PROACTIVE

[nobaday]

Diagnosed Nov 2017. Bone Mets to spine, neck and pelvis. Surgery on spine to remove T9 tumour Mov 17 to release spine compression.mass followed by 7 Gys radiation T9 to T5. I have been on Zytiga for 18 months. PSA UNDETECTABLE at 0.01.

Had growth in neck at C3 which grew from 5mm to 20mm over 6 months. Recently hit that with 35 Gys of stereotactic radiation. No more intermittent pains in neck.

I want to keep on Zytiga as long as possible. Switched from prednisone to dexamethasone last month to give my body a change of drug. I am young ( relatively!) and healthy ( relatively!). I play soccer, ski and hike.

Could I do one of the following? With the hope of remaining stable longer.

1. I like the idea of going privately for LU177 or Ac225 ( not qualify for VISION as PDA <2 and chemo naive). This technique is very directed.

But with PSA <2 could it still hit the met sites. I realize a PSMA is a prerequisite but will it show anything?

2. Have my prostate removed as this is still primary tumour and procedure is common.

3. Stereotactically radiate spine and pelvic tumours even though currently stable. Radiate prostate bed.

Any thoughts and comments appreciated!!

[tango65]

If a Ga 68 PSMA PET/CT or 18F DCFPyl PET/CT shows that you have metastases (improbable with a PSA of 0.01) you could try to get Lu 177 PSMA treatment in Europe or Australia. You could continue with Zytiga and wait until it stops working. When the PSA is around 1 you could get a PET/CT and if there are metastases consider to get the Lu 177 PSMA treatment.

Treatment of the prostate with radiation could be considered if you had less than 5 metastases when you were diagnosed.

[Tall_Allen]

1. PSMA-directed treatments depend on how PSMA-avid your mets are. You might consider Xofigo as well.

2. It sounds like you had too many bone mets for prostate treatment to be of any use:

pcnrv.blogspot.com/2018/09/...

3. There is no evidence that radiation of mets has any benefit, especially considering your multiple mets.

[nobaday in reply to Tall_Allen]

Thanks for responding. I seem to be in a similar position to Gyancey, same age, bone Mets, on Zytiga.

BUT HE HAS DONE 2 rounds of Zytiga at Bad Birka despite having basically undetectable PSA. If I had not seen his posts I would be waiting until my PSA goes to 2 or so. But the Li177 appears to be benefiting Gyancey. Can u comment. Are his none Mets gone or just hibernating as smaller ones not detectable on the PSMA SCAN.

Could u comment?

Thanks, I like reading your responses because u use data to make your points!

U did mention Xofiga, radium 223. When I asked my MO, he said the Mets like the one I had growing at C3 and originally T9 had a lot of soft tissue growth so radium223 would be of no use. I’m too early for VISION, and as I suspected I u gave me the data showing no benefit from more radiation with a bunch of bone Mets, and no data for prostate removal now that I have bone Mets that have spread from prostate.

But Gyancey, in a similar position to me is off doing early Lu177.

Could u comment?

Could u comment?

[gyancey in reply to nobaday]

Hi there Nobaday

Just had my second LU-177 treatment at Bad Berka a few weeks ago. Treatment was effective with bone and lymph node Mets gone according to post treatment scans. I am scheduled to go back in December to have scans done and if things look good I won't get the third treatment and I will head home. If it looks bad I stay and have treatment. The prostate tumor burden has been decreased by about 30% so the doc has suggested E-beam radiation.

As it relates to early treatment with LU-177 early in the treatment cycle the thinking out of Bad Berka is it is more effective pre chemo. I will leave it to others on this site who are better informed than I to help out on the more technical aspects of your questions.

As I understand the progression of this disease we are on ADT therapy until it fails. Then some combination of Chemo/radiation until that fails and then your off to hospice. To me this is unacceptable as I am 55 years old with a lot to live for. That's why I have chosen to get LU-177 early. Don't really know if it will keep me alive longer but the risk/reward ratio seems favorable.

Hope this helps and good luck!!

[nobaday in reply to gyancey]

Thanks Gyancey

I’m now 57 and playing soccer, skiing and still do stuff with my 2 ‘boys’ 26 and 29 . I want QOL and so far I am pretty happy with my choices of treatment and level of activity 18 months in and <0.008 PSA.

QUESTIONS FOR GYANCEY and anyone else who has input:

1. Your bone Mets are ‘gone’ or just shrunk to the point where scans can’t see those few prostate cancer cells in hibernation?

2. To confirm u are still on 3 month ADT shots along with Zytiga right, and u will stay on this regimen no matter what the scans say and your PSA stays at around 0.1?

3.If your prostate is not clear WHY NOT REMOVE IT??? This is what I suggested for myself as one option but for you heading into the low burden zone, doesn’t it make it a no brainer option? Or are potential side effects of this not as attractive as trying to clear the prostate with Lu177, presumably at a much higher private cost?

4.I assume everything (bone Mets, lymph node and prostate) all lit up on your PSMA scan prior to your first Lu177 despite PSA OF 0.01. Do u think u are more PSMA avid than others. The comments I get is not much will be seen on a PSMA scan with my PSA at 0.01. I do not have a local PSMA scanning facility here in Vancouver. Canada but could easily get one done in LA which I believe is the closest PSMA scanning facility to Vancouver.

5. Did Dr Baum talk to you about Ac225 at all. If your next scan lights up anywhere, is Ac226 or combo Lu177/ Ac225 an option?

6. Do you know of anyone else doing Lu177 or Ac225 early in treatment cycle with very low PSA eg Lots of Germans who are closer to a Bad Birka than we are?!

Thanks and GOID LUCK!!!

[gyancey in reply to nobaday]

I am by no means well versed in this stuff but I'll give you my somewhat uniformed opinion.

