New choline PET scan after being off ... - Advanced Prostate...

Advanced Prostate Cancer

20,782 members25,888 posts

New choline PET scan after being off LU-177 PSMA since early May.

Jackpine profile image
44 Replies

Went to the Mayo yesterday for a 3 month checkup after finishing the Vision trial in early May. Prior to the study PSA was 110 and doubling every three weeks with bone Mets from head to my feet, after 5 cycles of LU177 my PSA bottomed out at 0.4. Yesterday my PSA has risen to 4.6 and my PET scan showed a large lesion on my 5th left rib and two other smaller spots. New plan is to hit all the spots with SBRT next week to see if we can put the genie back in the bottle.

I look at this journey as a marathon and I will keep on running as long as humanly possible. I refuse to let this thing ruin my golf game this year!

Stay strong and fight on!!

Written by
Jackpine profile image
Jackpine
To view profiles and participate in discussions please or .
Read more about...
44 Replies
Tall_Allen profile image
Tall_Allen

I think Mayo is desperate to make their money back on c-11 choline

andrew61 profile image
andrew61 in reply to Tall_Allen

I don’t think that’s the culture at Mayo.

Tall_Allen profile image
Tall_Allen in reply to andrew61

Then why are they still giving an outdated, less sensitive PET scan? C-11 required an enormous investment. C-11 has a half-life of only 20 minutes, so it has to be produced in on on-site cyclotron and the choline has has to be quickly synthesized with covalent bonds - it's very expensive.

Axumin, on the other hand, uses F-18, which has a half-life of 110 minutes. The synthesis of FACBC (fluciclovine) is a simple fluorination of an ester precurser that can be prepared in advance. It doesn't have to be made on-site, is easier to produce, is much more sensitive and specific. The only reason to give C-11 Choline rather than Axumin is to recover their investment.

Survivor1965 profile image
Survivor1965 in reply to Tall_Allen

Interesting that if C-11 is such a boon at Rochester Mayo then I wonder why did they go thru the investment and start it up at Phoenix Mayo also?

Tall_Allen profile image
Tall_Allen in reply to Survivor1965

They own the patent.

cigafred profile image
cigafred in reply to Tall_Allen

I agree with The Tall One. When I discussed with Kwon et al my lymph node mets, he said first must do the C-11 scan. I said "but if it shows the same or similar as the scan I sent you from the Radboud nano-iron MRI what could you do?" and he said first must do his scan.

Tall_Allen profile image
Tall_Allen in reply to cigafred

I wish the Radboud scan were more widely available. If it's true that pelvic lymph nodes are the principal site of recurrence, maybe Combidex will get a second look.

cigafred profile image
cigafred in reply to Tall_Allen

During the infusion at Radboud I had a long talk with Dr./Professor Barentz, who explained what went wrong in the original Combidex application. Some went over my head, some I forget, I do remember there was no radiologist involved in the initial application (!). But now that Radboud has taken ownership from the pharma company another application is (or was when we talked in 2014) most unlikely.

tango65 profile image
tango65

You should try to get a PSMA PET/CT. Ga68 PSMA PET/CT has a higher detection rate than 11C Choline PET/CT. There could be more metastases which were missed by the 11 C Choline scan. If they are going to do direct treatment, they need to treat all the metastases which could be visualized using the most sensitive technique available..

ncbi.nlm.nih.gov/pubmed/275...

Jackpine profile image
Jackpine in reply to tango65

Tango fully agree with you. I’ll see where I can have that done in the Twin Cities. Want to try and hit non-detectable for once. Seems like I’ve been chasing that unicorn for 6 years

tango65 profile image
tango65 in reply to Jackpine

Best of luck!

pinejogave profile image
pinejogave

From where I’m sitting you are ahead of the game and very fortunate.

I hope to receive similar results with my last infusion in three weeks.

What medication do you foresee as your next step if it continues to grow?

Jackpine profile image
Jackpine in reply to pinejogave

I think my next one will be Xtandi as I’ve failed on Zytiga.

Hoping for great results for you!!

pinejogave profile image
pinejogave in reply to Jackpine

I failed on Xtandi I think my next will be Zytiga. I lost 15 lbs on Xtandi. I have almost gained the weight back while on the Vision trial. We appear to be traveling similar roads All the best

Jackpine profile image
Jackpine in reply to pinejogave

You as well PineJo.

I can go to lose some pounds I lost 15 Lbs after I stopped the Zytiga and prednisone.

