Crossroads - ADT or wait for psma pet... - Advanced Prostate...

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Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow

Vany4 profile image
41 Replies

My husband has oligometastatic prostate cancer (lymph node only, pelvic and Retroperitoneal) , recurred one year ago. His psa is doubling every 3 months, and is now 1.73. We had a psma pet scan in September that showed 2 lymph nodes with semi-weak psma avidity, to which our radiation oncologist believes we should wait until his PSA reaches 4 or 5 for another scan, which seems like a long time to wait, or, start ADT (lupron, abiterone) now, which would preclude another psma pet scan. Tomorrow we meet with the regular oncologist to discuss options and I’d like some input here. My husband has been off lupron for over 2 years since he had SBRT which was successful since 2017. He is still hormone sensitive. The lymph nodes that showed on the psma pet scan were already radiated, so sbrt on these are not an option. If they show up elsewhere, the radiation onco would consider radiating, but if there remains some in the area he radiated previously, we are not sure this is really a viable option.

We really would like to try LU 177 treatment outside of the country, and right now I’m trying to get him accepted in Germany, but so far no luck because he is not on death’s door yet (Technical Univesity of Munich), or per dr Baum at Bad Berka, wait until psa rises and do another scan (but dr Baum is leaving this month). If anyone can recommend a good place in Germany or Australia to contact who will treat patients still hormone sensitive, please let me know.

I’m contemplating going for another psma pet sooner than 4-5 psa outside of the hospital where he’s being treated, perhaps in Germany in a place that may treat him with LU 177.

We are just concerned that waiting until his pSa is 4-5 before treatment may be risky.

(History - RP 2014, Gleason 4+3, tertiary 5, positive lymph nodes removed, adjuvant radiation 2014, recurrence 2016, sbrt 2017, recurrence 2018. Psa doubling every 3 months). He’s only had lupron for one year with 2014 external radiation, and 4 months with sbrt in 2017.)

This is all so complicated as there seem to be no easy answers, and the radiation oncologist said so as well. It’s our call.

Thank you

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Vany4
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GP24 profile image
GP24

You could get these mets radiated with SBRT instead.

ascopost.com/news/september...

LU-177 is only given to men who are castrate resistant and generally after other treatments like Zytiga, Xtandi and chemotherapy are no longer effective. PSMA expression is also better in most cases after castrate resistance.

IMO, ADT is the best treatment for him now, possibly in combination with radiation to the specific mets. That's what I would do.

GP24 profile image
GP24

I had my lymph node mets treated with Lu177 while being hormone-sensitive. The doctor made an exception for me. However, I had more than five mets before the treatment.

I would not get it done for just two lymph node mets. As I mentioned, you can get these removed with SBRT radiation. If you treat the two mets new ones will show up in about a years time. I compare it to weeding the garden. You get rid of the weed and the garden would be a mess if you would not do it, but you know that the weed will grow again. Therefore I would not do it with Lu177 to get rid of two mets.

Vany4 profile image
Vany4 in reply to GP24

Where did you get treated with LU 177?

GP24 profile image
GP24 in reply to Vany4

I could not convince you to do SBRT instead? It was Prof. Baum at Bad Berka. I think he will not treat just two lymph nodes with Lu177, however.

tallguy2 profile image
tallguy2 in reply to GP24

You're absolutely correct. I tried it too (insurance even covered it) and within a year more mets appeared. At this point a man with systemic disease needs systemic treatment (drugs).

Vany4 profile image
Vany4

Thank you for your responses. The problem is the areas with those 2 nodes were already radiated so the Dr doesn’t want to radiate them again.

GP24 profile image
GP24 in reply to Vany4

With SBRT you can do that. I had lymph node mets radiated with SBRT, but they chose a dose that was too low to achieve local control of the lesion. A year later, the same lesions were radiated again with SBRT at a different clinic.

Vany4 profile image
Vany4 in reply to GP24

Good to know. His doctor is against it but maybe we should look elsewhere. His dr says these areas were already radiated twice

GP24 profile image
GP24 in reply to Vany4

In a different thread you wrote that your husband had salvage radiation and following that focal radiation to the nodes in 2017. Therefore your doctor said you had radiation twice. A focal radiation with SBRT can be done in areas that were already radiated. On the hand the affected lymph node can be located where it cannot be radiated. You should discuss this with an RO who does SBRT or SABR radiation.

Tall_Allen profile image
Tall_Allen

There is no research showing a survival benefit of going chasing after mets, but there is definitely a survival benefit of using Lupron+ abiraterone as early as possible. So I would definitely not hold off on proven therapy going after pie-in-the-sky possibilities.

As for PSMA therapy - it is obviously too early. PSMA expression increases with time and later decreases. The best way to use it is when PSMA is maximally expressed and before many non-PSMA mets have shown up. What you don't want to do is select for early or late non-PSMA expressing cancer and cause them to take over.

