Worried Daughter : Hi Gentleman, I am... - Advanced Prostate...

Advanced Prostate Cancer

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Worried Daughter

fmoser profile image
16 Replies

Hi Gentleman,

I am here to find some hope, positivity, and some recommendations for my father who I love so dearly. My dad was diagnosed 5 years ago at age 65 with stage 4 prostate cancer and advanced METs, a terrible retirement gift. He started on the Lupron shot and 6 rounds of chemo (Docetaxel). He responded well for a year before his PSA started rising again. He then started Enzalutamide and despite the hot flashes, fatigue, and all the other side effects that come along with androgen deprivation things have been really good and he's been stable for 2.5 years! I guess he's already been really fortunate with that and he's been having a great, almost "normal" quality of life. It's almost been a break from the anxiety and Cancer consuming all of our minds.

Since Jan of this year every 3 months his PSA has slowly been rising. He went from being undetactable up to detectable, than 0.2, 0.8, 2.9 and then MO decided to test again in 6 weeks and now he's at 5.3, that result we got today. It's clear the medication is no longer as effective. Despite being really worried about this he feels good, no symptoms. We follow-up with the MO tomorrow and I believe the plan was to likely schedule some scans as he has not had any in 2 years because he was stable. They mentioned starting chemo in the near future again. My concern is that we live in Canada. It appears to me from some of the posts here that lutetium 177 or some of the radionuclear medications could be a good option. The problem is Canada is not set up yet and when I asked his doctor's they encouraged us to wait. I remember being told "your dad will get it at some point, but the optimal timing of adding medication isn't known yet, so while he's stable let's let that option develop and it will likely be an option for free here in Canada soon. There are also side effects to that so if he's doing really well let's just wait for that step."

I find it overwhelming to know there are options for men and yet when you ask oncologists about these options if they aren't approved in the country it's hard to get the right answers. It almost develops a sense of distrust and a feeling of should we be doing something different?

I just want to know if there are others here that have had a similar path and what medication they tried next? Could Chemo be effective a second time and then going on a different androgen deprivation drug? What other options are good? Are there any other Canadians exploring Lutetium 177 and where's the best place to go? Are there any questions we should be asking the MO?

Thanks in advance for any information that might be helpful!

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16 Replies
EdBacon profile image
EdBacon

Sorry to hear about your dad. I'm in the same situation. Right now in the United States, LU- 177 is in short supply.

Before you can determine whether LU-177 will work, he would need to get a PSMA-PET scan. This could serve two purposes for him. It could determine whether he has had progression on Xtandi and needs to change treatments (PSA rise alone isn't enough to decide) It could also determine whether he has enough PSMA expression for the treatment.

Another option is second-line chemotherapy Jevtana. That's what I just started. That might carry him over until LU-177 is up and running. I'm hoping for the same thing for me.

Wishing you the best.

fmoser profile image
fmoser in reply toEdBacon

Hi EdBacon, Thanks for you reply. I am hoping you have lots of success with Jevtana. Please let me know how things go. Have you had a PSMA-PET scan? I wonder if he can at least get the PSMA-PET in Canada?

EdBacon profile image
EdBacon in reply tofmoser

I've had 2 PSMA PET scans now. The first one showed almost nothing, but the more recent one showed progression. That along with increased pain and rising PSA means time to change treatment. I was on Xtandi too. Just got my first chemo infusion on Friday. Jevtana has less side effects for me than Docetaxel (Taxotere). I've been really tired and sleeping/napping a lot, but I'm only at day 3 after infusion. Don't know if it's working yet, but it's quite tolerable.

EdBacon profile image
EdBacon in reply tofmoser

Update for today, Tuesday 8/16. Noticable reduction in pain today. This is the first day in months with no pain meds. I think the chemo is working. I still feel tired, but that's getting better. Still quite a bit eaiser than Docetaxel so far.

EdBacon profile image
EdBacon in reply tofmoser

Update for 8/17. Woke today with lots of energy and no pain for the second day in a row. Chemo side effects are pretty much gone. They were mild anyway compared to Docetaxel. With this dramatic of a pain reduction, I'd say it's probably working.

For the first time in quite a while, I'm optimistic about the future, even though I know it won't last forever.

CAMPSOUPS profile image
CAMPSOUPS in reply toEdBacon

Good to hear!

Will this Jevtana be to not only knock it back but to also re-sensitize so that a 2nd gen adt will work again (Zytiga/Xtandi) ?

