm on permanent ADT, with estradiol supplementation to feel my best. That's my personal comfort zone, and I know it's not for everyone.)

Boywonder56 profile image
Boywonder56 in reply to VHRguy

Likewise ...going on 5yrs...lupron or eligard us erleadda..(titan trial)....have dal hystology with a few mets...very aggresive.....from dx they told me adt till it quits working...luckily got in titan trial at dx....and it requires androgen therapy....and have been <.01 for 4yrs just clocked .04 3mos ago new psa on 23rd...mite be start of upward tick.....

slpdvmmd profile image
slpdvmmd

Have you considered a course of taxotere with Abiraterone or a lutamide beginning with the last cycle? Then repeat PSMA PET/CT prior to mop up radioligand therapy that is perhaps even coupled with external beam?

j-o-h-n profile image
j-o-h-n

58 and 3 young kids...........you'll be around to watch all of them get their graduate degrees...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/11/2022 5:57 PM EST

Longterm101 profile image
Longterm101 in reply to j-o-h-n

Thank john God I hope your right

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