Scans: How often do people on here get... - Advanced Prostate...

Advanced Prostate Cancer

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Scans

Muffin2019
Muffin2019

How often do people on here get them , started abritone today, psa went from 6 to 12 after trying casadex for the past three months. Due for a cat with contrast and bone scan tomorrow, last scan found no progression in July. What is the protocol and is scans every three months is safe ,? If the new stuff works and it becomes undetectable then how often do you do scans. Thank you all for responces.

53 Replies
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You get a scan when there is reason to - like if PSA has increased, or a treatment has failed. The health risk from the radiation from the scans is nothing compared to the health risk of not monitoring it.

The Casodex was a fail so onto arbitone , cost us not as bad as 2 years ago, took the first dose thus afternoon and prednisone with dinner, no affect from either yet.

mperloe
mperloe in reply to Muffin2019

I found Costco to offer the best price with GoodRX. $314 for 1000mg/day for 30 days. I spoke to my med onc because many show that 500mg/day taking it with food could be better. Check with your Med Onc to see if that is the case.

Casodex is an older medication. Generally, enzalutamide or appalutamide will be preferred and more effective. Abiraterone does better as first line addition to Lupron. Dartolutamide may be associated with less fatigue but may not be covered. All three are equally effective.

Muffin2019
Muffin2019 in reply to mperloe

I get it at half of that through united Healthcare mail order pharmacy, I asked about half dose and would not recommend it. He wants to start at full dose then go lower if the lower dose works. He said taking half dose with food would be at my peril, first dose has no side effects yet.

mperloe
mperloe in reply to Muffin2019

It was going to be quite a bit more expensive with Medicare Part D. On 1000mg/day, my PSA dropped to 0.013 and T was undetectable. I'll see if the drop in dose makes a difference soon. Good luck and I hope you do not have to deal with side effects.

Muffin2019
Muffin2019 in reply to mperloe

Any bad side effects, used to the hot flashes and sweats, know I am still alive, I joke about it.

mperloe
mperloe in reply to Muffin2019

Rare hot flashes, days that I start with dumbells and bands, I feel a bit better. Most days, I feel like a dishrag, that was thrown in the washer three days ago, washed and forgotten. I've ordered a Peloton bike+ and there is a prostate group of riders. I will try off triptorelin, Zytiga and prednisone will end in mid February. Feel like I'm lost in the fog and having some memory issues.

Muffin2019
Muffin2019 in reply to mperloe

I have to take the one med at 2 in the afternoon yarn the prednisone with my dinner 2 hours later, worked today so that is the easiest until Thursday then first thing in the morning then prednisone with breakfast an hour or more later with food. No reaction yet to the new meds, the hot flashes have come back but not that bad, used to them.

I personally would prefer starting with the half dose to minimize SEs. But suppose if you stabilize PSA decline on full dose you could then try the half dose with food and see if there is any adverse change. “At your peril” sounds like a scare tactic and that doesn’t sit well for me. Monitoring results And adjusting as needed is not perilous as long as your cancer has not become critically advanced IMO.

I will get the scan results in a couple of days to go over next week with the oncologist, I have no symptoms of any kind that would warrant a drastic health issue. I have read that the psa for some rises but after 3 months or so settlez back down and declines. So far there has not been a serious side effect but it had only been 3 days, I will take the prednisone in the morning, learned that lesson quickly. His thought is to do the full, dose first then decrease to see how it effects the psa and the toleration of the side effects. Maybe should have done the 150mg of Casodex but would not give me a script for that amount. Others have had good response with abiratertone and tall Allen did recommend it over Casodex to be more effective so I will give it a shot and stick with it. If the psa drops alot then try the half dose with food, want to make sure it is going to work first. I agree his scare tactics was not exactly professional but has been right about the treatment plan so far.

Agree about Costco, GoodRx. Next year my husband’s Part D plan will be as good in coverage.

We read 250 Mg/day ( not 500) with low-fat breakfast. I believe NCCN guidelines mention this now.

Thus the cost would be one fourth. My husband hasn’t made this change yet but I think he will discuss with his MO this month.

My oncologist poo poo this, he wants to start high then go down possibility down the road as an adjustment, I think he wants to see how effective first. Just glad it is affordable through my insurance.

