I have had prostate cancer for years and I am now at the stage where it has progressed to lymph nodes and a bit on my bones, hormone therapy stopped working so I have been put on chemotherapy to try to shrink it but not cure it.
I have had my 3rd cycle so far of chemo but due to having nose bleeds it’s been a lower dose of chemo. My psa is continuing to rise and I am loosing my positive attitude . Has anyone else experienced psa to rise whist having chemo ?? Does this indicate the treatment is not working.
Thanks for your support..
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Panthava
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Thank you for your support. Glad to hear you are ok and don’t need it. I think the reason wasn’t an option for me is she said I may not be strong enough for immuno trial .
Not too sure Apparantly the immuno treatment is worse. I am on my 3rd round of suppose to be 10 but If my psa carry’s on rising whilst having chemo they may stop it
They will check you out with a bone scan/CT before they give up on chemo.
If you are having progression, you have several options:
• re-challenge with a second-line hormonal agent like Zytiga
• try Xofigo and Provenge
• try a clinical trial
You should also have a metastasis biopsied and analyzed for histology, IHC and genomics. There are some tailored therapies (like PARP inhibitors if you are BRCA+, and Keytruda for MSI-H/dMMR) that might work for you, It's rare, but worth a look. IHC might show, for example, high expression of PSMA that might qualify you for certain clinical trials.
In mid 2018, ADT + Zytiga failed and I began chemo with Docetaxel with Psa 12.I had countless soft tissue mets in lymph nodes and a lot of bone mets.
I had 5 doses of chemo over 15 weeks, and Psa went fast up to 46, then stayed there and and was 50 at end of 5th 3 week cycle. Chemo was deemed to have failed after 4 doses.
I Quit chemo, and in month after, Psa dropped to 25, and nobody knew why, and I moved to Lu177 in Nov 2018 and 4 doses reduced Psa to about 1.7 with a bit of help with Xtandi. In Nov 2019, Psa went to 0.32, and docs were well pleased with PsMa scans showing no soft tissue mets and few active bone mets. But by July 2020, Psa was back up to 30, so I had 2 more doses Lu177, and Psa went to 7 by about Nov 2020, but it is now 28, and I cannot have more Lu177.
Unfortunately, many Pca patients get little benefit from chemo and it could be because Pca is relatively slow growing, and chemo is only active for first week after each dose so during that week Pca cells that divide to grow might be affected, but not much for remaining 2 weeks so net effect is that Pca continues to grow in the two weeks without high dose level. Nobody can withstand a constant high level of chemo.
Each treatment given to Pca antagonizes the Pca cells and may not kill them, and it can promote the Pca to mutate to resist whatever treatment is used as doses of treatment are used. I wish this was not the case, but Pca is extremely difficult to control over a longer term, and I just had my 10th PsMa scan and will know soon if its worth having Ra223, or Xofigo, because the previous PsMa scans showed Pca only in my bones, and FDG PET scan was negative last July, but that may have changed so the PsMa scan may show variations between CT and PET parts of scan.
But I am still pain free and cycling extremely well, so I am actually very healthy while being very sick, but I just won't last long if nothing is done.
I'll know soon what onco wants to happen; he knows I want Xofigo, and can see it may work which also opinion of boss doc at Theranostics Australia in Sydney where I got the Lu177, easy for me because I live only 300km away in Canberra.
The Ra223 would be available here in Canberra. But will I get it? If the last PsMa scan shows huge increase of mets in soft tissues and organs then I may only get Cabazitaxel chemo, which my onco says is better tolerated by patients and works slightly better. Ra223 can only work with bone mets because it goes where there is calcium traffic in and out of bone mets and its not reliant on PsMa expression which is the case for Lu177 or Ac225.
I had DNA analyzed to look for about 15 genes thought to lead to Pca, and this was completely negative, so no PARP could benefit me.
I could easily die within 2 years. But I have survived since diagnosis in 2009 with inoperable Gleason 9, with low Psa at 6. I was diagnosed 5 years too late, and should have had biopsies beginning in 2004 and yearly after, until Pca was found, then immediately had PG cut right out. The prevention measures for Pca are atrocious here, and I think because docs don't want prevention to work or they would have less work and lower incomes.
But Lu177 gave me 2 years. Cost was about usd $42,000, and Ra223 if I do get it will cost more, with no Medicare help.
Hi Patrick. We are G8/G9 (dx 2017) and live near Sydney. When you say “prevention measures for Pca are atrocious here” what do you mean? Is it not up to each male to monitor their own health? And to have it “cut out” is risking seeding and so many other side effects. We have changed our diet, given up alcohol and exercise regularly. We opted for radiation and ADT and so far he is NED. If we need further treatment (almost certain) we will pursue it but I wanted to understand your expectations of our medical system. Thank you for telling your story, so far.
