I joined the group back in August and your posts have been so very helpful. So I’m new here. My husband has advanced PC.
History: Scott was experiencing back pain last winter that he thought was job-related. He is an underwater construction diver in the NY metro area. The chiropractor told him to get an MRI where they discovered bone cancer on the spine. (198.5) (C79.51)— don’t know what that means . But of greatest concern was threat of spinal compression atT12. And so he had emergency neuro surgery- during covid 3 days before his 65th birthday. He then had 5 sessions of special radiation treatments. After a few weeks he started on 6 sessions (18 weeks) of docetaxel chemotherapy and Eligard/ leuprorelin shots ( every 3 mos).
His PSA was 31 at the start and has come down to 1.7 as of early October.
Yesterday he had a skull-thigh CT scan (BC/BS denied him a physician-requested PET scan). Today the MO said, reviewing the CT scan showed that the chemo was not effective, spinal bone mets still exist and looks like there are more. She said the next move is abiraterone and also an injectable osteoporosis treatment, Denosumba. He had his 3rd Eligard injection 3 weeks ago so we’ve yet to get latest PSA reading.
Now we are looking for special funding for the arbiraterone, as the billing department said there are some “scholarships” if you qualify. Otherwise we use Express Scripts through his union plan. We are switching over to Medicare + supplement Jan. 2021. We have also applied to the WTC health fund. Scott did some volunteer work at GZ on the pile just after the attach there and was also involved with debris clean-up from the site a few months later on the westside piers.
Sooo, as you might imagine we are terribly disappointed and I thought I’d check in with you guys to get your feed back. Why didn’t chemo work? Also, PSA coming down, but bone mets persist?
Signed,
Worried wife (aka Elisa)
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Lavender22
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Best of luck to you. My bone mets showed on CT even while resolving but showed less activity on bone scans. Disappeared completely in 3 yrs. Hope yours do too. PSA 63 at start of ADT. 6.4 at start of chemo.+Xtand. Finally pulled it down to 0.12 at last test.
Different. They use different uptake agents and show different things. Bone scans show activity of bone mets, CTs also show scarring from dead mets and soft tissue (lymph nodes etc) that bone scans don't.
Boy, that came on fast. Some cancers just don't respond well to docetaxel alone. Sometimes adding carboplatin to the chemo cocktail helps, sometimes not. When they removed the vertebra, was there a pathology report? Sometimes just looking at it under the microscope or staining with special antibodies (called an IHC analysis) can provide some clues as to what might work (staining for AR, PSA, PSMA, DLL3, Chromogranin A, NSE, CD56, Synaptophysin, and MSH2 in particular). It is also sometimes useful to do a genomic analysis on the tissue - there are a couple of genomic mutations that respond to some special medicines, like Keytruda or PARP inhibitors.
It is actually a good thing that he had another bone scan/CT rather than a PET scan so that they can track changes using the same test.
Scott had a routine check-up the year before, PSA was 4.5 and they suggested he check with a urologist--but he didn't.
MO said it's very aggressive. His dad had PC at age 80 and lived to 90. They surmise exposure at the World Trade Center site did dna damage--but who knows? I will follow every path for a variety of reasons, as it helps everyone.
They used the bone biopsy to do the DNA genetic test about a month ago (10 tests, all neg.) Is this the same as a a genomic analysis? Sorry, so new to this. I will ask MO if they did an IHC analysis.
In mid 2018 I had Psa of 12 after Zytiga + ADT failed to hold down Psa and more mets were seen in PsMa Ga68 scans. Doc prescribed Docetaxel chemo and agreed with me that I thought it would not work, and it did not, because after 5 chemo doses, Psa went to 50, and more mets were seen on another PsMa Ga68 scan. But I had told the doc I wanted Lu177 which is available here in Sydney in Australia, close to where I live in Canberra. I had to fail with chemo to get access to Lu177, so when chemo was deemed to have failed after 4 doses, I was referred to Theranostics Australia. Psa went down from 50 to 25 for no known reason after 5 chemo shots and during the waiting time to get Lu177 which was not long, so I began Lu177 doses on 4 November 2018. Psa stayed at 25 after first dose and went to 17 after second dose, and yet another PsMa scan showed reduction of many soft tissue mets with some action in my countless bone mets. I had a third Lu177, and started Xtandi within a fortnight, and Psa then began to move lower and then a fourth Lu177 dose brought Psa down nicely, and in August 2019, the next PsMa scan showed virtually no soft tissue mets, and big reduction of bone mets. One year after I began Lu177 in November 2019 my Psa was 0.32, but I thought that was mainly due to action of Xtandi, which can hide the real status of Pca in bones. I expected Psa to rise, and sure enough it did, to 30 by July 2020 and I had a 5th Lu177 dose. Last July's FDG PET scan was negative, but some bone mets had grown back in size, a couple of new ones appeared, and some had been zapped and were healing, and no soft tissue mets appeared in my bones.
