I promised I would update you after my scan to see how the chemo was progressing. Well, the main reason for the chemo was that spots had appeared in my liver. Last week's CT scan showed that the spots have grown "significantly" so the chemo is not working. Also, my liver function blood test results - ALP and ALT have shot up so my onco has cancelled the chemo.
I asked what's next then and his first answer was "I'm not sure"! When pressed he said there is Cabizataxel and/or Carboplatin available on the NHS. My inclination is to take things into my own hands at this point - self-fund a liquid biopsy to see if there are any mutations that suggest treatments. If this is negative, I plan to self-pay for Pluvicto if I am eligible for it. Not cheap, but my options are running out.
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Benkaymel
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Liver metastases seldom respond to Pluvicto. Recommend a tumor biopsy with histology, IHC and genomics.
IHC stains (wish list - you won't be able to get them all) - AR (androgen receptor), PSA, PSMA, MSH2, MSH6, STEAP1, PD-L1, PTEN, chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP), DLL-3, CD56, Somatostatin (SST)
Thanks Allen, I can be sure that the NHS will not fund a tumor biopsy. Is this something I can get done privately? (obviously I'd need to get the hospital to provide the tumor sample). Do you have any suggestions as to where I could get it done?
I'm sure this may be a little outdated but a good starting point. I'm sure the test is more than 5800 pounds but probably not by much...I think you need to pay for the biopsy separately....not sure what that cost is..but there's a link to the reference cost.
IMO what you should request is a biopsy of the liver mets to do genetic studies since the treatments shown to offer an advantage in the control of the cancer are related to specific genetic mutations indicating the cancer may respond to PARP inhibitors or Keytruda or similar meds
Tal lAllen has some good comments. Unfortunately, I totally agree with you about docetaxel, having had it early on. Combining it with ADT is great but the ADT does all the work.
What is your PSA now, just asking because you wish to do a liquid biopsy and for that according my information you ideally need a PSA above 10 otherwise the liquid biopsy will not show maybe anything. In Australia someone self funded a Guardant 360 liquid biopsy and he said that it was 5000 A$ some time ago. Maybe you could get it on special but you have to be lucky. If your PSA is low you should get a tissue biopsy samples. That is sometimes a problem getting a good quality tissue biopsy sample. They sent my tissue biopsy sample to Peter Mac cancer Centre and it was rejected on the quality ground.
My PSA is low (about 0.7) but it always has been low and is not indicative of the state of the tumours. I don't know if this changes the effectiveness of a liquid biopsy.When first diagnosed I applied for a clinical trial and they sent off a tissue sample for genetic testing but it was rejected on quality grounds so they only did a liquid biopsy.
My MO is anthony.joshua@svha.org.au you could contact him about a phase I clinical trial with the latest PARP inhibitor from Astra Zeneca plus Nubeqa. He wants to put me on this Clinical trial but I don't have any Mets yet visible on any scan. Could you move to Australia?
You would get multiple tissue biopsies plus liquid biopsy according to my information. If is definitely a good possibility if you have a generic mutation. The New parp inhibitor from Astra Zeneca should be less toxic.
Sorry to hear about this hiccup. Is this any help? Some trials were conducted in Newcastle - not sure if you could get it off trial on compassionate grounds?histosonics.com/
I understand that you have a metastasis in your Liver and it is growing. Is it possible that you may have two cancers? My sister had operation two months ago and just received a first cycle of taxane chemotherapy 150mg per m2 plus carboplatin. The diagnosis is that she has first stage ovarian cancer plus third stage cancer of uterus.
Did they consider that you may have two different cancers? I am not a doctor just thinking with my head and unfortunately I don't have a best opinion about doctors. I believe that you could get a liver fibro scan. My liver fibro scan results are in a normal range 3.7.
They should be able to see from a liver tissue biopsy sample if you could be treated with PARP inhibitors or keytruda.
Interesting cancer not responding to chemotherapy. Maybe it is a neuroendocrine version. They should be able to see this from the liver biopsy. What did they say?
Could you get an FDG pet scan plus a PSMA pet scan in order to see better your options?
When I was diagnosed 5.5 years ago I wasn't happy with the nuclear medicine bone scan only, I wanted to see if it is really a prostate cancer by getting a PSMA pet scan. I knew that it is a prostate cancer but I had so many lesions that I couldn't believe that all these lesions are prostate cancer, and they were all prostate cancer.
Unfortunately the NHS is very limited in what it will do. Although they did the liver met biopsy, they only did basic checks that it is prostate cancer and will not fund more extensive genetic testing. They told me it is not neuroendocrine or small cell cancer.
