I had Gleason 6 in 2014. Had Radiation only. Within months we noticed the PSA had not gone down enough. Started Lupron. Had a biopsy found cancer again...then I Had HIFU... PSA (again) began to rise and...had the newer Axumin Pet scan and found several mets on pelvic bones and several lymph nodes involved(the prostate area showed NOTHING, so the HIFU appeared to work) Then, alas, did Chemo...PSA went down...but then started up...then did Provenge and simultaneously started Xtandi. PSA went down slowly to just under one in a few months on Xtandi, but now it's just bumped back over one (slightly). Latest Axumin pet scan shows shrinkage in all of the mets and lymph nodes...so I'm HOPING the PSA does go down and stays down for a while. It's been a crappy 4 1/2 years of nothing working. Still no pain, just exhausted from all the treatments! Am I the only one in the "fast track" here. I'm trying to keep positive...but it's hard with Lupron & Xtandi weighing my spirits down....
(pic is my dad and me on my 2nd or 3rd birthday)
You and I are traveling the same road. I've burned thru ever treatment available and PSA drops for a bit then starts to rise again. Same time frame to 4yrs
yes, I have noted your journey and I follow your posts...hoping for some new insight on what we can do. I'm 61 now. How old are you? Have you been tested for Lu-Psma? I have a very good insurance, but it's a medicare (disability) HMO, so I can't got to all the bigger fancier named hospitals...I'm with University Of Miami, Sylvester Cancer Center..they are supposed to be good. Did get a second opinion at Moffat Center in Tampa...they concurred with my oncologist here in Miami/Ft. Lauderdale. Trying to figure out if I should change my insurance (and pay a lot of deductibles) to be able to go to the "big name" places....
Hey John. I'm 59. I have Medicare with a supplemental ins. Mostly costs me nothing. I am at sloan in NYC and Dana Farber in Boston. I havent been tested for psma yet. Sloan may have a trial using Lu in a month or two.
good luck. It's great you're so close to those two centers. I'm going to talk with my oncologist in a couple of weeks about the Psma testing...my insurance, of course, does cover me in a "trial" setting. I'm going to have to look into this very soon.
Do u have a supplemental ins to go with medicare?
No...mine is a Medicare HMO and I checked on switching to a supplement and they said ...not with my preexisting condition...until I'm 66.
That's awful. I thought they couldn't do that even if u had a preexisting condition
it was a very good supplement..."Rolls Royce" quality...that my accountant has (who is also going through a different cancer right now). I was disappointed...I thought the same as you...but I think the pre-existing thing is only for "Obama Care" insurers....NOT everyone.
You have to get in Medicare supplement at 65 or right at time of availability for pre existing not to count. You can apply 90 days prior or within 90 days after your 65th birthday or if you become disabled you need to get the Medicare and Medicare supplement after your SSI or SSD has been approved.
That's what I did. Disability and Medicare with supplement
Hi Bill,
I'll have my first appointment at MSK in NYC next Thursday for a "second opinion", (at least to start...).
If you don't mind, who do you see there and are you satisfied? My appointment is with Dr. K.Autio, who someone recommended
thanks and best wishes to you
My oncologist is Karen Autio. You're in good hands. Tell her you've met me. Bill Lombardi
quite a coincidence! thank you!
Okay, you two guys are getting me depressed. My son, age 49, just received his diagnosis last week, still waiting for scans. He is Gleason 7, they found cancer in 6/12 cores. He lives in Ft. Lauderdale, so I wanted to ask if you have names of good doctors at U. of Miami? We are still looking for the right doctor, not sure yet if it will be radiation or surgery. Any names you have, or know good things about, would be appreciated. Thanks from a very concerned mom!
I'm at U of M currently...but I did have my radiation at Broward General...where I went from a Gleason 6 and early diagnosis (we thought) to Stage 4 in just a year after that...so I jumped boat and went with U of M. My current oncologist is Dr. Sengal there. He might be a stage 4 specialists...not sure. I also saw another doctor there where I had H.I.F.U. (look that up) U of M was the only one that offered it. I did it after radiation....when we realized they had not gotten all the cancer.
Good Luck
John (p.s. diagnosed with cancer at 57 and quickly into stage 4 and currently 61)
p.s. I live in Ft. Lauderdale and get to (luckily) do most of my follow up in Deerfield Beach and most of my testing there now....it's a LOT easier than getting to Miami's Campus.