Psa after 5th Lu177 in July immediately went down, and was 7.9 2 weeks ago after a 6th Lu177 dose on 2 October.
I had a PsMa scan yesterday and I talk to doc giving Lu177 on 13 November to see if a 7th PsMa dose might be needed.
Well, even if the scan shows I have enough met images to justify more Lu177, and I get another dose in say early December, there is no certainty that I'll continue to get huge reduction of all my bone mets, so I may have to have more Lu177 in 2021.
So far I have had to spend about usd $42,000 to get Lu177 which is not covered by insurance or by our generous Medicare, so I have paid usd $58.00 daily to just stay alive for last 2 years. It I had not spent up, I'd have had Pca go right out of control and then be in palliative care. There's a chance I may get longer suppression of Pca progress because Lu177 kills many more mets this year than it did last year. Docs say I might have more Lu177 depending on blood tests and scans. One doc said there was a German man who had 10 doses of Lu177.
Nobody knows at all why chemo failed for me. There was never any biopsy samples taken of Pca in my bones and no analysis done, all that costs piles of $$$$, if a man could actually get it done, and then even if a reason why chemo failed was found, there's little chance anything else could have been done apart from Lu177 therapy that would have killed bone mets with so few side effects, and which was able to be predicted to work with enough certainty. There is a point where despite what is seen to happen in any man with Pca, treatment becomes purely experimental with small likelihood of a getting a large amount of time without Pca status getting worse, let alone getting remission, which is so uncommon I was told by my oncologist when I first met him in 2010 that "There is no cure, and its better to consider your Pca as a chronic disease, which may / may not eventually kill you..."
I have continued to cycle 200km a week since 2010, and thus stay healthy while treatments continue, so I don't have any co-morbidities so indeed Pca may well take me out because nothing else looks likely to. I was diagnosed at age 72 in 2009 with Gleason 9 at PG, later found to be in-operable, so I had EBRT + ADT and I had more IMRT and Cosadex then Zytiga then chemo then Lu177, then Xtandi added to Lu177, then more Lu177 with Veyonda added to Lu177, and Psa is now about 7. I can cycle 100km in a day at age 73.
I am so glad I retired from work at 65. I was earning low wage doing craft work, and old age pension paid more than the craft work. So last 8 years have been quite comfortable for me. I live happily on my own and I ain't an emotionally needy man. Docs enjoy seeing me doing quite well. But there will be a time when times get worse.
I may have to take Ra233, radioactive radium, to kill bone mets if Lu177 fails to do any more good. But that may cause bones to get brittle. I recently had a bone density scan but that revealed I did not have osteoporosis; I just had old bones, but one dose of Denosumab might be a good idea. There are mixed opinions about this and I will discuss with my doc giving me Lu177.
I once read that when bone mets were first seen in a CT scan, a man had a 10% chance of living only 5 more years. PsMa scans see mets about 2 years before CT scans show them so I might say that I could live for 7 years from 2017 to 2024, but the time estimated didn't include the effects of nuclear therapy with Lu177, Ac225, or Ra223. One has to be careful with nuclear therapy because too much can cause bone marrow problems and leukemia.
BTW, I had genomic tests to look for about 12 genes that might indicate what genes made me likely to get Pca, and then suggest PARP inhibitors could work.
I had no genes that indicated I'd get a bad case of Pca. I was not Brca1 or Brca2 positive,
So docs won't bother trying to use Olaparib with me. But genetics lady who took a blood sample said things were moving fast and that in 3 years the library of results where gene defects can be linked to Pca is growing fast. I have to live a bit longer to benefit from research now going on.