Metungboy profile image
Metungboy in reply to pinejogave

You didn’t fail xtandi, it failed you.

in reply to Jackpine

Couple of new ones out there. Bauer and another that beat Zytiga and xandi. Not sure the other manufacturer but I’m sure others here do.

MateoBeach profile image
MateoBeach in reply to Jackpine

Also check into Erleada (apalutamide) or Nubeqa (darolutamide) as alternatives to enzalutamide, both of which I understand do not cross the blood-brain barrier into the brain.

AlanMeyer profile image
AlanMeyer

It sounds like the Lu-177 helped a lot. I'm glad of that and glad that you have a plan to try to attack the cancer that escaped the treatment.

Thank you for the report, and thank you for participating in the clinical trial. I hope that your participation will help the scientists to better understand the experimental treatment and to keep refining it.

Best of luck for the future.

Alan

cesanon profile image
cesanon

Have you considered bipolar testosterone therapy as your next escalation?

Schwah profile image
Schwah

I’m a golfer too. Does your group give you extra “cancer strokes”? Mine won’t even give me a 2’ putt. Lol. Life with this disease is always best when we are doing what we love and for that time, our cancer doesn’t cross our mind. Bliss.

Schwah

Jackpine profile image
Jackpine in reply to Schwah

Schwah,

My group also cuts me no slack ! I do enjoy the game and it does help me forget this disease and enjoy the time in a beautiful setting with great friends.

Hope your drives are straight and putts few!!

CJ4J profile image
CJ4J

Thanks for taking the time to let us know how you're doing. We all learn so much from each other. I think Xtandi would be a great next option as well. Praying you have the wisdom to know what to do next. One step at a time, one day at a time.

whatsinaname profile image
whatsinaname in reply to CJ4J

Just saw your post, CJ4J.

Could you tell me WHY Xtandi will be a great next option when Zytiga has failed ?? I feel there is a 50-50 chance of Xtandi succeeding or failing.

Thanks much.

CJ4J profile image
CJ4J in reply to whatsinaname

Well, I can only speak from my husbands experience. He started Xtandi in Decemeber 2018 after failing all other treatments. It was the only drug that started his PSA decline. Provenge, zytiga and chemo didn't lower his PSA. He took Xtandi 1 month before starting Lut-177 and his PSA dropped considerably. Now his PSA is .10.

whatsinaname profile image
whatsinaname in reply to CJ4J

Thanks, CJ4J.

You don't think the fall in his PSA could be because of the Lu-177 ??

CJ4J profile image
CJ4J in reply to whatsinaname

He took Xtandi 1 month before starting Lut-177. PSA had dropped before injection.

whatsinaname profile image
whatsinaname in reply to CJ4J

Then it is clear cut. His PSA fell because of Xtandi not the Lu-177 infusion.

Thanks and all the very best to your husband.

pilot52 profile image
pilot52

Amen to that brother...was playing to a 8 and this is my second Stage 4 battle since late 2012.....Have been flying until I hope temporary loss of medical (I hope)) Last 4 years been playing to a 15 and struggling . Had a couple of pros look at me and always can quick fix..I finally tracked down my original guy because the other day I was short of opening a vein and just bleeding out..49 front 39 back....He looked at me and said....Doc you have really let them _ _ ck you up....took about 20 min....We went and played two rounds....the golf god smiles upon my wingless body (grounded) 79....we always look back where we left some strokes on the course....However,,I have always had a great attitude on the course which gets better...Playing a course in North Carolina ( Wade Hampton) once my close friend who invites me remarked after I blew a sub 80 round...Wow you have always had a positive attitude. I said shit this is just golf not the C. Monster .....Great Read Golf is not a Game of Perfect.........I have flown since I was a pup but did not start into Jet platforms until I was 62......My whole reason for this rant is life can be good if we do not focus on this crap....sure we think about it but hey if it really gets you down go buy some new clubs!!!!

Blue Skies. a Grounded Sky King...

Jackpine profile image
Jackpine in reply to pilot52

Pilot,

I hope you are not grounded long. While I’m not a pilot I’ve flown over 5 million miles for my work. I understand on the golf as well I used to play to a 12 but after surgery, chemo, radiation and weight gain thanks to this crap I went to a 20. Back down to a 15 this year but can recount every missed stroke.

Stay strong!

Boywonder56 profile image
Boywonder56 in reply to pilot52

Are you on lupron....just wondering....i am and getting harder to get through 18....but also live in the swamp called houston.....but b4 this stg4 caca...we"d sometimes play 36 in july.....i digress ...bw....

