Positive attitude is getting hard! An... - Advanced Prostate...

Advanced Prostate Cancer

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Positive attitude is getting hard! Anyone been here and started something that really worked? Lu-Psma or something?

greatjohn
greatjohn

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)

56 Replies

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

greatjohn
greatjohn in reply to Lombardi24

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....

Lombardi24
Lombardi24 in reply to greatjohn

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.

greatjohn
greatjohn in reply to Lombardi24

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.

Lombardi24
Lombardi24 in reply to greatjohn

Do u have a supplemental ins to go with medicare?

greatjohn
greatjohn in reply to Lombardi24

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.

Lombardi24
Lombardi24 in reply to greatjohn

That's awful. I thought they couldn't do that even if u had a preexisting condition

greatjohn
greatjohn in reply to Lombardi24

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.

Kimmilemo
Kimmilemo in reply to Lombardi24

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.

Lombardi24
Lombardi24 in reply to Kimmilemo

That's what I did. Disability and Medicare with supplement

cbgjr
cbgjr in reply to Lombardi24

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

Lombardi24
Lombardi24 in reply to cbgjr

My oncologist is Karen Autio. You're in good hands. Tell her you've met me. Bill Lombardi

cbgjr
cbgjr in reply to Lombardi24

quite a coincidence! thank you!

sturn
sturn in reply to greatjohn

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!

greatjohn
greatjohn in reply to sturn

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.

sturn
sturn in reply to greatjohn

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!

greatjohn
greatjohn in reply to sturn

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

sturn
sturn in reply to greatjohn

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.

greatjohn
greatjohn in reply to sturn

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

Lombardi24
Lombardi24 in reply to greatjohn

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. ❤❤❤❤

Hang in there John. You are a little ahead of me but I may be catching up. I just had one of those Axion PET scans last week too. They let me choose the music which was nice. Your PET scan didn't show a meningioma in the brain did it? Mine did, so neener neener! :) Hang in there dude. We're all on the same conveyor belt. One day at a time. Hopefully your PSA is descending. Take care of that rooster!

greatjohn
greatjohn in reply to EricE

Hey Eric...yes, I am following you...as I have noted we are "two peas in a crappy pod"...LOL.

I keep hoping. you'll find the golden bullet. It seems like prostate cancer is very different for everyone....but it's easiest to compare notes with someone who's at least close in age and close in "speed" ...as I keep referring to my being in the "fast lane"/ "Fast Track". I'd love to put the brakes on this for a couple of years (as I wish you as well)....so that maybe they can come up with something more durable.

Have a great weekend!

John

p.s. has your oncologist talked about the Lu-psma or anything more "new" and aggressive to fight this boogey man?

EricE
EricE in reply to greatjohn

No but I have it on my list of questions to ask. I'm starting radiation in a few weeks. I very much like my radiologist. He is young, concerned and willing to spend several hours with us discussing our course. I like him and I'm excited to get started, but don't quite know what I'm in for. Sorry I didn't get back to you on this. Thank you for helping out on here.

I had/have a medicare(disability) HMO. That means that I cannot go out of my network of local doctors and hospitals. We have pretty good ones in Miami/Ft. Lauderdale who are in my network....so that part hasn't really been bad. I believe medicare does NOT...and so my insurance did NOT cover any of the Provenge. The cost,I was told, was 137,000.00. I'm on disability and so my income was low enough to quality for grants that my doctor's office arranged. Grants are also paying for my Xtandi (which is 13,000.00 per month and is covered by Medicare, but would have had a 2,700.00 a month co-pay).

I'm hoping my latest pet scan is from the Provenge...and that it's working well for me. They say it takes a long time to tell and I only had it back in June (appx), but I am being optimistic. One of the girls who draw the blood told me that they have seen some great results from it. ~~John

p.s. good luck !

Look at all your hair--you must have been a ladies killer.

Nalakrats

hang in there greatjohn, more and better options are coming.

did you see these links?

dailymail.co.uk/news/articl...

news-medical.net/news/20181...

cancerbreakthroughs2020.org/

webmd.com/breast-cancer/new...

I never made it to psa 1 John, You are not alone. Make the most of every day and keep on keepin on, Plan more trips.

Dan

tehy are getting there !

Car -T,

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"We also do a second measure of remissions where we look to see if there's any measurable disease at all," says David Lebwohl, Novartis's global program head for CAR-T treatments. "A more sensitive test than just looking in the blood. And that was also negative for 83 percent of the patients."

