Need opinion on Hormone therapy FIRMAGON and Pet scan

[Karmaji]

I have CAT SCAN and Scintiegraphy bone scan and biopsy. As of now T3b

My uro wants to start hormone FIRMAGON straight way coupled with IMRT later on

but URO cancerologist recommends choline Pet scan before...

Uro is bit confused to contradict cancerologist..

RO opinion is half way..

Problem is Pet Scan may take 3 or 4 weeks...

Need opinion from Forum family...

Should I start right now with FIRMAGON...

Thanks

I am in south France Marseille area....

[JuanVV]

Only can give you my husband's experience with Firmagon, I am no expert. He took Frirmagon beginning of 2018 and it went down to 9 from 44 in just the first month with not too many side effects, after a year it started going up again. I understand from what I've been reading that it stops working for some after normally 2 years because they become castrate resistant. Now he's on Xtandi which isn't so effective, for the moment at least. Hope this helps a little. Firmagon according to the papers I read has less effect on the heart than other ADTs.

[Karmaji in reply to JuanVV]

Many thanks....

[GP24]

Prostate cancer is growing slowly so 4 weeks will not make a significant difference. However, I would not make a Cholin PET but a PSMA PET:

sciencedirect.com/science/a...

sciencedirect.com/science/a...

If you cannot get it in France, you can drive to Milan to get it done.

It is very likely with your PSA value of 30 that there are affectected lymph nodes in the pelvis. If these show up with the PET/CT, the radiation should include the pelvis and not just radiate the prostate.

What is your Gleason Score?

[Karmaji in reply to GP24]

agree...

Gleason I will know on 2 july... biopsy done on 26 june

I had problem with my URO who knows every thing... and ONCO lady of top Institute who wants Choline before Radio protocole and sur RO cant take a position between the lady and his friend URO....

Difficult to handle Ego temples

[Tall_Allen]

What is the purpose of the PET scan? What decision depends on it?

[Karmaji in reply to Tall_Allen]

decision of Radiotherapy.... not of Hormone therapy as I understand talking to Onco of Prostate... a pretty lady

[Tall_Allen in reply to Karmaji]

So you are looking for distant metastases, in which case you would have no radiotherapy, right?

[Karmaji in reply to Tall_Allen]

Right now there is no distant metastases

from bone scan and cat scan.....

Uro wanted to start hormone along with radiotherapy later on..for prostate and pelvis etc...

BUT onco wants to verify...further thru choline..... WHICH Uro did not appreciate

.....and he did not like I saw Onco...

I dont know if there is something on choline what will be protocol..

All onco says before any radio. THERAPY do choline pet scan...as a precaution...

Thanks T ALLEN

[Tall_Allen in reply to Karmaji]

The precaution is that - if they find any distant mets using the choline PET scan - they will avoid radiotherapy.

[Karmaji in reply to Tall_Allen]

Onco wanted to be sure

There is no met with bone scan and CAT...

URO did not like these ONCO professors giving advice..

Uro had all set up ADT ..then IMRT with his friend...

So I created mess...not used to these petty egos..URO even refused to talk to ONCO....

Just a big chinese Budha Laugh..

[Dachshundlove]

Hi Karmaji:

My husband had the loading (double) dose of firmagon on May 16th and then a psma pet on July 24th. As long as psa remains over .2, your pet scan should be considered conclusive if it’s a psma.

If it’s a choline I think one needs a psa over 2.

If you feel like you want to start hormone therapy, I would start. You will have to get a psa prior to scan to make sure psa is high enough.

Best of luck to you on your journey.

[Karmaji in reply to Dachshundlove]

yes... Onco lady thinks do Choline scan before deciding for Radiotherapy....

Mine PSA is 30 I took 6 weeks ago...

[Karmaji in reply to Dachshundlove]

Mine is 30

[Karmaji]

very strange ego filled world of docs..... They get upset with second opinion....

I thought they were devoted scientists...but no....they live in their prisons and they stink of money smell.....

Moreover.... Cancer cell is a terrorist living in my house and he eats same food....

Then Docs in order to kill the terrorists they kill the good citizens too....

To starve prostate cancer cell they starve good cells....

What a bankrupt cancer therapy... a shame to all cancer researchers.....

I would like to know how to stop loving living cell from becoming a terrorist.....

These guys need a new look.... from base up.....

Let us not prolong life but respect dignity of life.....

We all die... a year more or less.... just a number....

But live fully not living dead.....

[Dachshundlove]

It also makes sense to have a pet scan to plan for radiotherapy. So I agree that one waits for pet before starting radiotherapy.

[Break60]

If you start ADT it will defeat the purpose of the scan . You should get PSMA ga 68 ctpet when Psa is near 2.0

[RonnyBaby]

Perhaps my situation, although different than yours, might offer an opinion that could start further dialogue with your team.

I was diagnosed as T3B about 2 years ago. My G score was 9, with lymph node involvement - no distant mets.

The treatment choice was aggressive. Hit it hard, early.

The result was ADT (casodex, followed by Lupron for 16 months) and EBRT - 79 Gys to

the prostate and about 55 for the nodes (pelvic area).

My PSA went to <0.02 for 4 consecutive cycles - which allowed me to take an ADT holiday (last shot way July, 2018).

Today, my 'total' testosterone has rebounded to nearly normal range (still climbing) and my PSA sits at 0.03 and slowly climbing - as expected.

It appears that I am doing well and I am optimistic that I will be around to play with that silly little white ball we love to swear at.

Get a second opinion and GO for it !

[Karmaji in reply to RonnyBaby]

Thanks...

Second opinion creates real conflict in small world...

I trust Uro he said I am free for second opion. SO consulted Onco...Onco agrees to FIRMAGON. based on bone scan and CAT..

But she suggested Coline pet scan. Which would guide RO. and Uro got pissed up.

..strange egos to handle..URO say that he wanted to go fast...a local guy....and Onco in team of top prostate group says otherwise...

Well amusing even if it involves ...health...