Vany4 profile image
Vany4 in reply to Tall_Allen

How does when know when the right time for psma expression is high? My husband’s psma scan in September showed some expression in 2 nodes but not as avid yet

Tall_Allen profile image
Tall_Allen in reply to Vany4

I understood - so it is obviously too early.

Vany4 profile image
Vany4 in reply to Tall_Allen

Would starting on Lupron / abiterone now preclude the ability to do a psma pet scan because the Mets won’t show up on a scan? This is my concern but not sure how valid that is

Tall_Allen profile image
Tall_Allen in reply to Vany4

Actually, there is a temporary increase in PSMA followed by a long term decrease. PSMA is not his opportunity right now - abiraterone is.

marlins1 profile image
marlins1 in reply to Tall_Allen

As you state"What you don't want to do is select for early or late non-PSMA " Would a better choice be early Dox for Vany4 while the tumor burden is low?

Tall_Allen profile image
Tall_Allen in reply to marlins1

Docetaxel is not a good choice for pelvic lymph node-only mets (N1M0). STAMPEDE showed no benefit in men who did not have distant mets.

Search older posts in this forum. I remember reading a spouse reporting that her husband had been accepted for Lu177 treatment in Vienna even though being ADT naive.

Vany4 profile image
Vany4 in reply to

Thanks, I’ll look

Claud68 profile image
Claud68 in reply to Vany4

I think justfor meant us. My husband had no ADT at all, with a Gleason 9 and stageIV. He had RP a year ago and with a Ga68 psma petscan, 6 mets in lymphnods were found. So he was treated in Vienna/ Austria by Prof. Markus Hartenbach even he was totally hormone naive.

You could ask Prof. Hartenbach what he is thinking about your husband's situation.

On the website minute-medical.com you will see a lot of information. He speeks English very well and his phone number is +43 677 625 45515. My husband's psa is still dropping after three treatments with Lu177 and he gained a year of quality of life. The treatments with Lu177 were without longlasting sideeffects. So we are very thankful to Prof. Hartenbach to be the only one to accept my husband for Lu177.

Vany4 profile image
Vany4 in reply to Claud68

Thank you! I will contact him. Did you contact him by phone or email?

Claud68 profile image
Claud68 in reply to Vany4

He was contacted by the oncologist, Prof Shariat. You can try to contact him by phone or email. He responds veryquickly . You can tell him that we told you about him, my husband is Nicolas from France. Good luck.

nycrunner profile image
nycrunner

Hi

You need to address the primary source of the cancer in the prostate as a first priority.

I went to the 3D Urology Clinic in Xiangtan.

I met a number of USA citizens there and from many other countries.

With GS 9 and Stage 4 it took 6 weeks in China for Dr Soongs medicine to get rid of my tumour.

He gets results.

Secondly you need to address the spread outside the prostate.

I purchased a PEMF Device from a company in LA.

Have a look on YouTube and Bill Donolly presenting a TED address on Electro Magnetic Theraphy.

I have been using the device since July at 4 times per day x 25 to 30 minutes.

The PET Scan results from Monday's test indicate in the Radiologist's terms " there is a subtle CT evidence of healing sclerosis".

I take this as a positive indication the things are headed in the right direction.

All the above are without drugs and zero side effects.

Dump any idea you will find a long term solution relying on the pharmac greedy companies.

Good luck.

urotoday.com/center-of-exce...

clinicaltrials.gov/ct2/show...

Some new trials moving Lu177 up sooner in the treatment cycl e. I dont know if this applies to you or not (I am new) but it seemed like it was in the ballpark.

marnieg46 profile image
marnieg46

Hi Vany4.

I'm sure the advice you have received so far is well informed and provided by those far more familiar than I am with the science of managing this affliction. However, if at some later stage, when and if it's appropriate you wish to find out more about accessing Lu 177 in Australia Patrick-Turner on this site writes regularly and very positively about his experience with this treatment.

Vany4 profile image
Vany4 in reply to marnieg46

Thank you

Hawk56 profile image
Hawk56

My short history, surgery in March 14, T2CNoMx, GS 4+4, margins, ECE and SV negative. BCR 18 months later, SRT in March 16, completed in May, OSA in August was .7 then a month later 1.0 so that failed. PSADT and PSAV were rapid, went to Mayo in Jan 17, C11 Choline scan showed four PLNs but no bone or organ involvement.

We did 18 months of Lupron, six cycles of taxotere and 25 more radiation treatments. Response was immediate as PSA dropped to >.1 with the first ADT and taxotere and stayed there. Mayo was considering adding Zytiga but given my response decided not to.

Last 90 day Lupron shot was May 18, by October T had returned to. 135 and by February this year 482. PSA has stayed at undetectable, next labs are in January.

