Islandboy, I traveled for chemo as well. Not the easiest way to do it, I know but with this beast you need to do what you've got to do. Exercising and eating better has worked to help me feel better....
Steve, Just wanted to also add my "go get 'em!". I'm glad to read that you've been approved for the second round of treatment. Worked well the first time. Here's hoping it works even better the...
I had the Pylarify PSMA scan at the Cleveland Clinic several months ago. Procedure was similar to other scans I've had. They did give me the IV infusion first and then sent me to the waiting room for...
Stephen S and azroadrunner, Ah, you guys are no fun with that high-falutin, fancy, portable urinal. When you have that you miss the look on your SO's face when they see that the container they just...
As others have said, one of the most difficult parts of initial treatment is figuring out which one you want to go with. The best advice is what it sounds like you did - research the hell out of it,...
Thank you Cyclone, One thing I forgot to mention was the hot flashes. I do get them but recall that they seemed to lessen in frequency the longer I was on ADT the first time. Now that I'm back on ADT...
Melanie, I had whole pelvis radiation the first time around in 2017. I was found to have cancer again in pelvic lymph nodes so in the area already covered in the whole pelvis radiation. I assumed...
My first experience was with Lupron, and later, Zytiga starting in 2016 at initial diagnosis. Like many, I was scared $$$less when my doctor indicated that I would be getting my first Lupron shot. I...
I'm recently in a similar situation as well. I'm in the middle of getting SBRT radiation to the mets found on the PSMA scan and back on ADT for most likely 12-18 months....
Apparently LU-177 has been FDA approved today. I saw the announcement on another forum I follow and wanted to share the news. It is certainly wonderful news....
I'm the proud uncle of two nieces who got matched last Friday. Definitely an exciting, but nerve-wracking, day for them. One is going to be a resident at Johns Hopkins and the other at the Cleveland...
Congratulations! I am in the middle of SBRT for oligometastatic treatment of mets found via my PSMA Pet scan. My insurance company denied the SBRT four times but my RO continued to appeal until the...
Thank you, Cyclone. I actually start my first dose of SBRT tomorrow. It was a long road getting it approved by my insurance company but my RO jumped through the hoops and appealed with even more...
I was recently prescribed Lupron plus Erleada. Got the Lupron injection on January 25th but just took my first Erleada dose this morning. It took awhile for the Erleada to get approved by insurance...
GeetarMan, Probably too early to tell since it seems to take a while for the Lupron effects to diminish, but it will be interesting to hear if you actually feel better with Zytiga only than with...
Just another update. I met with my CC RO today and he told me that he is 100% on board with SBRT to each of the mets found with the PMSA scan. On the PSMA scan topic he, like my other doctors,...
Hey JR, great to hear from you. Thank you very much, I appreciate it. I hope things are going well for you and you have been able to travel a bit despite the craziness going on in the world/travel...
I'll be the first to welcome you to the forum Bosnt. Others that may have had similar situations will be along to discuss your situation and offer you advice. Unfortunately, my situation was quite...
Thank for the support guys. More encouraging news, Dr. Lam responded to my email and indicated that Erleada was perfectly fine to use instead of Zytiga so the ADT part is settled. Also, my CC RO's...
Update - I had my appointment with the Cleveland Clinic MO today. I was pleasantly surprised to find that CC MO recommendations were nearly the same as Dr. Lam's. The only difference is that instead...
Thank you, Steve. I was excited to read your update in the other thread. Success with new treatments brings hope to all of us. Keep up the good work! I actually did ask Dr. Lam about the Orgovyx...
Steve, This is a wonderful update! I was very glad to read of the good response both for your sake and possibly mine in the future. I'm sending serious good vibes your way that the PSA continues to...
mattam - Yes, certainly new information to me regarding the Lupron/Zytiga part. Michael_T - Yes, when I spoke through email with my local (Cleveland Clinic) RO following the scan results, he did a...