Thanks for your reply. I have read some about Lu-177 on this forum. As of now it is unavailable in the US. But I think it’s up for review here.
Oddly PSA #s are diminishing but bone mets active/increasing— so we’ll try the abiraterone next and see, plus other test on the vertebrae biopsy to reveal more info.
Sounds like you’ve been through a lot. Thanks for sharing your history and ideas.
The USA is slow to approve Lu177, maybe because it was invented in Germany, and travel to Germany might not be possible due to C19 travel restrictions. I have met a number of USA men who have flown to Sydney for Lu177.
Maybe there's a trial for Lu177going on in USA. PsMa scans are not cheap but they can give a better picture of mets than most CT scans.
I probably had Pca start way back in 2004, when Psa was 3, and I bet a Gleason 5 might have been found, and an RP could have prevented any mets that begin to happen if Gleason score is high. I had regular Psa tests and docs said do not worry until Psa goes over 5. So prevention didn't work for me. Its too late to change the past, but here I am. Zytiga suppressed speed of my Pca growth for 8 months. But mets did increase during Zytiga slow down. Same with Cosadex added to ADT before Zytiga.
Luckily I have not yet been told of spinal compression due to Pca weakening the vertebra. Biggest met size in bones was found to be about 10mm dia, and I had one in a femur that didn't threaten bone because it was inside bone, not affecting tough outside bone structure.
I think your man is very lucky to have you around,
It looks like Zytiga/abiraterone is next up on the list. And I’m going to follow up on other suggestions from people here in the forum with the MO, esp. regarding testing the vertebrae biopsy for clues to treatment.
But yes, having Lu-177 in one’s back pocket seems fortunate, though costly, there in Australia. There’s been a lady here on the forum from the US who got her husband to India for these treatments and that may be a path for us too. I’ve been to India - Darjeeling-to work on culture projects with some Tibetan friends. And now I know people in Delhi as well. It’s a funny old world.
Yes, my dear, I have read accounts of men travelling to India for Lu177, and I don't recall any bad news. But standard treatment can be 4 doses at 2 months apart, so its quite a bit of traveling, so whether that is possible must be sorted out.
Perhaps the cost of Lu177 in India is a lot cheaper than in Australia. There are so many Indians that they would have no shortage of patients but most would be so poor that getting any treatment at all for any illness is a major challenge. But they do have nuclear reactors and can make the metallic radioactive Lutetium, and then convert its form to be dissolved in water so its easily injected to a vein through a canula. The process of treatment with Lu177 is no worse then having a scan where something is slightly radioactive is infused into a vein to make a good image of the cancer to allow diagnosis. Hence they call the process of having Lu177 "Theranostic", because its therapy combined with diagnosis. Cancer treatment was often very much trial and error, a drug was used, and scans didn't show much, and outcomes were often vague, and once understood from blood tests, it was not good for a patient.
The PsMa Ga68 PET+CT scan involves having very low radioactivity gallium 68 infused into a vein, it takes 45 minutes, then the scan can take 30 minutes, with a bit of waiting so its not onerous. To get Lu177 in India, you would need a referral and have PsMa Ga68 scans provided in USA, and then you'd probably have to have Skype or Zoom talk with doctor in India, and then your man must fly over to get infused with a doctor supervising, and he should be OK to fly right back. But the timing must be just right because Lu177 has a short half life of so many days, and each dose for anyone must be made and sent to hospital and there should be no delays, and if a man missed a flight or was delayed a few days by something else, it upsets a strict schedule and the Lu177 looses potency.
Afaik, Provenge treatment in USA is not available here in Australia. Its **very** expensive, I heard usd $150,000.
Below, ceses makes some good points about having money to spend when doctors ask for it, and to travel. Visa problems could happen. What you have to remember is that although most Indians are terribly poor, the country does produce some wonderfully bright minds, so for those who can pay, they are happy to try to please them.
Zofigo is an option for bone mets. It is not a theranostic type of nuclide which is targeted to Pca cells by a ligand chemical in the infusion.