Thanks, John. Is your doctor a medical oncologist or radiation oncologist? The only name we have for U of M is a surgeon, Dr. Gonzalgo, and he is a surgeon. Still looking...Thanks again. I noticed several of the doctors also have an office in Plantation, which would be convenient. I know how bad the traffic is in Miami!
I actually saw Dr. Gonzalgo as my first contact with U. Of M. appx 3 year ago ...but it was after I had already had Radiation with Broward General. He seemed great. Since I had already had radiation...he recommended the new HIFU they had just gotten approval (about 3 years ago) to do. You can't usually do Radiation and then more radiation ...if it's not gone...but you can do Surgery or HIFU and then radiation. I was told that Gonzalgo was the best there. He is the one that will direct you...after more tests, probably, to see if it's spread from outside the prostate...on what is the best way to go forward. Surgery, HIFU, radiation...I wish I had gone there first and NOT Broward General. I think he was very good although I got to see him very little because (like I said) surgery was not an option for me. Has your son had a Axumin Pet Scan yet? When I had mine done ...it's what turned the tide in my treatment plan...that's when it was diagnosed as Stage 4. Hope they have caught it early enough for treatment to the prostate to be enough!
All the best,
John
John, thanks for sharing your background, although I must say it's a bit scary! So sorry for you, and let's hope your latest treatment will give you many more years. My son is only 49, went for a routine physical and had his very first PSA test, came back at 16.4. This was the last thing I expected to worry about. My husband is a Gleason 9 (had RP in 2010 at UCSF, where we live.) His is being well managed, even though he is in his second recurrence of PSA at this time. It is still quite low and he expects to go back on treatment when it gets higher. Due to his experiences, and the fact that I'm a retired oncology sales rep, I thought I understood a fair amount. But the more you learn, the more you realize you don't know! My son is quite naive to all of this and doesn't seem to realize how serious it is. Not that I want him to worry, but I'm afraid it's going to get real serious real soon. Because of his young age, he needs to work, both for income and insurance, and he has his hands full with that right now. So I am doing a lot of the research for him. We are leaving the country tomorrow for a short (long ago-planned trip) but I'm sure I will be back in touch with you soon. Again, it was very kind of you to share your story. I wish you the best.
Sorry to seem scary...everyone's journey is different. He just needs to be on top of this ...RIGHT NOW...and I think for South Florida U of M is the best place.
Enjoy your holiday and keep in touch,
John
p.s. and of course, you can contact me directly on here.
Hello Bill. Good to see you visible. I'm still on the Lynparza clinical. (three months now) I'm hanging in. Hope you are too.
Hey Ralphie. I'm still on the lynparza too...but PSA is starting to rise again. Did you or are you experiencing any side effects?
Along with Lynparza (Olaparib), 3 months now. I combo that with another clinical called Cediranib. Also take Prednisone, Tamsulosin (Flowmax), Trazadone, and Oxycodone and Morphine for pain. My side effects are numerous. Gastrointestinal being the worst. Also blurred vision and continued pain (urinary with blood, groin, and rectal). I also have a metal urinary stent. I have a urology consultation next week to get a clearer picture on things. My PSA is holding at .05. I get a Lupron shot next week after 6 months. I hope that doesn't spike it. I also have a family that really can't comprehend what I'm going thru. Add to that I'm single and an outcast now. So I ride the journey of others such as yourself and great john and other brothers to continue on. We all hope there is a light at the end of this tunnel.
Ralph...
just read this and I'm close to tears....I have my partner....I have a couple of friends...but outside my partner...no one can really understands what I go through...from the first Lupron shot. To me that was the game changer. Wish you were closer...we'd get together and hang out! There are no local face to face groups close by to me...but you should perhaps, Ralph, look for something in your home area. I hate hearing when someone doesn't have a "significant other" / family member / caregiver...even when they are not the best in the world...it's still an amazing asset. It's always good to talk with someone who can really understand. Email is good...by voice...is better!
big...make that HUGE, hugs,
John
Nice, John. ❤❤❤
Ralph. I'm so sorry. And I get it. No one really understands the Hell that can be our lives. You have us, but I also understand that we cant really be there as a presence. ❤❤❤❤