I've been on ADT + Xtandi for about a year (see my Bio for details) and my PSA has been slowly and steadily reducing over that time - now down to 0.05. However, my 3 CT scans (last August, December and last month) are showing a slight increase each time in the size of my lymph node mets and the bone mets are not reducing. My MO says this is quite unusual and is thinking that the PCa does not express much PSA and may be quite aggressive given that it's not reducing with the medication.
He has planned a biopsy of one of the groin mets and will give me another CT scan in September. If there is still an increase or even no reduction in the size of the mets, he's talking about moving me onto the next stage of treatment which on the NHS is chemo.
Questions:
1. Has anyone else experienced reducing PSA with increasing tumour size while on ADT? If so, what was your next step in treatment?
2. In my situation, would chemo be the best/most effective next treatment or something else such as Lu-177 or anything else? Or should I just wait until my PSA starts increasing before changing?
3. Would my situation "qualify" as mCRPC for the purposes of getting on a clinical trial?
Thanks.
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Benkaymel
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I think you may want to take this one step at time. First get the results of the biopsy. You can't decide on any therapies until after you get the results of histology, IHC and genomics (if enough tissue).
I don't know what you mean- the OP did not have triplet therapy. Triplet is only a therapy given to patients who are originally diagnosed with metastases.
I am pretty sure it is listed in the NCCN as an option after recurrence. PRO-12 for castrate sensitive recurrence. ADT, Docetaxel, Daralutamide. Isn't that triplet?
1) The OP is not "recurrent." "Recurrent" means that primary RP or RT was triend and the patient progressed in spite of that. The OP is progressing after Xtandi, radiographically, if not PSA. The reason has to be ascertained first.
2) The OP is castration-resistant. Metastases continue to expand in spite of castration.
3) You are looking at the wrong page of the NCCN guidelines. PROS-10 is for recurrence after prostatectomy. PROS-11 is for recurrence after prostate radiotherapy. Neither page lists triplet.
4) Triplet is only currently approved for distant metastatic PCa (bone scan/CT) before other medications have been tried. There are good clinical trial results for enza+docetaxel after enza failure (mCRPC), which may be an option for the OP depending on the biopsy results - but the biopsy will determine that.
The biopsy of a groin met came back as the same PCs type as my original prostate biopsy. My September CT scan shows that there are now spots appearing in my liver so my MO has stopped the Xtandi and booked me in for docetaxel starting on Oct 12th. This is all the NHS has to offer but would you consider it to be the best next step for me?
I was rather hoping to get more than a year out of HT so wonder how long any further treatments will last.
Docetaxel (the SOC) provides most of the PFS, adding Xtandi to docetaxel only added a month (median.) But a lot of the patients were far along - you may do better.
Have you been genetically tested, my uncle had the same thing happen and they had to switch to clinical trial after the genetic testing and now his cancer is responding, best of luck to you.
My prostate biopsy sample was sent for genetic testing to see if I qualified for a clinical trial. Unfortunately, the sample was deemed not good enough to get a result so I only had a liquid biopsy and that returned negative for qualification.I'm hoping the new biopsy of a groin met will be useful in deciding the best treatment.
I have a theory about this, or at least am developing a theory, based on my own experiences. I have taken Lupron shots quarterly and had PSA <0.1 for three years now. I have had metastases that I feel on one rib and in my spine. I believe I am contolling their growth and they tend to increase and decrease in pain level.
I think they are growing very slowly with the small amount of testosterone in my body. My testosterone level has been low, usually <3. But small as that is, it is not zero. Also, I have a suspicion that the met growth is diet related. I avoid beef but I have loosened my diet restriction at times on pork. The growth of mets may follow pork consumption, or more specifically, pork fat.
Growth of mets causes inflammation. Inflammation increases pain. I respond with heat and lycopenes, and the inflammation/pain subside.
Thanks N-So, interesting theory. I have never been a big meat eater and certainly rarely eat beef (only ocassionally as mince) and never eat pork. I've been largely vegetarian (ocassionally eat chicken) since I was diagnosed a year ago. I'm also on daily lycopene capsules (2 a day) and have regular hot baths and showers so in my case, there seem to be other factors at work.
What does your MO say about your slowly growing mets with very low PSA while on ADT?
Well, not much, because when I meet with the MO I don't have pain. I rid my pains when they occur, between visits. Once I asked if I should take scans or something, but she said no need for scans without pain. As for lycopenes, I also take one 20mg pill and V8 juice daily, but if I sense inflammation I take the V8 more frequently.
Once long ago I mentioned the rib pain to my RO who scheduled a scan plus biopsy, but by the time I got to the scan a month later they could not detect it. That rib pain comes and goes, even now, six years later, but it is faint if anything. I am thinking that the lycopenes kill the prostate cancer, or maybe increase T-cells that kill PC, and if I take enough of them very frequently I may rid myself of this thing.
I only get actual pain from one rib met and that isn't growing or shrinking. Strangely it's the pelvic lymph nodes that are slowly increasing each scan and I never get any pain from them so I think you should be careful just relying on what you feel and having no scans to monitor what's happening with your mets. Still six years is good going so I hope it stays good for you.
I try to eat natural sources of lycopenes at every meal. I also take supplement pills 20mg per day, which I put in cooked food. Main lycopene intate is from low sodium V8 juice, each morning, about 1/4 cup. Sometimes I drink gac juice instead. I grow tomatoes during summers, and try to put them into cooking, e.g. plant-based meat with spaghetti, chili, tacos. The lycopenes in tomatoes need to be cooked. Also they need to be eaten with oil to enter bloodstream. Seems the lycopenes only enter bloodstream from the small intestine, so time effect is limited to about six hours. Hence best is to have every meal. Watermelon has lots of lycopene. Also catsup. bbq sauce, taco sauce, shrimp coctail sauce. Tomato soup and sauce. Thousand island dressing.
Lycopenes seem to activate T-cells which attack PC mets, in my case.
Watch for hypertension, try to limit sodium intake.
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Wondering where this is headed....rising PSA and bone mets
Very low psa with new bone mets
PSA raised rapidly after 2 months finishing chemo
My Dad Stage 4 Pca - MO happy to settle for PSA 30, as its not 'curative'!