Zofigo is Radium 223 isotope, and is combined with something else to make it easily infused to a vein. Once inside the body it whooshes around in the blood circulation and is attracted to places where a higher than normal calcium traffic is going on. Pca mets in bones causes calcium levels to vary a lot at mets , and radium has a natural tendency to jump into molecules that normally want to uptake calcium. Once anchored in a bone cell which wants calcium, the radium radioactivity damages that cell's DNA and Pca dies. But radium goes all over body, so dose must be kept low to stop it accumulating to dangerous levels. I have to wonder what happens if a man has arthritis with a lot of calcium traffic. Does radium get absorbed at arthritis sites ? I broke an ankle in a motorcycle prang at age 19 and ankle gives me trouble when walking a long way, but ankle is swollen and bones never healed to same correct shape, but that did not stop me living a good life with a modest disfigurement. I can cycle OK, and ankle is not crumbling, but if I had radium uptake in that ankle it could make ankle bones brittle, as well as others maybe, and docs warn of bone brittleness with Ra233. My docs at Theranostics Australia don't recommend I have Ra223. Well, not yet. Its also expensive, 20% more than Lu177 per dose, with 6 doses maybe used. But I have read accounts of men having had Ra223 in another chat group and Ra223 was about their only option to allow mobility and to reduce pain, in conjunction with sub-cutaneous inserts to give a low dose of some very powerful but addictive Fentanyl pain killer.
I know nothing about Cyber-knife.
Bipolar Androgen Therapy aka BAT may/may not work, and a trial was done at John Hopkins in Baltimore, funded by US Army. It was not recommended where a man had any bone mets because it caused huge pain increase in bones. It is supposed to work best before any mets are found in bones, and where normal ADT is having some effect. So I doubt it could be an option with advanced Pca where the Pca makes its own testosterone and altering the amount in blood by injecting may have no effect, or bad effects. A Dr Denmeade at John Hopkins was in charge of the BAT trial.
The weather here was like winter yesterday, cold and wet, with ppl wearing puffy jackets and beanies. But today the sun shines, and its back to spring, and I feel a lot better after PsMa scan 2 days ago, so I'll get on bike to do a ride.
Next week looks like a torture because its time to clip my hedge or else it just takes right over to become an unwanted Green Wall around my house. I am not like a certain person who once elected, said he'd build a Big Beautiful Wall.
I did once neglect my hedge for 5 years, and it took days to cut, and there were 20 trips to cart away branches in a small truck. I was better able to do all that in 2003.
Cyberknife if there are any specific and structurally dangerous bone mets. It's quick simple and effective.
For everything else, others have given the options.
You really need to do a psma and an fdg scan to see what the heck is going on.
Also, consider bat (bipolar androgen therapy) if androgen deprivation therapy is not working. Only a few docs do that. Dr. Sartor at Tulane is one.
Get prepared to travel and pay out of pocket for what you need. Waiting on the insurance company will kill you.
Used to be you could travel to reduce costs. But Mr Trump has turned USA into a sh*thole country that most other countries will refuse visa privileges.
The CT scan was done to see the current status of the spinal mets following 18 weeks of chemo. MO wanted confirmation of improvement.
Actually, the PSA number had incremental been going down, likely from the Eligard/Luperon injections. Scott has had 3 of them over a period of 9 months.
Because the PSA number had dropped, we were very surprised to see that the chemo had failed. Disappointing...
Yes, Elisa is not common name! A shorter version of Elisabeth, in my case.
Greetings Elizabeth who's married to a nice guy. I hate to do this but it does help:
Would you please tell us your husbands bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!
All info is voluntary, but it helps us help him/you and helps us too. If you do respond copy and paste it in his/your home page for his/your use and for other members’ reference.
Hi. Sorry. I didn't have time to read all responses. Xtandi is very similar to Zytiga. Is that a possible option? Has worked for me for three and a half years. For others also. I believe some have used a program from the manufacturer. Best of wishes!
It’s good to hear that the Xtandi can be effective for awhile.
Our N. Practioner said we may get a free month of Xtandi, but in any case Scott would likely be on both sooner or later. Seems Arbiraterone is less expensive of the 2. So we’ll start there, though it’s frightful how much cancer treatments and meds costs, even with insurance. And the new treatments appear astronomical.
My mom had Parkinson’s disease, which was terrible, but at least the pills were inexpensive.
Hi Elisa - We have tried early Taxotere and Late Taxotere. Chemo did not work either time. All of my husband's treatments are in my Bio. Right now and no thanks or is it thanks? to genetics, we are getting a response from Lynparza. Did your husband do any genetic or genomic testing?
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