1. Don't know but I assume they are not gone just undetectable.

2. yes I get a shot of Lupron every three months and Zytiga daily. As much as I would LOVE to be off ADT therapy I assume I will be on it until the end.

3. Good question. I have been told it's too late given how aggressive the cancer is.

4. Yes my PSMA scan showed clear spread to spine, ribs and pelvic lymph nodes.

My second PSMA scan done in Bad Berka showed some mets had resolved but

new mets had formed. This despite low PSA. I had my first scan done at UCLA but

UCSF might be an option. Save you an hour of travel. $2,700 out of pocket. This

is starting to get expensive...

5. Dr. Baum did not discuss Ac225 or combo LU-177/Ac225. While I was there for

my first treatment I met a fellow from Canada who was receiving Ac225

treatment. He seemed to tolerate it well.

6. No I do not know anyone who has gotten LU-177 early but I do know that at

Bad Berka they have treated quite a few patients in our situation.

Good luck Nobaday. Keep me posted.

Gyancey

[Grumpyswife in reply to gyancey]

Hi Gysncey, I am trying to follow this discussion. To clarify, your PSA was low and yet your PSMA scan showed a lot and was useful in deciding to go forward with Lutetium treatment in Germany? Is that correct? Thx Mary

[gyancey in reply to Grumpyswife]

Hi Mary,

Yes you are correct, My PSA was low but PSMA scan showed spread as described in my response to Nobaday. Dr. Baum feels that my PSA levels are not an indication of the Tumor burden. I got the impression that he feels mine is a bit of an unusual case.

Are you and your husband considering LU-177 treatment?

Best,

Gib

[Grumpyswife in reply to gyancey]

We have been talking about Lutetium since I heard of it here. We are planning for when Xtandi fails but neither of us wants to travel to Europe again. He hasn't had chemo yet so isn't qualified for the US trials. His doc may want him to try Zytiga first. We will see the doc soon but he is standard of care type.

[nobaday in reply to Grumpyswife]

My MO is SOC type... he has to be in Vancouver Canada... he cannot prescribe outside of SOC! OR he will lose his job!!

But when I say to him no to chemo, get another scan to check my other Mets, do stereotactic radiation SOC instead he lets me do it. He also says when I discuss Lu277 ( which can be done thru Vancouver... if u do chemo first and have a PSA of 2 or more thru VIDION trial) THE ONLY PROBLEM IS I DO NOT QUALIFY LOL!! he says ‘ go consult with Germany , I have no data to support/ not support and it’s not far enough along to give any opinions!!’

So to you I say it’s targeted radiation that is showing SOME success in SOME people and GREAT success in a FEW people.

Gyancey is doing it early in treatment and with 0.01 PSA. It’s on my hot list as the technology and minimal side age acts look SOUND, and MANY treatm Mets have been done BUT ITS STILL IN THE RESEARCH/ CLINICAL TRIP/ EXPERIMENTAL. setting. However at $15k a shot, and likely 2 or 3 shots I am looking for a cheaper option first eg. Prostate bed radiation or wait till Zytiga fails, or find somewhere where it’s not a big money making business!!

I also say to you, advocate for yourself/ hubby and choose a treatment that fits with your situation and willingness to travel/ try unproven treatments. Question your MO and do not be satisfied with SOC if u want to try something else.

GOOD LUCK!!!

[GP24 in reply to gyancey]

Dr. Baum also wrote in my report that my PSA levels are not an indication of the tumor burden. However, I am sure in my case they are. I thought he sees so many patients with a high tumor burden and low PSA levels that he is biased.

[nobaday in reply to gyancey]

Great replies thanks! GP24 responded to my PROACTIVE message saying to debulk the prostate with my suggested option of bed radiation instead of Lu177 or RP and it’s also a recommended treatment. When do you get a scan again to see second Lu177 results?

Also interesting but obviously disappointing to see new Mets appear. Do u know approv size of bone Mets that cleared, or approx size of new Mets, or detection limit of PSMA scans eg. How BIG are they in mm?

Note I had a tumour at C3 growing in my neck whilst badly calmly undetectable on Zytiga and Zoladex 3 month injections. Presumably this makes a good reason why it could be pointless to go through an RP?!

Was your second round of Lu177 at Bad Birka cheaper than the first?!

From a cost perspective I’m thinking it might be worthwhile contacting South Africa?

[gyancey in reply to nobaday]

I'll get a PSMA scan in December. I don't know the size of the mets. My second trip was a little cheaper. South Africa could be cheaper but that is quite a road trip. I found that my second round of LU-177 hit me a little harder from a fatigue standpoint and the trip home was a bit rough. Maybe Australia?

[cesanon]

Psma scan needs either 2 psa or aggressive prostate cancer. What exactly is your psa?

I would do both a psma scan and an Auximin scan at the same time, right away.

Use sbrt radiation treatment with the most recent equipment on anything you find in dangerous locations.

Check out tall Allen's blog. It has lots of useful details. I would study it. Then come back here and ask more questions.

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

As per your request: "stop reading my posts please. Thanks" I did not read your post.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/10/2019 10:12 PM DST

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

John who is this post directed to. Why don’t u private message Cesanon if directed at him. Also looks like a reply from Nalakrats to me has diosappeared.

Always good humour!!

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

But He won't know that I'm not reading them.... He asked me not to read them....

Thanks for your concern....Nat to you disappeared? Then how do you know he sent one? MY LOGIC.... REGARDS.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/12/2019 10:19 PM DST

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

JOHN

I remember his response although not entirely. Or maybe I was dreaming!! I am only 57 and to my knowledge don’t have brain fog!

I have sent Nalakrats a follow up message!

Thanks!