I had a short-term stint (5 months) with Zytiga several years ago on the tail end of my two-year initial treatment ADT. I was adding to Lupron that I'd been on for a year and half at that point so I...
So, I had my virtual appointment today and learned some interesting things from Dr. Lam. He indicated that if this were even a year or so ago, prior to wider-spread PSMA scan availability, my spots...
Thank you for the replies guys. I appreciate the support. I meet with Dr. Lam on Wednesday and a Cleveland Clinic oncologist on January 11th. I'm looking to forward to hearing what their thoughts...
I haven't met with a Cleveland Clinic medical oncologist yet. I talked to my CC Radiation Oncologist today though and he is recommending and setting me up with a consultation with a CC medical...
Thank you. Yes, a bit of bad timing on finding this out for sure but I guess there is really never a great time. I did have radiation to the entire pelvic area the first time. Interestingly, when I...
Hello All, My updates for the last four years have been happily pretty boring. Undetectable PSA and living life. Unfortunately, this past summer my PSA started to rise. We watched and checked each...
Steve, Thank you for sharing this detailed update. It is really helpful for all of us to get information on what treatments are being offered out there especially when they are new like the Lupron...
Ah! Thank you. This brought back some memories of how nice it was to finally have the cath out. Unfortunately, mine didn't practically fall out as some others enjoyed by required some good tugs. It...
reclineaholic, Best wishes to your dad from me as well. I am glad to read that my chemo diary was helpful....
Great news gedman! Agree with you on the PSA test guidelines. We've seen plenty of guys here with PCa before the "magic" age of 50 and even at 50 some doctors seem to shy away from PSA tests. Like...
Thank you Cyclone. Reading others' journey was very helpful to me as I started the chemo process and hopefully others that are getting ready to start will be helped in the same way....
Also following this thread for updates and very hopeful that LU-177 is found to be a treatment that can be added to standard treatment protocols in the USA. I really hope it is working for Fairwind...
Just want +1 Stephen S comment. Thank you for all you do in assisting us Cyclone!...
Excellent news!...
Hello NiRo, Sorry to hear about your father's diagnosis but glad that you found the forum and are doing the research on how to go about treatment. I was diagnosed in 2016 with G9 and a positive lymph...
Wayne, I included RP in treatment (as part of a kitchen sink approach) so will let the brachy guys give advice on that. However, as a G9 with a positive pelvic lymph node at diagnosis, I wanted to...
Thank you again everyone, I appreciate it! Those themselves or SO going through this now, you have my best wishes as well. I hope to still be giving hope to others with 30 more years of updates!...
Thank you Mattam!...
Grandpamarv, I hesitate to throw more at you that you may not need but I see that you have contacted Dr. Sartor so possibly expanding your geographical search for more information for treatment...
Cyclone and Michael_T, Thank you and good to hear from you. Both of you had an important part in helping me through the darker days for certain. Here in Cleveland, we have learned that we need to be...
Hello All, I wanted to check in with an update on my status which will, hopefully, provide some encouragement for those recently encountering an advanced/G9 diagnosis. I was diagnosed in the summer...
I actually lost weight for my first year on Lupron (but I also changed my diet and increased exercise when diagnosed). However, during my second year Zytiga was added and I went through chemo. With...
Wonderful news! Always great to hear things are going well for members here. Keep it up!...
Farz, I’m very sorry to read this. Rest assured, your father knew how much he was loved and there really is no better gift we can give to another human being then our love. Take care of yourself and...
ADT, Surgery, Radiation, and chemo as initial treatment for me. Some said I was "over treating". With gleason 9 and a positive pelvic lymph node on diagnosis at age 50, my feeling was to hit it with...
DaMayer, Sorry to welcome you to the club. I'd bet the vast majority of us here never sought out much help let alone a support group before. I'm a psychologist and have recommended or referred...
Hello Nytngale, My situation was somewhat similar to your husband's. For what it's worth, my positive lymph node was actually identified prior to my surgery and my doctors put me on Lupron...