I was started on 250 mg abi and 5mg Pred in AM with breakfast. Psa non measurable, and t=7

Muffin2019
Muffin2019 in reply to rmarkley

What was your psa and did you have chemo before the meds. Why did you set a low dose instead of the full dose ?

There are data which indicate you receive as much effect from the lower dose taken with low fat breakfast as with the higher dose. For those with out of pocket costs, these are reduced to one fourth the cost. You can find links to the original study and discussion as well as where NCCN includes this as a possibility.

rmarkley
rmarkley in reply to Muffin2019

Before the meds, I had a PSA of 32. I had a couple of Focal laser ablations, separated by 3 years or so. After the first on, in Jan 2014, my psa dropped as expected. After the second on, my PSA continued on its upward slope. I had an in-bore biopsy by Dr. Joseph Busch in Chattanooga, where he found cancer and Dr. Epstein agreed with him. Busch felt that MRI was also showing bone mets. I saw both on the MRI. I felt that we had to get serious about this since with the FLAs, we were just playing whack a mole. The FLAs did buy me 5 years of no comorbidities as would have occurred if I had done what my urologist wanted, and had surgery. Dr. Busch talked to my local urologist and an oncologist at the Harold Alfond Cancer Care Center (HACCC) here in Augusta, Maine. Note that HACCC coordinates care with Dana Farber at the Brigham and Women's Hospital in Boston. As needed, my oncologist has discussed my care with them.

So I went to HACCC with a PSA of 32. Did an Axumin and a bone scan. Both found stuff. 2 small bone mets and prostate lit up, as expected. We elected to do the SOC of 2-3 months of ADT, radiation, and continue ADT for a total of 2 years. ADT using Firmagon, an antagonist, which is more heart friendly that the agonists (Lupron, et al) . Started Firmagon July 14,2020. By Aug 12, PSA was 6.17, and has continued downward to <0.04 on Oct 27. T was <7 on Oct 27.

Added abiraterone-250 mg (costs $85 for 30 pills) and Prednisone 5 mg, once daily with food on Aug 11, 2020. I take them with breakfast. This study discusses the low rate - "Low-Dose Abiraterone With Food vs Standard-Dose Abiraterone in Castration-Resistant Prostate Cancer" - ascopost.com/News/58735. Dana Farber was obviously OK with this, or it would not have happened.

I flunked a Dexa scan, so was told to take more calcium and was put on denosumab (Xgeva) at 12 week intervals.

SpaceOAR insertion Sept 1, and radiation 9/16 to 10/13 4 weeks x5 days a week.

An so we continue the battle. I try to ride my Wahoo Kickr bike trainer using ZWIFT at least every other day. Weather permitting go for a 3-4 mile walk on alternate days, or just walk a loop in the house, including stairs.

As a side note, I am 81 years old, and the lack of T has slowed my biking down a bit.

I decided to go with 500 mg/day. Plan D was $800!

My husband had to switch Part D plans. We hadn’t heard of the option of 500mg per day. Just the low fat breakfast or full dose.

The first month at Costco was $600, now dropped to what you cited. Just glad it is generic now!

dhccpa
dhccpa in reply to Tall_Allen

Amen

podsart
podsart in reply to Tall_Allen

It’s a bit confusing. A while ago there was a discussion at this site about getting regular scans. At that time, it seemed that even those with consistent undetectable PSAs were getting bone and MRI scans, perhaps every three years.

Your statement, “you get a scan when there is a reason to” makes a lot of sense, so why do you think are these guys getting regular scans with consistent undetectable PSAs ( assuming no symptomatic issues)?

Muffin2019
Muffin2019 in reply to podsart

Agree with the whole scan thing, the July scan when the psa went to 6 was good, no disease progression with ct and bone scans. That is when I started the Casodex at 50 mg tablet a day, he pushed back against the 150 mg dose. I asked about the new med with 500 mg with food and said that would be at my own peril so I went with the full dose.

podsart
podsart in reply to Muffin2019

Additionally, as you say “ with CT”, so how does that compare with whole body MRI?

Many years ago I had Avascular Necrosis of the hip. Took a number of MRIs. When I looked at the techs screen as I left, the bone detail it showed was amazing, even decades ago.