"An 83 percent cure rate in children who would otherwise die is a monumental achievement. If there is a moment where a culture hits on an idea that can cure a disease—vaccines, for example, or penicillin—we are in it. It is difficult to overstate this: Humans have been trying to create a cell therapy for cancer patients for generations. "People said: That can't be done, You can't make them from cancer patients, You can't make them, You can't get them, It's too complicated," says Crystal Mackall. "But it's happening." Though Novartis couldn't confirm an official release date, Mackall suspects the drug will become widely available this year."

popularmechanics.com/scienc...

Lombardi24
Lombardi24 in reply to George71

For all cancer types?

John I am on the same fast track you are not alone brother. I was diagnosed GS7 2015 and had RP. Had IMRT in 2016. Started ADT in 2017. Castrate resistant after 3 months then added cosodex as 2nd line ADT - no impact on PSA rising time. Started chemo in Dec 2017 and this slowed down cancer for a while but I became chemo resistant after 6 cycles. I subsequently tried enzalutamide but it had zero impact.

So now I am on to clinical trials. I stopped enzalutamide a few weeks PSA was 24 last week and rising rapidly and I hope to start niraparib (PARP inhibitor) in next 2 weeks. If this doesnt work then its Lu177 next

Hang in there, there are still plenty of options and more coming down the pipeline. This is a great place to be with a few kindred spirits and shared information.

Keep fighting, and best regards from Hazard

greatjohn
greatjohn in reply to Hazard

I have been looking at parp and lu-psma also..

Keep us posted . And, thanks for your kind words.

John

Hidden
Hidden

Same road my friend....husband had rising PSA. Diagnosed in early 2016. Had 38 radiation treatments to prostate. Gleason score 7. On eligard. Lasted 18 months. Aximum scan showed Mets to pelvic bone and retroperitoneal. 5 radiation treatments to each area and added xtandi Fatigue and hot flashes for sure. Slight uptic in PSA last dr visit. Scary place to be. I stay here and listen to all of the suggestions and treatments others offer. Great great bunch of people here. I get more here than from my dr. You hang in there and ask questions. I remain in hope from those here who always say “more positive alternatives are coming”🙏

greatjohn
greatjohn in reply to Hidden

Thanks for your reply and best of luck to your husband and you.

John

Good Sunday Morning greatjohn,

I have been in battle since August 2012 (please see bio for complete treatment history).

Currently in rehab from lumbar spinal surgery probably due to 6+ years of ADT and radiation. After release from rehab, will have second round of chemo with Docetaxel/Carboplatin, as mets in liver are getting worse.

Like you, it has been a tough ride, but I am still here. Have begun to discuss LU-177 option with Med Onc if this second round of chemo fails.

As I have been on Medicare for the entire 6+ years, costs have been minimal except for drug copays, which were +$20,000 in 2016. Since I am an AT&T retiree, their Catastrophic Prescription Drug Plan has reimbursed me for costs above $5,000, so I am blessed.

Best wishes. Never Give In.

Mark, Atlanta

greatjohn
greatjohn in reply to vandy69

Thanks & good luck Mark!

vandy69
vandy69 in reply to greatjohn

We are with you!

Mark

RalphieJr64
RalphieJr64 in reply to vandy69

Hello Mark, I still pray for you every night buddy.

Hi John, It really is a battle and a rollercoaster for all of us. You're a real fighter and an inspiration. I hope your giving yourself some credit. I follow your journey.

Ralph

THANKS Ralph ! And good luck on your journey!

John

I wouldn't be too worried, John, your PSA is still on the low side and the increase is not a significant change, there can be a margin of error between under 1 and over 1, check if there is a trend and the doubling time too, you have to start getting worried if it goes up month after month after month (for at least 3-4 months).

My father sometimes experiences a slight PSA bounce on Zytiga for some months but it eventually keeps going down soon after, he's almost on his 6th month with it and it works very well for him, our MO is pleased.

I'm not sure if Xtandi is similar regarding this though, but our MO says that as long as the PSA doesn't double month after month the drug is still considered effective, at least to slow down the disease and manage it.

You can try to switch to Zytiga, although it might not work for long, but for some people it did and I heard the side effects are more bearable than Xtandi.

Or you can try chemo again (both Docetaxel and Cabazitaxel) to resentisize the cancer cells to Xtandi and Zytiga but quite frankly, your PSA is low so save that bullet for later.

There are very promising radiopharmaceutical trials too, like LU177 PSMA, you might want to check on those too if you qualify.

If you still have bone mets then Radium223 might be an option.