Sounds like the famous chemo crash 2 to 3 days after infusion isn't as bad with Jevtana.

Are you prescribed steroids as with Docetaxel (prednisone thru out therapy, dexamethasone day before, day of, day after infusion)?

EdBacon profile image
EdBacon in reply toCAMPSOUPS

I may be able to get some more time out of second-line androgen drugs although my doctor told me thought I'd probably get just as much out of Xtandi right after Zytiga as I would after chemo. I wanted to go right to chemo after Zytiga, but he suggested trying Xtandi. I also think part of his idea was to try to get more PSMA expression with Xtandi. He's been getting me PSMA PET scans under the justification that i am being evaluated for Pluvicto.

The pain reduction on Jevtana has been dramatic, and unexpected this soon after the start.

As far as steroids go, I got quite a bit of pre-meds, including 8mg of Dexamethasone according to the prescribing label. I'm also taking 10mg of Prednsione per day, but finding a need a little more beacuse of insufficiency. So I'm doing another 5 a day for now.

The "crash" isn't really a crash with this chemo for me. The whole thing is fairly mild, with the first 2 days almost side effect free. I'm really glad this is the case because my doctor will give me to 10 cycles if it works and I feel like I could handle that many. Not sure if I could take 10 with Docetaxel.

CAMPSOUPS profile image
CAMPSOUPS in reply toEdBacon

Thanks. Sounds like your in good hands and have rapport with your MO.

Congrats your getting a good response it seems too.

The stimulation of I think particularly AR's by Xtandi to be wiped by chemo seems plausible. Hear of that with radiological treatment in particular.

My docetaxel chemo was over 2 years ago and it seems like a dream or a nightmare lol.

Seriously the brain was foggy but the spirit was high "I'm going to poison as much of this as I can".

I still find humor in how some of the side effects mirror the side effects from those detective shows where one spouse poisons the other.

EdBacon profile image
EdBacon in reply toCAMPSOUPS

Yeah, it's still poison. But as Neil Young says it's a "kindler, gentler machine gun".

If you have to do it, I think I can safely say, you'll be looking at lower side effects than you had with Docetaxel. For me, I'd say it's about 1/3 the side effects of Docetaxel and shorter duration too. I'm a bit more tired than I was, but don't have that overwhelming sick feeling. Lower nausea too.

I don't have any illusions about how much time I'll get out of it, the median PFS is only around 4 months. But we can always get lucky so I'll keep hoping for that. In the meantime, just having 2 days without screaming pain and being maxed out on pain meds has been wonderful. I have not taken anything for 2 days now.

fmoser profile image
fmoser in reply toEdBacon

Great news! Thanks so much for sharing your positive progress. Optimism is contagious!

tango65 profile image
tango65

He could request Provenge a vaccine which could prolong life.

Discuss having a direct biopsy or a liquid biopsy to study the genome of the cancer and do IHC studies and histoligical studies.

The biopsy may give info indicating the cancer may respond to drugs such olaparib, rucaparib, keytruda or chemo with cabazitaxel and platinum compounds.

When an anti androgen fails it is better to do chemo than using other new anti androgen. The cancer may respond to chemo with cabazitaxel.

Other option is Lu 177 PSMA Treatment. He. will need a PSMA PET /CT. The cancer may respond to LU177 if the mets have a good PSMA expression (SUV greater than the SUV of the liver).

Discuss doing Xofigo (Ra 223) to treat the bone mets if he does not have visceral mets. Xofigo could prolong life.

fmoser profile image
fmoser in reply totango65

Thank you for this thorough reply! It’s helpful to familiar myself with different pathways!

tango65 profile image
tango65 in reply tofmoser

I wish you the best of luck wit the treatments

Tall_Allen profile image
Tall_Allen

If he has bone metastases and some bone pain, I think he can get Xofigo in Canada. Docetaxel will work until it doesn't, and then Jevtana can be used.

LearnAll profile image
LearnAll

The first step is to ascertain true extent of progression ..if any. Monitor PSA, ALP (preferably Bone Specific ALP) and getting scans (best one is Ga68 PSMA PET CT. If there are clear indications that bone mets are growing, then only.. its time to consider upgraded treatments.

fmoser profile image
fmoser in reply toLearnAll

Thank you for educating me on this. It’s easy to go into panic mode with the PSA rising.

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