I had a PSMA PET scan a year ago on the NHS and it was very PSMA avid but I don't think they will give me another one so I'd have to self-fund - which I'm prepared to do with a view to possibly having Pluvicto but now I'm not sure because Tall_Allen said that liver mets seldom respond to Pluvicto.
I remember that also. What was the SUV max value of the PSMA pet scan results?
FDG pet scan could show you PSMA negative cancer if you have. I also would not have Lutetium PSMA treatment if the liver metastasis would not respond. I believe the basic genetic test on your liver tissue biopsy sample should not be too expensive. In Australia this test is now funded. We usually follow what UK is doing.
That liver metastasis also disqualify you from Xofigo which is funded by NHS but not funded in Australia. If PARP inhibitors are effective than a pure man PARP inhibitor is carboplatin.
Or maybe you could just find out with a simple blood genetic test if you have inherited BRCA mutations (if they don't have anymore your tissue samples) but a first test should be on your tissue biopsy sample and if it is positive for BRCA mutations than the next step is to test a blood for inherited BRCA mutations.
The report from my PSMA PET scan did not include any SUV values. I agree that a liver tissue genetic test is what I need. I'll ask my MO about it but I doubt the NHS will fund it. Moonrocket sent me a link to a test that would cost around £6K.
In 2021 my hubby had tumors appear in his liver. He has always had low PSA. The tumors showed to be neuroendocrine prostate cancer, a different version of PC that is very aggressive.
He had an ablation performed on each liver tumor. This happened over several months. They would ablate 5 or 6, and on the next scan he would have a few more new ones, which they would ablate. He’s had no new liver tumors since late 2022.
We are just now beginning to see decreased liver function and are set to see a liver specialist next week. He’s not in any pain and the only “side effects “ we are seeing from this decreased liver function is fluid retention in his abdomen. Paracentesis (draining the fluid) works to relieve the slight discomfort.
Hoping you can look into having your liver tumors ablated. We are being treated at MD Anderson in Houston.
As an Englishman you are entitled to invade the U.S. again. So with that thought in mind is it possible for you to visit us and also be treated in an exemplary Ca Hospital in NYC, namely Memorial Sloan Kettering cancer center? (Cost of course).
And he could apply for a B Visa to stay in the USA for a duration of any clinical trial, but as always financial status is very important. I am just wondering if you in USA, in NY have charities which could be interested to organise basic accommodation in NY for the duration of any clinical trial?
I believe that Texas could be more affordable by than NY. Medical doctor Anderson has probably some clinical trials? Again it is only my idea. I would not have a financial means to go to the USA.
I'm sorry but I do not know of any organization that he would be able to contact for help. If he was one of those Illegal aliens who jumped the border he probably would be eligible for A to Z help and for free. Ask Darryl if he knows where he can get help here in the US. And you're correct Texas would be less expensive than New York City. He needs help but it's almost like real estate rule number 1. Location, Location, Location......Again, Sorry I can't help.
Really sorry to hear the chemo outcome. Thanks for posting. I for one am finding your updates and the replies really useful as also UK based. Are you not eligible for any trials? If LU is not likely to help in your situation it's an expensive punt. Let us know about the IHC quest. This is something TA often suggests but how one gets this in the UK goodness only knows. Hopefully your onco might know or the Marsden might know . I fear that we might be headng your way down the difficult NHS pathway post Abi/Enza so do keep posting if you can bear to. It's much appreciated. Best wishes.
Thanks, very happy to keep updating. As you say the replies are very useful. If I can get a somatic/genetic tissue test I'm hoping it might point me to a suitable trial but I think I'll have to fund it myself.Good luck on your journey.
Just occurred to me that the helpline at Prostate Cancer UK might be able to tell you about any relevant recruiting trials in the UK and/or where you could access the tests you need on a private basis or at least how to find out. The lines are staffed by specialist nurses and I have found them helpful in the past.
I agree entirely. I don't feel that my current MO is being anything like proactive enough in investigating why my tumours have not responded to the treatments. He just seems to be following the standard NHS script of "let's try this next and see what happens". Now that docetaxel has also failed, enough is enough and I need some serious diagnosis of what's going on with my cancer. I've compiled an email to send to the MO with a number of possible options based on MY research and requested an urgent meeting with him to discuss.
I feel that the number one action would be a somatic/genetic test of the liver met sample they biopsied to look for clues as to useful treatments. If he refuses to do this, I will certainly be looking for a second opinion or if necessary, self-fund the test.
Thanks, I agree 100%. I've been working continuously for 49 years as a reasonably well paid engineer before I retired so have paid hundreds of thousands of pounds into national insurance and tax. Now it's my turn to get something back.
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