I have no illusions that I am “cured.” Rather, I am in an extended progression free survival period. When it comes back my medical team and I have decision point about imaging and then based on clinical data we will determine treatment.

It does seem that advanced PCa requires systemic treatment. You have options and decisions to make and that is good news, others have said radiation is possible, you can go on ADT, you can add either taxotere or arbitrone such as Zytiga.

What has helped me is coming to acceptance that at this point medicine cannot cure my PCa but it can treat my PCa as a chronic disease. So, I look at treatment in 3-5 year windows, will this work...then when it comes back there will be new treatment choices.

Kevin

Vany4 profile image
Vany4 in reply to Hawk56

Wow, I’m glad you’re doing so well. How was the chemo at Mayo? As in, how tolerable? My husband really is adverse to this at the moment.

Hawk56 profile image
Hawk56 in reply to Vany4

I did the chemotherapy here in Kansas City, only went back to Mayo for C11 Choline scans and quick consults.

I “tolerated” the taxotere reasonably well. I did lose my hair but it bothered me more than my family and friends and it cane back.

The anti nausea drugs that are part of the pre-infusion worked well.

My blood counts would typically crash in the first 5-7 days but then come back. I never had to take the shots for low WBCs or RBCs.

I did not have any health issues requiring a trip to the ER.

The three main side affects for me were:

Hair loss-not an issue

Chemo mouth - my wife would ask what I wanted for a meal and I would smoke and say it doesn’t matter but there was a psychological boost to eating my favorite meals.

Fatigue, oh yeah. I still exercised, swam, rode my bike, played basketball, hiked in the mountains, lifted weights. At times it was comical trying to exercise through the fatigue but I have no doubt it helped mitigate the side affects. One day I went on a long bike ride, about 20 miles, at about the 16 mile point on the way back I stopped to rest, laid the bike down and sat beside it. A young woman on her bike stopped and asked if I needed help! I said “do I look that bad!?” I thanked her, finished my Gatorade and pedaled the last four miles home!

I did travel, once to watch my daughter play in her team’s conference basketball tournament in Las Vegas after the 3rd infusion, to her graduation after the 5th infusion and one business trip shortly after the sixth infusion.

I was fortunate to be flexible at work and in the first 3-5 days after an infusion I could work from home or had enough sick leave if I needed it.

I will say that I was in good physical shape going in, no other health issues. That may have been a factor in navigating the chemotherapy.

So, what helped me?

Starting physically fit.

Starting healthy

Maintaining an exercise routine

Listening to my body, when it was time to rest...

Maintaining my normal life, travel, getting out with friends, my wife...

Attitude

Kevin

Vany4 profile image
Vany4 in reply to Hawk56

Nice to hear you were able to continue exercise and pushed through it.

Cmdrdata profile image
Cmdrdata

Has he had a genetic test to see if he’s BRACA1/2 positive? If positive, I’d suggest for him to look into PARP inhibitors trial such as olaparib. Since he has positive lymph node met then a biopsy of the met to determine mutation would be beneficial. Personally, treating just the met with radiation is “whack-a-mole” and does not address those still active but not yet detectable. My ONC (now RIP) is a believer to hit it hard early when one is still relatively healthy and can take the SEs of chemo cocktail to chase those bastards not yet detectable by scans.

Vany4 profile image
Vany4 in reply to Cmdrdata

I will ask about that, he hasn’t had it yet.

MateoBeach profile image
MateoBeach

I am in a similar situation and have been sorting out the same issues. I have oligomatastatic disease to pelvic lymph nodes diagnosed on PSMA scan at UCLA a few months ago.

I consulted with two Radiation oncologists in the USA and with Nat Lenzo of Theranostics Australia (aka GenesisCare) with much experience and a researcher in Lu-PSMA treatment.

My nodes were outside of my original prostate bed radiation field and all 3 consultants suggested IMRT to the pelvic node fields with boost to the two weakly PSMA positive nodes. I started on ADT just before the start of the radiation as short-term ADT has been shown to enhance the effects of the radiation significantly. 6 months of ADT are definitely helpful and perhaps up to 18 months. However, it has been shown that these months of ADT as adjuvant to RT need not be continuous, that intermittent ADT seems to be as good.

Here are the considerations that I think are most relevant to your husband's situation.

1) He has PSMA positive node mets, waiting to repeat a scan will not change that.

2) We can presume that there is a high probability that both he and I also have additional microscopic mets that probably express some PSMA. But there is not enough tissue mass in these sites to light up on the Ga-PSMA PET scan.