The specialized orthodontist that was treating me back then said the only test he used was the MRI as it was superior to the bone scans etc.

Tall_Allen
Tall_Allen in reply to podsart

Bone scans are always given with CTs. The CT helps localize the bone lesions, and shows more of the lesion detail and non-bone tumors. The technetium bone scan alone is very poor at localization and doesn't show soft tissue.

MRIs are sometimes used instead of CTs, but it takes a long time inside to cover the whole body. Sometimes, it is used to focus on a specific area, like the pelvis. CTs have gotten very good, and don't suffer from certain artifact problems that MRIs have. Guys like me, who have a pulse generator installed, can't have MRIs.

PET scans are almost always given with CTs- they are built into the same machine. There are a few institutions that now have PET/MRIs.

podsart
podsart in reply to Tall_Allen

Thanks

A: “Bone scans always given with CTs” and B: “the technetium bone scan alone is very poor and doesn’t show soft tissue”. If B is true why does A always occur?

Tall_Allen
Tall_Allen in reply to podsart

You left out the important words in that misquote. What I wrote was: "The technetium bone scan alone is very poor at localization and doesn't show soft tissue"

podsart
podsart in reply to Tall_Allen

Good catch, appreciate all your help

You are confusing two different things: Casodex is given as 50 mg/day or 150 mg/day.

Abiraterone is given as 1000 mg/day fasting. If that is financially toxic, some choose a lower dose with food.

mperloe
mperloe in reply to Tall_Allen

Many med on a, Dr Jeffrey Turner is mine have many at 250-500mg with food. One study actually showed lower with when taken with food at a lower dose. A dose finding trial does not appear to have been done prior to abiraterone approval.

Tall_Allen
Tall_Allen in reply to mperloe

I agree - dosing is unreliable when taken with food. Now with the lower cost generics available, there is no reason to.

Tall_Allen
Tall_Allen in reply to podsart

There are a lot of tests given inappropriately out there. Facilities and sometimes doctors encourage them to make some money. It raises our insurance costs. The only time a test is justified is when it can reasonably affect a treatment decision.

podsart
podsart in reply to Tall_Allen

Thanks!

The only such explanation with an undetectable is to make sure no neuroendocrine Pca is lurking, although such a discovery would affect treatment decisions.

Tall_Allen
Tall_Allen in reply to podsart

That is sort of pie-in-the-sky. It is very rare.

In your situation with PSA going up during casodex and ADT after your last scan, and now starting abiraterone, the doctors most probable want to have a baseline of your imaging situation. If your PSA goes down and your PSA and ALP remain stable they will wait to have further scans.

Muffin2019
Muffin2019 in reply to tango65

Thank you, this site has good advice.

tango65
tango65 in reply to Muffin2019

Best of luck on this journey!!

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Hey Muffin ! No progression , way to go . I’ve been on a test adt drug( Tak-700) over five years now . I’ve been tested tri monthly plus annual scans ,all for the test . Unless one has active APC running him down ..I think tri -monthly is good . Good job with RT .. peace and good luck on the scans .

Just to be clear, it is Casodex PLUS Lupron that has failed, correct? Wondering what dose of Casodex you took, and why doc added it after two years of Lupron only... was it because PSA was rising and he thought Lupron was failing?

Muffin2019
Muffin2019 in reply to noahware

Yes, psa went from 6 to 12, Casodex was 50 mg, so now scans and the new meds that should work better.

noahware
noahware in reply to Muffin2019

Yes, I was wondering if you got that lower dose... it is a dose usually prescribed when you BEGIN Lupron (to address flare), and not after two years to achieve a response with failing ADT. The dose required to expect a good response is 150 mg. I am confused as to why your doc thought that lower dose would work.

And what I was wondering, but didn't really ask: what was your PSA progression on Lupron alone, over the two years BEFORE it rose from 6 to 12 with the Casodex? Was it already rising, from a level well below 6, for some time before adding Casodex?