You might want to try BAT too, you might qualify for it since you're asymptomatic.

As you can see you still have options and there's more in clinical trials.

I still wonder about why you didn't go for radical prostatectomy instead, our urologist claims it has better long-term outcomes than radiation only (at a cost though!).

Debulking the mothership slowed down the whole alien fleet for my father, although this disease is a roll of the dice and what works for someone might not work for someone else.

Best wishes.

greatjohn
greatjohn in reply to Dalph87

Thanks..according to my scans and biopsy....since follow up with HIFU...there has been no cancer in my prostate. Debulking would probably do nothing. Thanks again...I do feel better since the latest pet scan came out showing overall improvement to remaining mets.

John

You and I joined here around the same time. I think of you as a friend. Just getting back from a week in Europe visiting a child and grandkids. Fun was significantly impacted by worrying about proximity and time to toilets, BUT it was still fun. Hang in there my friend. The beast will be conquered.

greatjohn
greatjohn in reply to Canoehead

thanks....and on that issue...

my partner (who has also had Prostate cancer, but not Stage 4) we BOTH wore depends on the trip when we were on long bus excursions...JUST to be safe. Never needed it, but, having them on...took away the worry! It's amazing how much they can hold. I did a test before our trip. Drank gallons...put on one of the depends....stood in our outdoor shower and peed until I couldn't pee anymore. Even asked for a pair of pants to put on to see if there was leaking...NOTHING. Only thing they were "heavy". So they really work and take away that "fear". ~~John

my motto "a girl's gotta do what a girl's gotta do". LOL

I'm in my 11th year of PCa at 73 years old. My PSA has been 0.00 since I started Lupron 6 and 1/2 years ago. I have had 72 radiations in 11 years. I have stopped all treatments and my PA is still 0.00. So I am on active surveillance and my PSA is checked every 3 months. I was told that I may have a PSA less than 1.00 and that would be normal as long as it doesn't spike. I read all of your stories and empathize with you all. You know there are different types of PCa, in different locations, with differing doctors and insurances. When I first started the radiation of 42 treatments they wanted to charge me $130,000. But I found a doctor who charged me what medicare would have paid him, $30,000. I'm diabetic and my insulin went up $110.00 a bottle, and the company who makes it gave me free insulin through my doctor for 3 years. I found a company who paid the co-pay to see my cancer doctor, which helped a lot over the 6 and/2 years. So who knows what the combination of drugs is the answer, but it may not be the same for each of us.

George71
George71 in reply to JimVanHorn

you said "I have had 72 radiations in 11 years" when and what were the additional 30 radiation treatments for if I you don't mind saying?

JimVanHorn
JimVanHorn in reply to George71

Hi again. My first radiations were in 2007 and I had 42 radiations ad went on active surveillance. Then my PSA went up to 74 in 1011, so I started Lupron (with Casodex for 2 weeks) and had a bone scan that showed metastases. So I had 30 more radiations at that time. The metastases were in the hip bone area. I was told that the single cancerous cells can go to the bones, get attached, sink into the bone and form a scar on the bone. This weakens the bone, but the cancer cell is stuck their and if there is no testosterone it can not duplicate. I had 3 shots of Xgeva to strengthen my bones.

I had provenge and Xtandi (after Lupron of course) and have had non-detectable psa for about 4 1/2 years. Be positive!!!

greatjohn
greatjohn in reply to Wflaggs

Thanks ! ! !

Greatjohn,

The NCI match trial is coming and has locations in Miami--3 of them. They are doing gene mapping and matching people with the most appropriate therapy using approved drugs and phase 2/3 drugs----drugs like PARP inhibitors, immunomodulators, and more. It is the first trial listed on this site, and you can read about it--click on the trial and look at locations in Miami. See below:

cancer.gov/about-cancer/tre...

Good luck....should be free since NCI is the sponsor....you may need a referral from Oncologist but they should help you out with getting hooked up...

Take care,

Dave

Thanks so much Dave...

I will ask my oncologist (I'm with University of Miami-Sylvester Cancer) which is listed on here...about this on my next follow up!

and, Happy Holidays and New Year!

John

John,

Happy holidays to you...The NCI Match trial will provide gene mapping to patients and a treatment plan based on solid genetic data to match patients with the best possible treatment. Hope you qualify and get to participate. I have been in one clinical trial and looking at others. Ultimately, that is the answer, we keep banging away at this and life expectancy/ quality of life improves for everyone, and most importantly....we get time

Take care,

Dave

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