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
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Then why are they still giving an outdated, less sensitive PET scan?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.
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.
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.
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.
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..
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
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
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.
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.
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.
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.
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.
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.
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!!!!
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.
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....
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.
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...
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....
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
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.
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
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
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