PSA rise but scans are clear. Appetite and activity level are 0

[StayingSTRNG]

I have spoken on here a few times about my dad who is on Erleada + ADT but it has failed. They have done quite a few scans recently because he is in significant pain. But all scans have come back “clear” in that there is no significant change in metastasis etc.

we are at a point now where he barely gets out of bed each day because he is in so much pain. If we don’t prompt him to eat, he won’t and has gone some days without consuming more than a cup of coffee. His weight is down close to where he was pre treatment.

His PSA is going up, but do the scans being clear mean it could be something else or are these scans just not able to pick up what is really lurking in his body? (Btw I’m sorry for so many questions, he has just deteriorated fast in the last couple months and I don’t want myself or his doctors to miss anything)

[mrscruffy]

Have you tried Cannabis?

[StayingSTRNG in reply to mrscruffy]

as a former smoker (cigarettes +) he does not want to go back to old habits and anything ingested he’s always been afraid of. He does not like the feeling

[addicted2cycling in reply to StayingSTRNG]

Has he had the following scan for locating ??

*FDG PET-CT* may be useful in diagnosis and staging of aggressive primary prostate tumors (Gleason score >7) and as such incidental findings of high FDG uptake in the prostate gland should be further investigated. FDG PET-CT may also be useful in the detection of metastatic disease in a small fraction of men with biochemical failure with scan sensitivity that increases with increasing serum PSA level, in the assessment of extent of metabolically active castrate resistant metastatic disease, in monitoring response to androgen deprivation therapy and other treatments, and in prognostication.*

[StayingSTRNG in reply to addicted2cycling]

Thank you for this, he has only had a regular CT, MRI and bone scan up until now. No mention of any other types of scans. We see the MO today so I will update on that point

[addicted2cycling in reply to StayingSTRNG]

Also Ga68, PYLARIFY, Axumin scans. PYLARIFY PSMA Pet is readily available, check your zip code for closest --

pylarify.com/site-locator

[RMontana]

… I would look at getting a second opinion. If there’s pain, then this is an indication that something is causing it. If this team can’t find it, maybe someone else could. They do call it the medical arts for a reason and within it, they “practice” medicine. I don’t mean to be flippant, but if it were me and I have pain and my current team, can’t find anything. I want someone else to look at it. And if they can’t find something then someone else again to look at it. But I will keep digging. Last time I looked most medical insurance is more than happy to pay for second and third opinions.

in the meantime, PSA by itself is not as important as the doubling time. That is more critical. Take a look at this discussion and see if this helps you put a timeframe on the PSA rise.

healthunlocked.com/active-s...

Good luck. Rick .

[RMontana in reply to RMontana]

… I don’t mean to alarm you, but a second thought is that your father’s physical condition is critical to his future ability to successfully fight this disease and have some positive outcome. If he cannot address this and get active, then it’s going to be much harder for him to fight off this cancer. So this is really important that he be able to get up and at least go about his life in some reasonable fashion. See what you can find out. Rick.

[StayingSTRNG in reply to RMontana]

I actually appreciate your honesty, that is of course my fear. If he needed to do chemo or anything at this stage, I don’t think he could handle it. He tries so hard to do the things he loves but his pain has become unbearable. We see the MO today, so I’ll update

As for scans, he has only ever had a regular CT, MRI and bone scan

[RMontana in reply to StayingSTRNG]

I think you’re well past the point when you need to have a PSMA PET scan. That may reveal some thing that has been missed by the traditional scans. PSMA PET is really the standard of care now for prostate cancer. You should push hard to get this. This is a good podcast on that scan

healthunlocked.com/active-s...

This is another reason that a second opinion may be helpful. Someone else with a different set of eyes will look at it. Tell your dad the one thing you cannot have as a patient is loyalty to your doctor. I made this mistake for 10 years and I’m paying for it. We don’t owe are doctors anything. The minute that we have any doubt or want an answer to a question that is not being addressed we have every right and need to seek another professional opinion. Actually a good doctor will welcome this. He should be glad to have someone else double check his prognosis. If he says otherwise, than it is for sure proof that you need to seek a different view of this diseases progression.

His doubling time is very fast. This is not a condition that can wait for further investigation. I will try to get a second opinion and definitely a PSMA PET scan. Rick

[StayingSTRNG in reply to RMontana]

we just got his most recent PSA and it is 63.1 They are starting paperwork to do Olaprib but we haven’t seen the actual MO yet

[garyjp9 in reply to RMontana]

Along with the PSMA PET scan, I would encourage you to also request the FDG-PET referenced above. The PSMA PET will only show PC that expresses PSMA. The FDG-PET will show any non-PSMA producing cancer.

[StayingSTRNG in reply to RMontana]

I missed this, his PSA more than doubled in 4 weeks last check. He was stable around 1.68 for a bit, went to 3.44 within 2 months. Our MO did not alert us of anything, never brought it up, I brought it to their attention and they said they will check again in 4 weeks but it could be nothing. It then rose to 11.7 and they concluded that Erleada has failed.