Muffin2019
Muffin2019 in reply to noahware

He said if I was not taking Lupton then the rise would be 150 mg, I asked the sane question, I think they get a kickback from the maker. It has been rising slowly over the past two and a half years. He wanted me to take the arbitone instead of Casodex but I wanted to try the cheaper first, maybe the cheaper would have worked with a higher dose but will never know. What happens next depends on this scan, I feel good, no bone pain so who knows, he did mention chemo again but do the scans and meds first.

noahware
noahware in reply to Muffin2019

Okay, makes sense. What I think happens is, most docs will only go with "the rules" for a certain combo of meds, as laid out by the FDA and the established standard of care. Giving 150 mg Casodex along with Lupron is outside normal SOC, even though it might seem very logical and docs like Bob Liebowitz seemed to get good results with it.

One thing he found with many patients when taking a break from combined treatment is that PSA would start to rise and then level off, and stabilize. So it seems wise to avoid "PSA panic."

I am trying the Casodex 150 on its own for starters. I relate to the idea of trying the older, cheaper meds first! Who's to say they won't give a good response, for some of us? Like you, I have no pain from mets, so I feel like I have the luxury of trying and failing first generation meds before moving on to the newer and (hopefully) better.

PSA is of course important, but the scans tell the real story. My next will come only after a full year on the Casodex. Frankly, if my PSA is not spiking but only rising slowly, and I have no symptoms, I will be happy to have scans every six months at most, and PSA every three months. Any more is too much info... I prefer not to think about my cancer non-stop, so long as it appears slow-moving!

Muffin2019
Muffin2019 in reply to noahware

Sounds like your oncologist is more agtpreeable, even psa of 12 is still low, started out years ago at 156..

Yes returned to active PCa Biochemical radiation and ADT failure recurrence Sept 2019.

My 1st pre-emptive needed scan was a Clinical trial research 68Ga-PSMA-11 PET Scan. It was accurate, very accurate.

Next 1st CT Abs/pelvis Chest and NM bone CT scan was 06/08/2020. Second same CT NM bone scan 5 months later 11/17/2020.

Why so soon?? I switched med onc so he wanted new baseline . Ok he got it.

I’ve been on 250mg Abiraterone with low fat breakfast plus pred 5mg twice daily, Lupron 90 day inj since Sept 2019. It’s working. PSA 11/17/2020 was 0.586 vs 0.475 06/08/2020. So far so good.

New oncologist must love testing monitoring. Oh I’m on 250mg Abiraterone mainly due to my Cardiovascular/Rhythm concerns. So far so good. I repeat PSA, CMP, CBC, chemistry labs again Dec 14th.

Guess my bew MO likes monitoring me.

Depotdoug

Muffin2019
Muffin2019 in reply to depotdoug

Thank you, encouraging news

depotdoug
depotdoug in reply to Muffin2019

Too bad i cant spell new and put ‘mew’ MO. That was while in bed at 4:30. Exercising now...

mperloe
mperloe in reply to depotdoug

The standard is to monitor liver functions and basic metabolism panel every two weeks for the first three months on abi. My med on does PSA and phosphotidic acid once a month.

I get them once or twice a year, more during the first year after diagnosis of metastatic PCa.

I sensed early on that urologists and MOs don't like scans monitoring their beloved PSA God. I found a friendly RO (two, actually) who would run scans. I've had two Axumin PET scan this year, January and August.

depotdoug
depotdoug in reply to dhccpa

I’ve game for another 68Ga-PSMA-11 PET scan like 08/01/2019 but they say PSA levels need to be at or above 3.0 i think. Stop complaining about scans re-scans Depotdoug. Next PSA in 12 days...

I get quarterly PSA tests and scans every 6 months. But I've been undetectable for going on 3 years, so I'm thinking that scans that often may be excessive, unless PSA rises.

Thank you, will ask if that scene happens with me how often do the scans run, what are your meds, do you still have your prostate and how many years have you been undetectable

No prostate; see my profile. Best of luck.

One caveat on scan frequency for high Gleason, low PSA fellas. Anecdotal: My guy was on Zytiga, which seemed to be keeping PSA low. However, a year later the CT scan showed mets all over! Our oncologist should probably have ordered six-month, not an annual scans, since my husband was diagnosed with Gleason 9 in all cores with a PSA of 3.38 (though no definitive mets at that time).

Muffin2019
Muffin2019 in reply to spouse21

Will keep that in mind, thank you for your input.

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