I should have had biopsy as soon as Psa went to 2.5, which is about 2.5 times higher than Psa is for men who are never going to have trouble with their PG. I have a cousin like this. PREVENTION is atrocious in Australia because not enough is being done by our public health system to alert men to Pca danger, or to fully fund biopsies when men want them, or should have them, or to fund RP even when no Pca is present. So men don't get herded to see a urologist until Psa = 5, and and by the time I took that advice, Psa was 6, and I had Gleason 9, and it was inoperable, and it had probably spread to many places, so the Medicare system has paid maybe aud $200,000 so far plus I have paid $80,000 to chase the darn horse after it has bolted.
Chopping out a PG with no Pca or with very low amount of Pca, say Gleason4 will probably give a man ED, so his sex life just stops, but usually incontinence is temporary, but he dos not need ADT or anything else, unless the surgeons didn't get every little bit of PG material out, because any small amount left behind could get Pca over time. There is very low risk of Pca spread with RP if done early enough and well enough, and a Dr Stryker at St Vincents in Sydney was said to be The Best doing an RP because he spared all nerves, and there was no ED, so the side effects of RP were negligible.
Men DO monitor their health, but they do it according to what the Medical System suggests with yearly Psa tests, but that id JUST NOT GOOD ENOUGH. Men are often very careless and ignore doctors, so thy all need to be WOKEN UP!, because taxpayers end up paying vast sums trying to keep old men alive when such money could have been saved and gone to helping the old men's grand kids when some of them get non predictable children's cancers.
I changed diet in 2006, and was 102Kg. I had had a double knee arthroscopy in 2005, and I dared to clean the dust off my bicycles I raced on in 1980s, 90s. There was no pain, so I soon worked up to cycling 200km a week, and weight dropped to 83Kg, and cycling speed went to nearly what it was in 1988, ie, faster than 99.9% of other Canberra residents. My stupid GP said to me in 2008, with Psa at 4, "You are too healthy to have any cancer...." and I said nothing, but thought he was plain stupid, because many healthy men get Pca.
I have had nearly all the treatments that are available, attempted RP, EBRT, ADT, Cosadex, IMRT, Zytiga, Chemo, Lu177, and there is now only more chemo and possibly Ra223 which may work for awhile to delay death, but eventually, my Pca will become untreatable and I can't expect that the public or private medical system will have much more to offer. Of those diagnosed with Pca, 30% die from Pca. But most fight the long fight, and when death does arrive from Pca spread to lungs, bones, brain, the Pca is written down as "lung cancer" but it was Pca spread, so that 30% is a bullshit percentage, IMHO.
Lu177 looked so promising, and I had 7 doses, but now Pca seems like its mutated and Psa is rising fast. Its just no use me expecting a magic fix for Pca when none has been found yet to work well as any man would want, despite the millions spent on research.
The medical system has kept me alive and fairly well for about 4 years longer than if only ADT had been used. In 2009, chemo for Pca was regarded as end stage therapy, so a man went onto chemo and then saw a lawyers to get his will done, and he was dead in a year.
I watched about 3 men who lived in houses around me go down to Pca. I once fixed up a customers old radio, and he told me to get a Psa because 6 of his mates had died from Pca. It seemed rampant. What was so rampant was the stupid belief that men thought they'd get to 90 without seeing a doctor, but I was so glad to see one, and I'd seen my dad die fast at 60 from melanoma, and a sister die at 60 from Oa, and other sister get Brca, but she lived, because she didn't hesitate to get both breasts removed. That upset her self esteem a bit, but we all must stop being what we were at 30, do you not agree? I knew so many silly ways of being at 30, and I junked the lot, except the idea of doing an average of 1.4hours per day of real hard yakka on a bicycle. At 62 at diagnosis, did I need to have a sex life? well no, because all the ladies around me who were young 50yo had completely given up sex, and many had become allergic to men or anything male, so having no partner after I turned 50 seemed fairly normal, and dreaming or wanting any better was absurd. By 60, I expected to get cancer, and probably Pca, and sure enough, it happened.
I had a 10th PsMa scan 8 days ago, but have not yet been told results, but I do fear the worst, because my old Pca is probably mutating into forms that are different, and could be untreatable. Its what cancer does, each treatment stresses the cancer and some of it is killed, but some survivors are mutant cells so they prosper and are not affected by following treatments.
Peter Mac has done a lot of research on Lu177, and they offer a "Lutectomy" where Lu177 is given just after diagnosis which they say can be as effective as a well done RP, under the right conditions. So if all Pca cells have high SUV for Ga68 in scans, the Lu177 should work well, and before the old Pca cells have mutated. Anyway, a number of videos by Dr Hoffman at Peter Mac have been made and can be seen if you know how to Google.
I kept the weight off since 2006, and am 78Kg now. I might qualify now to be "Pinnup Boi at Canberra Hospital " because I am the healthiest stage 4 patient they have seen. For how long though?
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