That was maybe a month ago now, so he’s still on Erleada waiting for his next steps. Personally I have felt the MO has been way too lax, movement is way too slow (I am in Canada), and he has only gotten worse because of it. If this were me too, I would have already gotten a second opinion but my dad is someone who trusts that anyone who is a doctor can perform the exact same level of care, it’s been hard to get him to see that maybe we may find answers elsewhere

[SteveTheJ]

Perhaps the pain issue isn't the cancer? And cannabis doesn't have to be smoked. If you live in a legal state you have options. If you live in TX where it isn't legal you still have options. Lmk if you want more info on that.

[StayingSTRNG in reply to SteveTheJ]

perhaps it’s not, I thought maybe he might need a hip replacement or something at first but that is something they would have seen in one of the scans. They checked his spine for a fracture and it was clear as well

As for cannabis, we are in Canada so we are good on legality but he just does not like edibles, he hates how he feels. But maybe there is more to it, I personally have no experience with it at all so do correct me if I’m missing your point haha

[SteveTheJ in reply to StayingSTRNG]

You said he didn't want to smoke hence my response. The whole point of cannabis is to improve how he feels so if no form of cannabis makes him feel better, forget it

[StayingSTRNG in reply to SteveTheJ]

Yes I know, I did mention in my initial response that he doesn’t like ingesting it either but maybe I wasn’t clear sorry. BUT I will still suggest it to him either way, it’s not really something we have discussed since he got diagnosed

[Willydad]

The liquid THC (many strains and strengths) sold in most cannabis stores(in Canada) is very easy to take via dropper, and a very small amount should not make him feel high but may help with his pain and appetite (I take it to help sleep). Our issue with switching MOs in Canada is you will be reassigned to one who is just down the hall from your current one, and that may take time. To ‘choose’ a specific one may involve several extra months wait, or just be denied due to existing heavy work loads. Our treatment and cancer drugs are free, but only if one stays within their own province(exceptions can be smaller ‘border’ towns much closer to cancer centres in the province next door). And SOC available can vary by cancer centre. I had to go to a different province last year for a PSMA PET and self paid. Obviously we do have the option (if one can afford it) of going out of country for 2nd opinions and treatment, which to no one’s surprise our federal and provincial government leaders have not hesitated to do over the years (minor venting, apologies).

[StayingSTRNG in reply to Willydad]

Please do vent, it’s nice to hear I’m not alone in my frustrations in Canada. I already know the reality of our medical system but experiencing it like this has been a rude awakening.

If I were not constantly researching and asking questions, our MO would have been content letting my dads PSA rise with no investigation for 3 more months. But time has been our enemy and that’s why we stuck with it, I didn’t expect to see him look as bad as he did pre treatment only a year after starting treatment but maybe that’s the nature of the beast.

As for the drops, that’s a great idea thank you so much

[Nfler in reply to StayingSTRNG]

yes def try n get a psmA ASAP and as far as the liquid or edibles that’s pretty much what marijuana was intended for, relief of pain the more natural way. It also has anti cancer ♋️ effects n may help as well… Good luck 🍀

[David1567]

Hi - also here in Canada. Near Toronto. Our MO has been great and when my husband was in pain (due to mets in lower back) she referred him to a RO (for SBRT radiation) you could ask for a radiation referral? This was all being done at the same time his abiraterone was failing and he was starting chemo. Also she referred him to a trial MO at princess Margaret, who checks in with us every 6 weeks. I have found that the cancer seems to take over when he has a lot of pain and not moving around as much. He also has now a Palative pain doctor and he will discuss cbd type treatments with us, because my husband is not a smoker or doesn’t think edibles is his thing but he realizes the Hydromorphone prescribed has been useless and well as other over the counter pain meds. So he said he would meet with him. So maybe ask your dads MO for these referrals? The not eating is very concerning. dexamethasone (and prednisone) always makes my husband want to eat. Maybe the scans missed the problem? The radiation doctor would look at them closely and know better as to what may be the cause of the Pain. Best of luck getting some answers and don’t be afraid to ask and push for better care.

Tracey

[StayingSTRNG in reply to David1567]

we had our appointment yesterday, we are actually at Princess Margaret. Pretty much everything you mentioned we talked about so thats good. He has a referral for radiation and for a palliative care doctor. They said it’s possible the scans missed it but that because he’s in pain and his PSA went from 11.7 to 63 in a month, it’s clear that his cancer is resistant so a PSMA scan wouldn’t really change the course of action (which is to start Olaprib). I really hope he starts eating, the most he eats in a day is maybe a bowl of soup and a smoothie if we are lucky. Otherwise he won’t eat.

ALSO, thanks for mentioning the hydromorphone because my dad was prescribed that yesterday but he had it in the past and said that it didn’t work at all. So that just confirms his feeling there

[barryium in reply to StayingSTRNG]

My husband was on the same path as your dad last year. He stopped eating due to the pain and stopped his cancer treatments because they made him sick due to the pain. He lost to 114 lbs. He did many, many things hoping to stop the pain. Short version, we finally went to a neurologist in November who found he had 6 pinched nerves in his back. He had ultrasound ablation and the pain stopped. He is back eating, taking his meds and improving daily.

[StayingSTRNG in reply to barryium]

wow! Thank you so much for that information. The radiologist mentioned a lot of his pain may be because of the bony metastasis causing nerves to be entrapped

Maybe this could be an option for him! Thank you again so much