3) Lu-PSMA treatment appears to work better in earlier and low volume disease rather than in later high-volume disease. And nodes respond better than bone mets. There is no reason not to presume that Lu-PSMA treatment may have some beneficial impact on these micro-metastasis. Dr. Lenzo has some personal experience in treating such patients with favorable results. So he suggests this would be a reasonable choice for me - Weighing the uncertainties since this is not yet proven in clinical trials, but he has not seen any significant increase in adverse effects from Lu-PSMA treatment in such cases. (So I have therefore decided to proceed with treatment(s) for myself.

4) In patients that are still hormonally sensitive, adding short term ADT before Lu-PSMA treatment decreases PSMA expression in the majority of patients so is not advised prior to treatment. For castrate resistant patients already on ADT it actually enhances PSMA expression. And for them the addition of enzalutamide may increase expression further.

So if your husband is still hormone sensitive (as am I), then being off of ADT leading up to treatment would be preferred. For this reason I am interrupting my adjuvant ADT 6 weeks after completing RT. I will let my testosterone return to non-castrate levels and then go for my Lu-PSMA treatment in Australia, probably in February.

5) Since Lutetium kills cancer cells by the mechanisms of radiation treatment, there may be some benefit in going onto short or intermediate term ADT after the treatment(s). I will be resuming my short term intermittent ADT regimen after my own treatment. (I use a combination of Firmagon and then maintaining it with Estradiol Patches. Much more acceptable side effects for me!) I will consult with Dr. Lenzo and my MO further regarding the timing and extent of ADT after LU treatments.

Given all of this I would suggest that you perhaps consult with Theranostics Australia. They will want to have a copy of the CD (raw data) of your Ga-PSMA PET scan and your most recent lab work, pathology and a note of referral from your MO. Then they will arrange a Skype consult with Dr. Lenzo or another knowledgable associate.

I would suggest that you consider not starting an ADT regimen de novo if you might be considering going there soon for Lu-PSMA treatment. This should be decided promptly in my opinion, since your husband would probably otherwise be strongly advised to start ADT if these considerations were not applicable.

Theranostics Australia is very friendly and very knowledgable and experienced. Treatment there is less expensive than in Germany and they do not require hospitalization, just self monitored isolation in his hotel room for a few days before flying home.

Vany4 profile image
Vany4 in reply to MateoBeach

Thank you for this information! I will contact them.

I am not sure his oncologist will give a referral, he seems to be not enamored with LU 177, but I will try without a referral at first.

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

To Vany4, this is the last thing you want to read but I have to: Would you be kind enough to tell us you dear husband's: Age, Location, Gleason score, Treatment center(s), Doctor's name(s). All info is voluntary but it helps us help you and helps us too. Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/11/2019 7:49 PM EST

Vany4 profile image
Vany4 in reply to j-o-h-n

He’s 71, we live in Virginia but getting treated at Sloan Kettering, Gleason 4+3, tertiary 5.

j-o-h-n profile image
j-o-h-n in reply to Vany4

Thank you for your response.... I also am being treated at Sloan.... Dr. Michael Morris, The Kimmel Center, 68th Street (near First Avenue) in Manhattan...

You may want to add your response to your home page under your User ID for your and for the members use.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/16/2019 1:04 PM EST

bostonmac322 profile image
bostonmac322

Your husbands disease sounds similar to what I have experienced. I was diagnosed in 2009 and underwent brachytherapy and had a reoccurrence in 2013 and underwent extensive iliac lymph node dissection in 2014 (46nodes) then undetectable PSA for 1 1/2 years then did a year of ADT on a clinical trial another year of no PSA. In 2017 I underwent additional lymph node dissection retroperitoneal (26 more ) then had disease progression to supra clavicular nodes and had Cyber knife radiation. I am now on intermittent Lupron treatment. Completed monthly treatments for a year with an undetectable PSA. after six months of no treatment I will start another year of treatment as my PSA is rising. My surgeries were done robotically and were successful with relatively easy recovery and provided several years of no other therapy.

I think the idea of an additional PSMA study and then exploring dissection and or Cyberknife radiation might be viable options

Vany4 profile image
Vany4 in reply to bostonmac322

This is interesting. I will ask about it.

Vany4 profile image
Vany4

Well we met with my husband’s oncologist (this is at Sloan Kettering) and he does not even want to put him on ADT until his psa is over 3.0! He wants us to come back in 3 months and do another psa reading and full body mri and standard CT! He also kind of poo-pooed LU 177.

The radiation onco there also wants to wait until his psa is 4 or 5 to repeat the psma scan, saying he will only consider sbrt if what is found is outside where he radiated before. Of course what showed up on the last scan was within the area radiated.

So, all in all, we are basically nowhere right now, at least with Sloan, just waiting. The only good thing is we have some time to work on other options.

jdm3 profile image
jdm3

Thanks for the update. Time to consider other options is good .... as are second opinions.

Good luck and let us know how it goes. Lots of guys here in similar situations and making similar decisions.

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