Jackpine profile image
Jackpine in reply to Boywonder56

Boy Wonder,

I am on Lupron and 8 holes is about all I can do as well. I live in Minnesota so not as warm as you. You are right before this disease 36 holes was easy.

pilot52 profile image
pilot52 in reply to Boywonder56

I was at MD Anderson for Proton and played 3 times a week with another couple of guys...was on Lupron then...on Lupron Xtandi now and still jog, lift, and everything else...I fight slight fatigue so I either take a quick 30 or just push through..When I am involved in a activity I fatigue very little...Houston does get a little warm ...I was out there earlier for IMRT for Head and Neck.....that was the ass buster....Here in Georgia it is a pleasant 101 degress and 70% humidity ....Good brewski weather...Keep in mind I have always had a PT routine...which tends to help now.......Blue Skies...

Boywonder56 profile image
Boywonder56 in reply to pilot52

Good to hear....im in construction ....always thought i got good workout....had i known..strength would diminish so ...iwould have started real exercise....good luck and no 3putts....

Survivor1965 profile image
Survivor1965

When I hear “put the genie back in the bottle” makes me think you are seeing Kwon who Used to say that to me. I saw him for 4 years. Did cryoablasion on my rib and spine Mets, worked good. Failed Zytiga now on Lupron and xtandi for 30 months. PSA undetectable

Jackpine profile image
Jackpine in reply to Survivor1965

Lol I do see Dr. Kwon who I think is wonderful and aggressive! I don’t think I heard him use that term but I’ll have to listen next time I see him.

This is a tough disease but time to kick its ass!

Survivor1965 profile image
Survivor1965 in reply to Jackpine

I was so bad with Mets, lymph’s, very aggressive stage 4 Gleason 9 and Euge always knew just what to do for me. Somehow we always beat the disease back to a zero PSA. He used to tell me I was a cockroach, didn’t matter what they threw at me nothing could kill me.

tallguy2 profile image
tallguy2

Appreciate the update. If a new scan shows more Mets and you suspect even more undetected lesions are you considered chemo?

Jackpine profile image
Jackpine in reply to tallguy2

Tall guy,

They’ll hit them with SBRT first and then we’ll monitor closely, A second round of chemo is certainly a possibility.

monte1111 profile image
monte1111

Things seem to be going nicely. Looks like you may put the genie back in the bottle and catch that unicorn all at the same time. Good luck.

georgef16 profile image
georgef16

Yes, yes Jack

Hitting every spot where there is evidence of the beast....you can do it.....I also just had C11 Choline scan....2 spots on pelvic area....just done with 36 trest of proton on soft tissue lesion.....this coming Monday doing SBRT on bone lesion.....u r on the right path....I know others that had the entire body ridden with this thing.....today he is zpSA of zero......good luck

louschu profile image
louschu

I sense some silliness about Pet scans. Need to remember that half the docs still use glucose which is darn near worthless. C11 in 2014 may have saved my life.

PSMA, which I had in 2018, is great but clears thru the kidney which blocks that area.

The dude in Phoenix who pioneered carbon acetate has a detail comparison on the web and put Auxmin last.

The point is all these scans are far better than glucose. If you only see a few spots - shoot them.

My ex doc at Vanderbilt said they have choline capability but don't know how to read the scans or what to do next. AUGH

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

My doctor told me to play 36 holes a day, so I went out and bought a harmonica.

youtube.com/watch?v=x3KEEGK...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/11/2019 10:11 PM DST

Seebs9 profile image
Seebs9

FORE!!!!!

You may also like...

Update after LU 177 PSMA

8 to 4.6. Did 5 fractions of SBRT to the spots, went this week for scans and the treated spots...

Too early after HIFU for PSMA PET/CT Scan?

months ago) for a focal tumor. My recent PSA test is 4.6, not the 0.0 nadir result I had hoped...

PET/PSMA scan results after 3rd LU-177. Should I go ahead with SBRT or complete 4th LU-177?

PSA Marker came down marginally from 0.227 to 0.202 . Results of PET/PSMA scan today compare with...

2nd LU 177 PSMA injection

fatigue the first round. I will not have another PSA test for several weeks but will do scans in...

Any benefits from a Choline C-11 Scan in addition to Pylarify PSMA PET MRI?

scan will be useful in addition to a PSMA PET? My recurrent PSA is low ~0.7. One of my doctors...